Author Archive

My Beloved

2011-02-19

Hello everyone,

I am so happy to be able to post in my blog today.  As many of you know, I am having difficulty writing, but today I am blessed with the ability to write to you.

I read an article written during the holiday season named  Less Later, More Now! by a blind woman named Marcia Morrissey.

She talks about the stress of the things that we think we have to do for holiday preparations ” which often keep us “too busy” to light a candle and say a prayer, or read a bit of scripture, or that make us tell family members “later” when they need us “now.”

I think this happens in every day life, not just during the holiday period.  I go back once again to one of my favorite authors, C.S. Lewis, who talked about getting trapped in the “noise of humanity” and not stopping to listen to the silence of the spirit and learn what nourishes and feeds our soul and the souls of others.

I have seen a tragic pattern as I have read the countless stories of people in chronic pain or frontal temporal degeneration (FTD).  So many people who are carergivers and people who have chronic and terminal illnesses find the support of family members, friends, even fellow church members slip away.  These people gradually disappear from their sick friend or sick relatives life. They consider themselves well meaning but they are too busy, caught up in the “noise of humanity”. While living their daily lives, they feel burdened down as it is.  I understand these are hard times.

There is work that has to be done then there is “busy” work. Busy work I consider those things we do to distract ourselves.  Or maybe you are out of work right now, you’ve put in all the resumes you are able. You are feeling down so you veg out in front of the television. I know about feeling down and vegging in front of the TV.  We don’t have good cable where we are living now and I am still suffering from Turner Classic Movie channel withdrawal.

When you aren’t doing anything purposeful could you drive over and spend a little time with a caregiver or your relative or friend who is ill?  I can tell you this, one visit from you can make their day a good day and the bright spot in their week.

A little attention goes a long way. Perhaps you could do something, even the smallest thing would help.  If you can’t spend any time going to see them or you live too far away, then call them, send an email or a message on Facebook.

(To my friends, I’m not trying to guilt you into sending a message to me. I know you are there.)

Try for a minute to look at it from their point of view.  You have gone for many years thinking you had a close relationship with your family and friends. Many times you have talked about how you would be there for each other if anything happened.

Then you find out you have a terminal illness.  You expect those dearest to you will come to you and say, “What can I do?”  And what happens?  Your mother cries, “Why does this have to happen to me?”.  Your father shuffles back and forth for awhile, claps his hand on your shoulder then walks off to another room.  Your children stare at you with disbelief, run upstairs to google your illness then come back downstairs and confront you with the news that they found a site that says your disease is not terminal. Your sister is in total denial and your brother, who is a doctor, treats you like a difficult patient instead of the best friend who always understood you.

This unfortunately is not an unusual response. It is quite common.

But then you have to make the choice, do I exit now out of life or choose to go on?  I have chosen to go on.

Understanding that my spiritual self is my true self that journeys on through eternity has helped me to live with the horrible maladies that I face. What we are afflicted with in human terms may be blessings and opportunities in spiritual terms. We have to go on with what we have — like the blind woman or like the guy typing with his toes because he has no use of his arms or me using Dragon speak to dictate — and do what we can in the world.  I think to get through adversity you have to look at this world in more than merely human terms.

There is a difference between the human worldly goods and gifts and things we desire and the spiritual values. What on a human level is a disaster — to be afflicted with a fatal disease — spiritually may be a blessing.  It is terrible to suffer pain and loss, and to suffer from compassion for others that are suffering.  Spiritually those sufferings can have a spiritual purpose, to make us stronger, more compassionate, to have more understanding, and to grow spiritually.  Here in this world, now, with the afflictions and burdens we have to carry.

In my own life one of the major burdens that I have no one can see:  I continually have to keep the dam up against the flood of unruly thoughts that the death of the neurons in my brain is causing.  Unruly is a mild word.  The voices, the thoughts, are not mild.  It can be exhausting just to sit, to all outward appearances, quietly.

As I may have written before, I have spent some time reading the writings of the Saints. Two that I feel are my companions in suffering are Julian of Norwich and St. John of the Cross.   I did not ask for three wounds from God as did Julian of Norwich. Her words of suffering have been a companion in my suffering. I share with her the one of the gifts — wounds — that God bestowed upon her, which is compassion.

I also have found comfort reading the poem, Dark Night of the Soul. Like St. John, I have sought a personal relationship with God. God is the Beloved and I have a place within “where no one else can come.”  Although when I was growing up, I went to a fundamental Christian church every Sunday, I had an amazing experience when I was 13.

I was vacationing with my family in Red River, New Mexico.  We were staying in a lodge in the mountains.  I was reading a romance novel, sitting on a log. I closed the book ad exclaimed to a squirrel, “I am totally bored.”  I decided to go for a short walk.  I followed a path and about after 15 minutes, I looked around me and noticed the forest had changed.  All of the trees had brilliant colored leaves. The brook I noticed was wider and many beautiful fish swam in a pond nearby.

I looked around and saw a beautiful man in a yellow robe sitting not to far away from me.  I knew he was Jesus because he was my conception of Jesus.  He motioned and I laid my head on his lap. He stroked my hair and said words to me that I don’t remember. I felt as if I had come home.  All worries left my mind.  I fell asleep and when I awoke he was gone.

I ran down to tell my brother and he believed because he always use to believe me.  I took him back up the path but we could not find the place. My brother still believed me.  I knew this was not something I could share with my family. They would tell me it was a fantasy and it was pagan for me to say that I saw Jesus that way. Jesus just did not come to individual people in visions anymore.

But I kept this experience inside my heart and after I met my spiritual teacher, I realized I could have a personal relationship with God that needed no intercession.  God is my “Divine Beloved.”

There is a story from the East of a famous saint to whom God appeared as a beautiful girl of sixteen.  He was so tormented by the absence of his beloved when she did not appear, that he felt he had to abase himself to get her to return, to the point of licking dog droppings in the street.

I also have taken much comfort from reading the words from Rumi about his divine Beloved.

The reason I am sharing these personal relationships with God is that this relationship has kept me strong. I have lost just about everything that people lose at one time or another.

In her article Mary quoted the Scripture readings of the third Sunday of Advent, Isaiah 35:1-10:

“…They will see the glory of the lord, the splendor of our God.  Strengthen the hands that are feeble, make firm the knees that are weak.  Say to those whose hearts are frightened: be strong fear not!  Here is your God; with divined recompense he comes to save you.  Then will the eyes of the blind be opened, the ears of the deaf be cleared; then will the lame leap like a stag.  Then will the tongue of the mute sing.  Those the Lord has ransomed will return and enter Zion singing crowned with everlasting joy; they will be with joy and gladness.  Sorrow and mourning will flee.”

It is wonderful to read these words promising what will happen after we have shed this mortal suit.

Many of you are familiar with the passage that Mary quoted in her article, “Are you the one who is to come, or should we look for another?”  Jesus said to them in reply, “Go and tell John what you hear and see: the blind regain their sight, the lame walk…the dead are raised, the poor have the good news proclaimed to them, and blessed is the one who takes no offense in me.”

Many take this passage to mean that Jesus is saying he is “The One.”  I don’t discount this meaning

For me, this passage has an additional meaning, now and for everyone with ears to hear.  The one who is blessed is anyone who realizes that their true self is their spiritual self and who acts accordingly:  walk their spiritual path and nourish their spiritual needs. The truth is good news to the poor, to understand that all material gains are not real, that they will pass away in a short time, but you can gather what makes you spiritually rich, and that can last for an eternity.  The dead are raised are those who were dead to their spiritual self.  For the lame, no legs are required to walk with your true body — your spiritual self.  The blind can come to see the spiritual truth.

It is hard for people to understand about blessings.  A huge loss, psychological and physical pain, such things are not blessings within themselves.  But if you can understand that what we see around us, this mortal world is only a fraction or perhaps a distorted perception of the real world.  We are all spiritual beings, connected in ways that are hard for us to conceive. We are busy ants carrying crumbs. Any good or bad intention you have starts crafting a design that you do not see until it comes back into this world and affects you and others in ways you may or may not expect.

Words

2010-12-26

I am thinking about the importance of words.  I think most people take words for granted.

A friend of mine sent me an article by Tony Judt.  He wrote about the importance of words in this family when he was growing up, about the times in the beginning of the 1950s when speaking proper English was very important.  In college he was a master with words, but he didn’t really understand the importance of silence.

Over many years and during my illness I have learned the importance of silence.

A few weeks ago I went to see a play based on The Screwtape Letters by C. S. Lewis.  C. S. Lewis is one of my favorite authors and I will be talking more about his work in future.   In one passage Screwtape is advising his nephew Wormwood, a fledgling demonic tempter on Earth.  He suggests that Wormwood try to fill the human’s head that he is trying to corrupt with noise.  For if our heads are constantly filled with noise of people speaking, trains running, babies crying and dogs barking, we will never know the peace of silence and the knowledge that may come from within.

Tony says for him rhetorical flexibility allows for a certain feigned closeness, conveying proximity while maintaining distance. I see this in people who don’t walk the talk. I also agree in matters of language, outsiders are frequently deceived.

I remember that when I was the director of a health information department in a hospital, the director of human relations often sent down recruits who he believed were just right for the position I had requested.  He often based his decision on the person’s flair for words, what we call in Texas a bullshit artist.

I have always thought of language as a gift. When I was young I was too shy to speak so I wrote down my thoughts.   As I became older, I realized that many times people only listened to part of what I was saying to them because they felt like they needed to think about what they were going to say in reply. First to test this theory, then out of frustration that I was not being listened to, I would often stop in mid sentence.  Most people did not notice.  Has a pause/silence become so uncomfortable?

When Selch and I started dating, I would stop in mid-sentence and he would say “Yes, continue?”  I was somewhat flabbergasted realizing I had fallen into this rather lazy way of speaking.  Fortunately, I received enough prompting from him and was even able to finish my sentence even though it might mean talking over someone’s premature response.

As Tony wrote in his article many people talk the abbreviated language of Facebook and Twitter and texting.  It is still confusing to me because words used different ways can have so many ambiguous meanings.  I communicate on Second Life quite a bit.  Everyone has forgotten how to spell or they just don’t care about spelling anymore.  I will be texting with someone and am later shocked that I am talking to a philosophy teacher with a PhD.

We have voice on Second Life now which adds an interesting depth to conversations on Second Life.  If a person is speaking in text, it is easy to hide whether you are male or female.  Voice morphing software is available but they do sound like a male trying to impersonate a female or a female trying to impersonate a male

What I love about voice on Second Life is I have the opportunity to really speak with people from other countries.  Yes, there are some language barriers perhaps made worse by not being able to actually see the person but we usually seem to work it out and are for the better for having the experience.

I, like Tony when he wrote this article, am in the grip of a neurological disorder.  He says what I think so well that “the view from inside is as rich as ever.”  Fortunately, I am still able to speak fluently at times.  What you do not know is often it is a struggle to capture the words in my head and speak them out of my mouth or type them onto paper.

So many of my characters are suffering from locked-in syndrome.  For awhile they were all yelling at me, wanting me to tell their stories.  That is the way it has always worked.  I dictate the drama they play in my head.

In most people there is a control mechanism in their heads that they take for granted.  It is like a gate you walk through to get to the subway.  It helps order tasks and projects so that you aren’t constantly overwhelmed.

The reason it is hard for me to say or write my stories is the same reason I am unable to do activities of daily living even though I appear to be capable of doing these tasks which I’ve done all of my life.

I feel like there are so many tasks and I can’t do all of them at once, so I become paralyzed with fear and eventually I just give up.  The doctors term this apathy because that is what appears to be to them.  It is a much more complicated than that.

Now, my characters and ideas aren’t screaming at me.  They haven’t left me.  I spend much more time in silence now, contemplating, using Theeravada Buddhist mindfulness practices and saying  prayers.  This has opened up a world to me that many people cannot see because they are so busy living their lives and caught up in mortality, and noise.

I am not through using my words.  Selch is by my side, my life partner, helping me to pull expressions out that use to flow freely.

As Tony wrote, especially now in this world today, good honest communication is how we sustain and grow and solve the problems we are having in this country and in the world.  We were given the freedom of speech by God.  It is a gift that can be taken away.  Please use it wisely for ourselves and our future generations.

Since I’ve been away…

2010-12-05

I am very happy to be here once again posting to my blog.   I have missed being able to share my thoughts, feelings and information with you.

Unfortunately I have been unable to do even a little writing because of health problems.  First, I had a deep venous thrombosis (DVT) in my left leg. I was admitted to the hospital and put on a higher dose of anticoagulant medication.  I am still having pain sometimes and that leg.  We’ve switched insurance companies lately (my husband had to change his job to get better insurance that would pay for my meds) and it is been a struggle to get them to pay for some of my expensive medications.  I will talk more about that in an upcoming blog.

The most difficult thing that I’ve had to deal with is that my FTD is becoming worse and is affecting my ability to write.  I have so many stories in my head and so much that I want to share with people. My characters are screaming to have their stories told.  In the literature for FTD and one of the symptoms that doctors explain that may happen with FTD is apathy.

Before we knew I was diagnosed with FTD, Selch began to notice that I would not take my pain medicine even though I was in a tremendous amount of pain.  I did not seem to care about bathing even though I used to take two  showers a day, and that I would no longer pay the bills.

I think for me being labeled apathetic is not exactly the right term.  The problem is that when I am faced with the task, I become overwhelmed.  My mind becomes flooded with each detail of the task that I must do and I become paralyzed with fear to the point I am unable to take any action.  Then as a coping mechanism, I try to put out of my mind doing the task at all.

Now I am devastated that my FTD has started affecting my writing again.  I have so much information and so many stories that I want to share with everyone, but right now I feel like most of it is locked in my brain.  It is as if there were a large crowd of people who are trapped in a room but the control mechanism that used to be there to let them  file out in an orderly fashion is not working anymore.

Selch, as always my knight in shining armor, is working with me to help me to be able to write again.  Right now I’m using Dragon Naturally Speaking.  It is hard for the thoughts that come from my brain to go to my mouth instead of my fingers on the keyboard.

In the near future, I hope to once again be sharing my thoughts and feelings with you. Take care everyone, until you hear from me again.

Soulfulsilkee

Gifts from a terrible disease

2010-08-17

Sorry I haven’t been able to post lately.  I’ve been skirmishing with my cornucopia of miasms and the time I’ve had left has been spent resting between rounds of the battle.

I have talked before about gifts that come from illness, such as strength and compassion, but these two gifts that I want to mention are not happenings usually associated with FTD.

The first is unexpectedly increased creativity in some people who have FTD.  A passage from a University of California website says “In our clinic at the Memory and Aging Center, we see people who lose certain abilities, like language, while gaining new ones, like musicality and artistic expression. We have met individuals, particularly those with semantic dementia, who never created art before becoming ill and are now making wonderful, intriguing artwork. One explanation for this phenomenon is that healthier parts of the brain compensate for the areas that are no longer working. Therefore, visual expressions such as a drawing, painting or sculpture bloom as the person loses their capability for verbal language.”

I am a writer and I had a big problem with writer’s block that lasted for years.  A few years ago the dam burst and my mind was filled with many stories.  My characters have always “talked” to me since then.   I am the person who dictates what they tell me, and I do a bit of maintenance work on their pages.

Now, my characters constantly cut in line to try to be the first to tell their story.  They are a rowdy crowd and sometimes I have to blow the whistle and say, “Let’s have some order here. I will get to all of you eventually.”  I don’t think they believe me.  They know my time is limited so they continue their bad behavior.  When I am able, I try to dictate some of their words and I also have a “talk box” for each character who wants to tell me their story.  I can type or use Dragon Speak to get their words out.  Of course, it is only a temporary measure.  When I am too ill to keep up the system, the mob is back.  As of late, I think they have become more understanding.  During this last spell of illness, they entertained me by telling stories one by one.

The other gift  that I have recently received from FTD  I discovered recently.  I have no idea if others with FTD have experienced this with the illness.  Recently, we went to the Smithsonian Museum of Natural History.

Selch wheeled me into the room of stones and quartz.  I began to feel vibrations on different levels.  I told him about my experiences and he positioned me so I could touch different stones.  Each stone had different vibrations and the vibrations sounded like music.  As he pushed my chair further into the rooms, I could hear a symphony of different vibrations.  The colors, the “music” and the vibrations together were an amazing experience.

I wished that I could  touch all the different stones that were behind the glass.  Of all the stones I believe Amethyst was most pleasing to my senses.

Unfortunately, when we came into the room where diamonds were exhibited, there was a crowd of people.  My experience was somewhat muted.  Perhaps too many people block the flow of energy.  This experience is so new to me.

The last stones I encountered were meteors from space, mars, etc.  They also had their own vibrations and tones.  Generally their vibrations had a deeper resonance.

I had read about the power of stones and crystals but never really paid much attention to it.  We have a friend who is a jeweler and the last time I went to his house and he brought out different stones and gems, I did notice an attraction to some of them and I was also delighted to spend a few hours digging through different pieces of gold looking for real treasure (meaning higher quality gold.)  By the end of the day, I found myself really interested in gemology and he gave me a book to take home.

I tried to read the book but after I was away from the stones I lost interest.  Also my spiritual teacher had a collection of different stones and gems.  He talked about their life force and healing properties.

If any of you that have FTD (or another neurodegenerative disorder) and you have experienced an experience of increased creativity or this phenomena with stones and gems, please share your story with me.   Or if you are a loved one of someone with these disorders and have witnessed it.

Also maybe you or your caregiver might want to try or assist you with many creative activities to see if they appeal to you.  I read about a man who had no creative talent who has FTD.  He is now creating beautiful sculptures.  I am not saying that we all will be able to do that but perhaps you or your loved one might gain some pleasure by trying different creative things.

I wrote in a past note that I had lost my ability to play the piano with my left hand or recognize notes on the bass cleft.  We went to the music store recently and I did remember where to place my left hand on the keys.  It is a start and after we are more settled, I am going to purchase a keyboard and see if I am able to resurrect some of my musical ability.

Never give up. We are traveling through the dark woods right now, but on the other side we will continue our journey to a better place.

Loss, Part 1

2010-07-19

I apologize that I haven’t been able to post here for awhile.  Diseases and sundry disasters have intervened.  But, I am back and looking forward to sharing my thoughts and information with you.

Loss is something everyone experiences at some time in their life.   All will experience losing someone or something, and the greater the value, the keener the sense of loss.

When I talk about loss with people I often bring up a very famous figure, Job.  Here is a good, happy and wealthy man who  lost almost everything in this world — wealth, family, then health.  Whether you believe Job actually existed or not, the biblical story of Job is a very good account of how a person deals with loss.  Even Jung devoted a small book to the problems implied by Job’s losses, titled, Answer to Job.

I’m not going to debate in this post whether there is a God and why God lets things happen to good people.  I may have some further comments on this after re-reading C. S. Lewis’s The Problem of Pain.  ( Or rather listening to it as an audio book, as I can no longer read the paper pages of books and magazines.)

I want to point out Job as an example of a man who lost everything that he could possibly lose — save only his life — and still had faith that there was a higher power, that he was not alone in his suffering and that as long he lived there was some purpose for his life.

I have lost so much in my life. Those of you who know me understand that my life has been full of suffering and loss.  I have a PhD in loss (Pain, Hardship and Disaster).  Even my life is being taken.

When we suffer loss we may have some forewarning or we may not.

Even if we know the loss is coming, as much as we try to prepare ourselves, we are often surprised at the effects on our lives.

For me, there came a time when I could no longer drive.  Selch and I had talked about some problems I was having with loss of attention while driving.   I scraped a toll booth, and a guard post in a filling station.  When my son was with me, he warned me a couple of times that I was swerving off the road, but I didn’t recall it, so I thought he was exaggerating.  One day, Selch followed me to get the car fixed and told me that I was swerving in and out of my lane on the road and it was too much of a danger for me to drive.

I imagined when I was younger that if I ever wasn’t able to drive, I would be totally devastated.   I think because I had already had so many other losses and I had been driving gradually less and less, I was better able to cope with the loss than someone who was still working or who had small children.

Still, I had regrets. We lived on the East Coast and I wished I had taken more of the driving trips I loved to do.

From the time I got my license as a teenager, the ability to drive has meant freedom.  My mother would take away my car keys to punish me because she knew that it really tortured me, to not have the freedom to get out of the house, get into the car and go somewhere, or nowhere, just so long as I was driving.

For many years, even after I had children, if I was troubled, depressed or mad, I would jump in the car and drive down the highway for several miles and drive back.   I imagined if I had been born a few hundred years ago, I would have gotten up in the middle of the night and run through the forest or the fields.  (Also,  I probably would have had a shorter life span, because even Little Red Riding Hood knows it is dangerous to walk through the forest at night!)

Now, that I am confined to my recliner most of the time and getting out is a major production — with a wheel chair and making sure that I bring a bag with all my medications — I rarely think of driving.  Still, some nights I wake up at night searching for my keys until I realize I can no longer get up and go.

For me, there have been losses I haven’t expected.  I had been having abdominal pain that had been ongoing since the last trimester of my last pregnancy and had been getting progressively worse.  I saw an OB/GYN who told me I probably had abdominal adhesions.  They could be pulling on sensitive tissues internally, causing the pain, without any abnormal lab results.

She told me that she would do a laproscopy of the abdomen, a fairly simple day surgery procedure in which she would make a small cut and insert a tube in my abdomen so she was able to see the adhesions and cut them out.  Selch took me to the hospital on Valentine’s Day in 1997.

I had worked in the medical field for several years and  had day surgery before.  I was first aware that something wasn’t right when I woke up and they were pulling a tube out through my mouth.  Even though I was very groggy, I knew that I must have had general anesthesia.  I panicked inside. What had gone wrong?

The doctor told us that there had been more adhesions than she thought so she had converted my surgery to a laparotomy.  I wondered why she did a laparotomy without having me consent to it first.  From the moment I came out of anesthesia, I had severe pain in the right side of my abdomen to my back and down to my thigh.  I didn’t know then that the pain would never go away.  She had damaged three major abdominal nerves, and surrounding soft tissue, causing Reflex Sympathetic Dystrophy.

I couldn’t walk correctly for the first two weeks and the doctor told me it would resolve itself.  The walking got better but the pain was unbearable.  I had taken a two week leave of absence from my job.  I had just started a new job.  I tried to go back a few times to work but could not stay for more than a couple of hours.  My pain was too great.  I had to resign from work.  Selch, who was my boyfriend at the time, offered to let me stay at his house to recuperate.  I had to let my apartment go.  We thought it was temporary and that I would be able to get back up on my feet and get a job eventually.  I was never able to go back to work.

I had been employed full time since I was 21, and had been the primary bread winner after my children were born.  I worked my way up to being a director of a department at a young age.  After I gave birth to my daughter,  I worked for a company in which I assisted doctors in reviewing medical records for quality, then I became a consultant in a health information department.  I had been through a lot of hardships already and had had two failed marriages, but I always thought everything would be okay because I was able to support myself and my children.  Not having that security was a huge loss.  From then on, I was dependent on someone else.

I often  don’t realize on the last day that I am able to do something, that I will never do it again.

When I left my job the last day that I worked in March 1997, I did not know that I would never work outside my home again.  I had lost relationships and things before this happened, but I always believed that no matter what I would be able to support myself and my children. I did not make a great deal of money but I worked in the medical field and there was always a need for the type of work I did. Originally, I planned to stay with Selch for two weeks while I was recovering.  I never left.

I lost the sense of security and the independence that I would be able to take care of myself and my kids no matter what happened. And losses have a tendency to pile up on top of each other.   I had received a lot of emotional support over the years from a network of close friends at work. They continued on with their busy working lives.  We met a few more times for lunch and after work, but I would repeatedly have to cancel plans because I was not feeling well.  My friends stopped asking me to go out.

People started feeling uncomfortable around me. They didn’t know quite what to say about my pain and I didn’t want to talk about it much fearing that I was imposing on them. The other problem was that I wasn’t in the working world anymore. I wasn’t part of the team, I’d lost track of the players.

Finally, one of my last work friends flew the coop. I called her the Buzzard of Happiness, because when she talked about her life it all seemed so hopeless, but yet she had been a good solid friend who had a quirky sense of humor.

The last time I talked to her was when I had to cancel a movie date with her for the third time. She told me she could no longer be my friend, her life was depressed enough without having to think about my situation. Our outings had been one of the bright spots in her life and she didn’t want me to become another person she dreaded seeing.

My feelings were hurt but I appreciated her honesty. She was able to say what many are not able to.

We discovered that my pain would never go away.  My RSD might have been treated effectively, had it been diagnosed sooner.

Many of us have some losses that are so profound and hurt so badly that they are difficult to share. I have had a few losses that bring tears to my eyes when I even start to think of them.  You know these losses that leave you so brokenhearted that you build a grave someplace within yourself, a quiet dark space where you can go to mourn.

I spent most of my day today trying to explain the loss of my children to you.  When I started typing the words, I   remembered again the one normal weekend that became a catalyst of change for me and my children.  By the time I finished, tears were dripping down my cheeks and snot was flowing out of my nose.  I am not an attractive crier.  My eyes are red-ringed, my nose is as red the honker on my coach’s face after he had been on a bender, and  my head feels like the dead weight of my sorrow has crashed down upon it.

I can’t share that story with you today because someone with piercing words  recently sliced open the tough scab over my tender wound.  Yes, I am bleeding again, but I am not as raw as I once was.  I have developed tools over time to staunch the flow.  So I will save that story in draft for another day.

When one domino falls, the others behind it usually fall in an orderly fashion.  That isn’t how it is when you are riding the train of life.  One break in a relationship, a health crisis, even what might begin as a small lapse in judgement can cause a cascade of collisions on down the road.  Many continue on life’s journey but they are  riding a on a crooked rail.  The heart becomes a wounded member that limps between the strong beats of life.

For Those Who Are Not Heard, Part 2

2010-07-04

Doctors often do not listen to patients who have FTD, and will tell them that they do not have FTD.  They know so little about the wide variety of symptoms associated with FTD disorders, and how these symptoms and underlying diseases overlap.  This same phenomenon extends to the rest of the medical community:  those of us with illnesses, and even our caregivers, are not heard.

There is still much unknown about FTD and related disorders.  It is only this year that the leading researchers are starting to agree on which signs to look at and the basic measurements that they need to take, to enable them to start sharing and comparing the knowledge and data that they have each been collecting separately.

Further down the research food chain, doctors grab the more common stereotypes, and apply those typical symptoms as inflexible requirements for a diagnosis.  Many people who have FTD do not show “typical symptoms”, and so these doctors refuse to order MRI’s and PET scans, or the neuropsychological testing, that could confirm these presenile neurodegenative diseases in the early stages.  I was told by one self-proclaimed expert that if you don’t have emotional blunting, you can’t have FTD, despite physical evidence on an MRI of unilateral frontotemporal atrophy.

There is no cure for FTD and related disorders but neuroprotective medications do help to slow the damage from these diseases.  There are certain medications that people with these disorders that should not be on, certain medications that make their symptoms worse.

I understand that doctors are taught to sound confident and authoritative in talking to patients.  The idea is that the patient will be comforted to feel that the doctor knows his stuff.  The problem is that a doctor’s confidence in his knowledge needs to be based on fact, not fancy.  Missing a diagnosis of FTD adds years of uncertainty and unnecessary misery to patients and their families, over and above the depredations of the diseases.  And there are few things as disheartening to me as the aggressive ignorance of a doctor confidently and authoritatively asserting falsehoods.

Would it really be so hard just to listen?  To preserve some modicum of scientific humility?

Or maybe this humility is the means by which we can distinguish between the truly knowledgeable researchers and the lesser lights.

My words about this disease that is taking my life — robbing me of my grandchildren, and the world of the art that I want to create — come straight from my heart.  But there are so few who have the heart to listen.

A long time ago in December, I went to a bar, to listen to the words of a poet who was blind and hard of hearing.  He had another poet recite his poems.  All of his friends had promised to be there to listen to him.  This was a major event in his life.  He had never before revealed his poetry, what was in his heart, to anyone.

So the lights were dimmed and a blue light enveloped an attractive woman who sat next to the poet.  Her voice was like velvet and his simple poems about love flowed out of her mouth.   I was drawn into the poetry, my heart beating with the rhythm of his verse.

Then I felt a cold breeze periodically slip past my shoulders.  I looked around the room.  People were quietly getting up from their seats, stealing out like thieves into the night, slowing robbing the room of its humanity.  Then I remembered that another friend of ours, a poet who read his poetry every week at this time was reading his work  just down the street.  This section of town was known for the bars where poets read and people listened to live music.

After fifteen minutes, there were only five people there, the audience was the manager of the bar, a new female friend of the poet’s and me.  The female poet kept reading his poems and occasionally, she would address “the crowd.”  My poet friend continued to grin from ear to ear.  I wondered if he had known that anyone had left.  Then I thought perhaps he was better off not knowing.

I knew that if I walked down the street, most of the missing audience would be there.  I imagined myself chiding them for their transgression.  But, I decided, why waste my time in a verbal attack on fools, when a man was sharing his soul with us here.

About ten minutes before the session ended, his “friends” began to file back in as quietly as they had left.  Then she of the velvet voice said, “Before I read a final poem, I want to thank all of Bill’s friends for coming here tonight to listen to Bill’s poetry.  She rattled off their names one by one and they each squirmed a little in their seats or made some facial gesture, to acknowledged in a social way that they had been caught.

Then the poem was over and they all gathered around him to tell him how his poetry had touched their hearts.  I parted quickly not wanting to hear their gushing lies.

Alas for us who suffer these deadly diseases, there is no narrator in this life to name the names of those who will not hear.

For Those Who Are Not Heard, Part 1

2010-05-23

The other day, I was trying to make a referral and couldn’t remember how to spell my neurologist’s first name.  I asked Selch.  It’s not at all a common name.  He did a quick search on what he thought her name was just to check.   He found a page on the internet that matched the name, but didn’t look quite right.  He started to read.  The woman was a doctor and a PhD, but was recently retired from the Texas A&M College of Medicine as a professor of surgery, not a neurologist.  She was writing about two epiphanies that she had experienced in her life.  I noticed he got a little misty as he read.

Her first epiphany came in response to a prayer.  She was called to be an ordinary Christian woman.  A bhakta.  [Note:  In ancient India, the followers of Vishu marked their foreheads with three vertical lines, and the followers of Shiva, with three horizontal lines.  The term bhakta means “one marked by striations”, and came to be used as a collective term for those who devote their lives to God, of whatever persuasion, whichever direction the lines are drawn.]

Her second epiphany struck closer to home.  Her mother became ill, and the illness damaged her brain severely.  It left her “locked in” with no means of communication.

Her cerebellum–the center of coordination–had been destroyed. When this happens, there is no way to speak, no way to signal. Try to signal and your hands fly wildly like startled birds. Try to speak and a scream comes out.

Part of the second epiphany concerned her mother.  God told her, “…I need someone with the resourcefulness to reach this woman trapped in a body that doesn’t respond.”  Many would have said that her mother was gone, and put her into a home.  That way, she wouldn’t have to agonize about the effects on her two young boys and her toddler, Beth.  It would certainly be the easy way out.  Beth would stand for hours by the wheelchair, looking at her grandmother.

Instead, she persevered and worked with her mother, eventually finding a way that her mother could respond in ways that meant Yes or No.  Her mother was still there.  They found ways to communicate. Her mother was not gone.   Selch puts it in computer terms:  The problem was with the interface.

I can relate to little Beth because I was also called Beth when I was growing up.  I remember also standing by my grandmother’s chair.  She had severe Obsessive Compulsive Disorder, but we were very close.  My doctor and I talked about how we had both been called Beth growing up.

Then it all became clear to me.  The little Beth in the story is my neurologist.

This story is important to all of us who are patients and caregivers.  We wonder sometimes, “Is my loved one still there?  Should I keep trying?  Maybe it is time to give up.”  I read many messages from caregivers who wonder if their loved one is still there, should they keep trying to communicate.  I always say, Yes.

Some people, frequently doctors or scientists, will try to “objectively” define a person as a collection of behaviors.  If the behaviors change drastically, they say the person is no longer there, that this is a different person, as they no longer act in the same way they used to.  They will frequently tell the family, “Do what you think is best for the remaining members of your family.  The person you loved is no longer there.”  What would have happened to little Beth’s grandmother, if her mother had taken this view?

I am more than a collection of behaviors.  Christians believe that there is an immortal soul, and that this physical body is only temporary.  Buddhists and Hindus also believe that this body is temporary, that we are not simply the body, but will be reborn or reincarnated.  There is a problem with my body, my brain has a disease that will cause my body to die.  It is not a problem with me.  It is a problem with my interface to this world.

When my disease progresses far enough, I will no longer be able to communicate in words.  Selch will find new ways.  He knows I will still be there, loving and caring and suffering, on the other side of a broken and deteriorating interface.

The Light and the Tree

2010-05-06

A  few nights ago, I was looking out of a window and saw a street light that was next to a tree casting an eerie artificial light on the tree’s leaves.

For a few minutes, I was transported back to a night when my 16-year-old self was staring at a light shining on a tree outside of the window of my great Aunt Jewel’s house which was located in a small town in Texas

I had just received my driver’s license a few weeks before.  Ever since the movie, American Graffiti, many fad’s had been revived from the 50’s, one of them being “cruising.”  Early in the evening, I had been cruising down main street in my yellow Maverick with my younger brother who was a reluctant passenger.  We had been going to visit my grandparents at least one weekend a month ever since I could remember.  My cousins were much older than we were and there wasn’t much “treasure” left up in the old closet upstairs at our grandparent’s house  for us to discover.   I was thrilled to be able for the first time to  drive up and down Main street, windows down, radio playing “We Are the Champions” and local boys honking their horns and shouting, “Baby come take a ride with me.”

When I was looking at that light many years ago, I remembered at that moment feeling excited that a new world of possibilities was opening up for me and also secure in an environment of extended family that wrapped their  loving arms around me.

Then I came back to myself as I am now  looking at the light next to the tree.  I thought about my grandparents, my great-aunt who passed out of this world years ago.  I began sinking into constant pain and and dwelling in disappointment that my grandchildren will never be coming to “Grandma’s house for the weekend.  I  lived in a world where I had lost much.  Before I feel  down any further in the well of despair, I stretched my back and lifted up my head and whispered a short prayer.

My mind flooded with many life  lessons  that have resulted in strength,understanding and compassion.  I realized I do have in front of me a world of possibilities and ahead lies the preparation for shedding this broken shell. I will continue my journey  with my true identity, that part of us that always will be  Imagine those possibilities  and as Captain James T. Kirk, Starship Enterprise, once said, “To infinity and beyond.

Living with FTD: Updates on FTD

2010-04-27

First I want to discuss the spring newsletter of the AFTD.  Go here to receive the spring newsletter online.

During the meeting in Miami  discussed in the AFTD newsletter, they mention two proposals, having a national patient registry and a national data base.  I think both of these are key projects that will spread information about FTD to those who need it.  The database hopefully will be ready for piloting in Fall 2010.

I agree with the steps for AFTD strategic planning.  I hope that they will have enough support staff and volunteers to educate the medical community on a widespread basis about  FTD. Perhaps there will be some doctors/nurse practitioners/physician’s assistants that are willing and eager to learn about FTD?  I went to a Woodstock Sim on Second Life that was up above the clouds.  Maybe that is where my head is right now.  Most neurologists do not know anything about FTD and even some FTD specialists do not understand that there is a wide variance of symptoms in FTD patients and patients often have other related neurodengenerative disorders in addition to FTD.

Dr. Boeve was involved in the Miami  meeting mentioned in the FTD newsletter.  My FTD doctor is Argye Hillis.  When I spoke to her earlier in the month,  she told me that she, Dr. Boeve and other FTD specialists met at  last  year’s May meeting in Ft. Worth, Texas for FTD caregivers.  They are making plans to form a group of FTD specialists who will meet together on a regular basis to exchange information and standardize practices of testing and treating people with FTD.  Dr. Boeve and some of these plans are mentioned in the newsletter.

There is another caregiver’s conference in May at Ft. Worth.  Several of us have been talking about the need for FTD sufferers who are still able to communicate and have insight into their disease to have a discussion or panel at these conferences for FTD.  We are very grateful for the support that these conferences provide our loved ones.  We as FTD patients would also like to be included into these activities not only for our own well-being but to provide information to caregivers from the aspect of a person with FTD.

Myself and others I know with FTD  are looking into being able to speak at the International conference.  I encourage as many people with FTD who are able to attend these conferences and let people in the medical community and caregivers know that some of us with FTD have much insight into our disease and are willing to share.  If anyone can help us in our endeavors to speak as FTD patients at seminars, conventions or web based activities please contact me.

Susan Grant will be having a get together in Colorado in May to celebrate the finish of her film Planning for Hope. I don’t have the details on hand but I will provide them later.

Going back to the FTD Newsletter, Dr. Mackenzie’s statement  that virtually all pathological forms of FTD can now be assigned to one of three major molecular categories is good progress towards unlocking the keys of the nature of the beast.

The genome study is exciting news for people who have FTD that runs in their families.  I know a few people who have heredity based FTD.   It is bad enough to have one member of a family have FTD but even worse when multiple members have FTD.  Instead of multiple family members bringing some clarity and connection with a family it often leads to even more denial and disharmony.  Siblings or parents of someone who have FTD that also have FTD are often in denial about their own illness ( a common symptom of FTD) and this makes it that much harder for the person with FTD who understands about the disease to make progress towards understanding and unity.

There has been exciting news about the drug Davunetide  owned by Allon Therapeutics.  Early clinical trials show promise in treating FTD.

Frontier Dementia Research Group is doing research in frontotemporal dementia.  See this website for information about their studies and publications. They also have caregiver centered studies, carer support and research study information.

That’s all for now.  I will continue to let you know more as I receive updates.

May there be peace that guides the planets and love that steers the stars ………..

LIVING WITH FTD: People spreading the word about FTD.

2010-04-26

In this post, I want to talk about people and groups who are spreading the word about FTD.  FTD is still a relatively unknown disease and it is people on the front lines and in the trenches who are doing good work to spread the word about FTD.  Many people believe FTD patients have little insight into their disease.  I am here to tell you there are a growing number of people with FTD who are well aware of their disease and going to great efforts to spread the word about FTD.

For those of you who don’t know, there is a wonderful chat group at The FTD Support Forum. We meet on Tuesdays and Fridays at 2:00 p.m. central.  My user name on the support forum is Mermaid.  Any of you who have FTD and are able to communicate or have a loved one who can help you communicate, I encourage you to join the FTD Forum.  There is a lot of support and good information at the forum.  Our chat group has many friendly folks who are waiting to welcome you with “open arms.”

If you want more information about the chat group, join the FTD Forum and send a private message to Mermaid.

Also, many people who have FTD  are doing wonderful things to spread the word about FTD.  John who has FTD   is very involved with the Alzheimer’s Organization.  He has been working with his local chapter and has recently been to Washington to speak to Congress about pre- senile dementia and FTD.

Tracy Mobley  has written an article as a guest blogger this month on  AlzheimerSpouse.com about what it is like to live with FTD.

Susan Grant has finished her film Planning for Hope.  I really encourage everyone to go to her website, FTD-The Other Dementia.  She needs volunteers in all areas to help her with film distribution.

In addition, there are several people with FTD who have blogs and websites.   If anyone has an FTD/Neurodengerative Brain Diseases blog or website and I haven’t put you on my blogroll, please let me know.

In the next six months, I am planning to have a place on the virtual world, Second Life, for people with FTD, other Neurodegenerative diseases, chronic pain and those who are terminally ill.  More news on that later.

There is a Webinar on Thursday, April 29th.  It is Free Webinar Cognitive and Behavioral Issues in PSP. CBD and FTD with Dr. Brad Boeve. It is from 8 to 10 pm EDT and you can register at this link.  Some of the members of our chat group are patients of Dr. Boeve’s and I’m sure he has some valuable information to share.

Anyone who is doing projects to let people know what it is like to live with FTD or focusing on the lives of FTD patients please contact me.

I will keep you posted with updates about what is going on in the FTD world.

Updates on Pain

2010-04-26

Hi Everyone,

I have had a lot going on and I wasn’t able to post last month but I am back and hope to write three posts this week.  Most of you don’t know I like to visit second life now and again, lately it has been again and again lol.  Right now, I am in a virtual world at a writer’s camp out site. Nothing like writing in the woods.  Today they are having an all day writer’s marathon.  I don’t think I will be able to stay for eight hours but I hope to use the time to get out these posts.  Anyone who is on Second Life, my avatar’s name is Eppie Shoreman.  Any of you who are on SL or plan to be on SL, there is a support group for chronic pain at “The Centering Place” on Second Life.  Contact me for details.

Now I am going to give you some updates on pain.  I’ve been meeting many people in the last few months who have other illnesses and also have developed chronic pain disorders.  Many of them are suffering greatly because their doctors do not know how to treat their pain.  I encourage all of them to see a pain management specialist.  Unfortunately, as many of us know, even seeing a specialist is no guarantee that your pain will be controlled.

There is some new information in the American Pain Foundation’s Spring Newsletter.  For those of you who are interested in Occupational Therapy there is an article written by an Occupational Therapist.

In “Health Decision Putting Your Best Foot Forward,” the author talks about challenging the decision that the doctor knows best.  Most of us who have chronic pain disorders have found ourselves in the difficult position, should I listen to this doctor and go quietly out of his or her office without adequate support for pain control or should I speak up for ourselves and try to get the medication and therapies I deserve?

Getting adequate pain relief unfortunately often  means seeing several doctors until you find one that will really listen to you and agree to be part of your team in helping you achieve good pain control.

I have found that bringing Selch to my appointments has been a really big help.  Having someone go with you to your doctor’s appointment who is knowledgable about your condition and is willing to stand up for your rights goes along way in helping you to find  health care professionals that will help you with your pain.

If you don’t have a friend or a relative who can fill this role, I suggest that you check out local pain support groups in your area and see if you can find someone in the group who is willing to be a “patient advocate” for you.  If you can’t find someone locally search for support services available in pain foundations and also visit different pain support groups on the Internet.  Post that you are in need of someone in your are to act as a “pain advocate” for you.  You may not find someone right away but I’ve found that when I am looking for support, persistance matters.  If you are in too much pain, ask a relative or friend to do this for you.

I cannot stress how important it is for anyone with a chronic pain disorder to get the help they need to achieve good pain control.  Any of you that have other ideas and experience to share regarding finding help for pain control, feel free to reply to this blog post.

Karen Richards writes some interesting articles on pain.  See “Growing Pains, a Predictor of Fibromyalgia,” She refers to an article in Reuters and talks about misconceptions about growing pains and how growing pains may be an early indicator of fibromyalgia.

Another very interesting article by Karen is “War on Drugs Has Ended – What Does This Mean for Pain Patients?” If you have read my blog, you know that I have posted more than once about the “War on Drugs.” Karen writes, ” In May 2009, nearly four decades later, Gil Kerlikowske, the new director of the White House Office of National Drug Control Policy (ONDCP), declared the war on drugs to be over.”  This guy must not be living on the same planet as those of us with chronic pain disorders.

Health care providers and even pain management specialists in growing numbers are refusing to give people who have chronic pain the narcotics they need to function day-to-day in their lives because of past DEA actions, pending regulations and the constant media exposure of the continuing War on Drugs.  Totemism regarding narcotics is still prevalent.  There are still so many people saying that we need to get rid of these evil narcotics that are destroying so many lives.  Eliminating prescription narcotics will do nothing to stop people from recreationally using narcotics.  They will just go to another readily available source to get their drugs.  Pain patients are left without adequate pain control.  When will the media and the government start caring about the millions of people in the world who are suffering from chronic pain?

About the ONDCP’s educational efforts regarding the needs of chronic pain patients, I am afraid it is too little too late.

The Pain Monitor from the APF has some interesting info for people with chronic pain. It has news information about different pain topics as well as resources for chronic pain patients.

These are some pain updates for April.  As always, I hope to be your faithful correspondent.

Living with FTD-suffering

2010-03-22

I recently read an article “You will call, I Will Answer.

Anyone who is going through suffering will be able to relate in some ways to William Stunz’s account of his life.  I don’t totally agree with everything that he says.  It has helped me over the years  to read accounts of other people’s suffering and also talk to other people who are suffering.  Each person who is suffering  needs to find tools to cope.

A book that I hold close to my heart is “The Revelation of Divine Love” by Julian of Norwich.  I can give you no better explanation of the connection I feel with the Anchoress than Selch describes in his recent post.

Stunz talks about how he felt when people inadvertently blamed him for his pain due to lack of faith.  Many of us who have an illness or who are  caregivers have  experienced well wishers who tell us we need to have more faith or things would be better if we prayed more often.

I was raised in a family who went to a fundamentalist Christian church.   Now I practice  Bhakti Yoga and Theravada Buddhism.  I do not judge anyone’s faith or religion.  All paths  lead to God. We are all a part of God, brothers and sisters, connected by our souls.

Why does God let bad things happen to good people?  There have been countless books written on this subject and for many, this question has no answer.

Dr. Stunz says, ” I do not think that my suffering is God’s discipline.”  I agree that suffering is not literally “God’s discipline”, but I do believe in  karma good and bad.  We make our own karma, some life experiences are decided before we come into this life and in other matters we have free choice.  We are also affected by other people’s karma. Karma has helped me personally to  understand suffering.  What is good for spiritual growth may not seem like a good thing for us while we are living in our physical bodies.   The reality we perceive as humans is only a small part of  “The Truth.”

This does not make suffering less painful or less real for us.

Stanz recounts about whether or not suffering has made him a better person. We have heard many times that suffering will make us stronger and that is the last thing we want to hear.  My own experience parallels the experience of Dr.  Stanz.  At first, when I developed chronic pain I was overwhelmed by sadness, depression (anger turned towards myself) and despair.  I came to realize that I did have a choice, give up or go on with my life one day at a time.  If I dwell on the past too long , it does nothing to change my current life and it wastes the limited energy that I have that could be used in a positive way to make myself and others feel better.

For those of us who suffer and those of us who are caregivers, we must realize that life changes for everyone.  Chronic illness, FTD in particular, changes our lives, behaviors of the caregiver and of the loved one, in  particularly difficult and often incomprehensible ways  While the illness robs us of many things, the part of us that is real and true, the being who cares, loves and wants to reach out to others is still there.

When a woman is grabbing the arms of her husband  because he is trying to take the car keys in a boorish and childish manner because he has FTD and doesn’t believe or remember he can’t drive, doesn’t she think of the many times those arms around her made her feel safe and warm?  She has reminded him so  many times lately that he cannot drive and she thinks about when she may have handed him keys with no thought of peril for his well being.  When you can’t manage not wetting your pants do you ever think about the time not too long ago when you put your pants on one leg at a time without any thought and managed an entire department of people?

We must not forget who we are, our true selves and understand that the disease is causing these troubles and behaviors and the disease is not who we or our loved ones are.  We should hold tightly to this life rope that connects us to who we really are.  It will help us hold on to our dignity and compassion for ourselves and our loved ones during the most trying times.

I agree with  Dr.  Stanz that accepting that I had a terminal illness was easier than I thought it would be. Once I accepted that everyone dies,  I am understanding there are blessings  that come with  a shorter span of  interaction time with the world  so I should try to enjoy things while I can

I had an eating disorder when I was young and I have never liked food.  Now I really enjoy eating.  Selch is cooking dinner right now and preparing fruit salad.  Who would have thought that fruit salad could be downright delightful?  I appreciate small things like chocolate pudding, looking out the window and watching the birds,  and talking to an old friend.  It is a struggle for me to go out anywhere, but I still find activities that make me feel good.  Like  Stenz said, he was able to feel more physical pleasure.

I often go to Second Life which is a virtual world on the Internet.  I have an avatar there who can fly, swim, sail, see many beautiful places and visit many interesting people.  I think allowing fantasy and creativity in to your life when you are suffering is a good thing.   We have forgotten how to play as we did when we were children.  Yes we have responsibilties but  all of us who are suffering could use some play therapy.

Last year was the roughest year of my life.  What helped me get through that bad time was definitely my relationship with Selch,  my partner.  During that time, Selch often teased me that I was Jobette.  One bad thing after another kept happening until I got to the point that I felt like I only had a few things left to lose.

Many things and relationships I thought had to be there for me to ever be happy again didn’t need to be there and were actually impeding progress in my life.

Progress in life has a lot to do with knowing, loving, accepting and protecting yourself as you would your dearest friend.  I can only change what I do.  I cannot change anyone else just by insisting that they be the way I want them to be.

It may feel like we are not in control of our lives because of the circumstances that we are in.  But, we make choices all of the time about how we will react to the situations where we find ourselves.

There is something to be learned from everything that I experience.

I practiced mindfulness exercises before it became “fashionable,” and  these practices have greatly helped me with my struggle with difficult and unwanted thoughts.    To be able to quiet the mind of all its busy thoughts for even a short period of time is very helpful.  Like any exercise the more you do it, the easier it is to do and the benefits are greater.

I am learning  to stop caring about what people think of my situation. Selch and I have to focus our energy on living our lives the best way that we can.  It is so true that real friends will be supportive and if they aren’t, then they are not a “true friend.”  This also applies to family members.

If you are sick or you are a caregiver , it is you who are in the trenches.  You don’t need a lot of well wishers who don’t want to get their hands dirty.

I am in constant pain and FTD is keeping me from “controlling” many areas of my life but I constantly remind myself that the illness cannot control who I am.  Eventually it will disrupt my interface with the world to the point that I will not be able to communicate or understand what anyone is saying to me.  I have spent years in this life continuing the journey towards self-awareness.  What will happen as  I  watch the disease that is causing my physical body to do things I would never do?

Maybe, my weird sense of humor will remain.  I hope I will be able to be tolerant and understanding of that physical body that is the shell of me.

Mr. Stenz spoke of one of his fears of death was the fear of be disappointed that he didn’t live a better life.  I can relate to his feelings.  Sometimes I still do ask my self why I am  here but now  less and less I feel like my life is not useful so why don’t I just die?  I know I have  been given blessings of a well stream of creativity, the dam of writer’s block has burst.  I have so many characters telling me their stories, I often wonder who should I tell what and when in this limited time that I have.

Why do I live? Why is there suffering?  Perhaps, like children we ask many questions but as we grow in time, life (the continuing journey and existence of our being) we will no longer need to ask the question.

Brain Scan-I Feel Your Pain

2010-03-05

I just read an article about a brain scanner that may be able to help assess pain.

“The definition of pain is that it is subjective, and until now an objective measurement has remained elusive,” says Morten Kringelbach of the University of Oxford.”

As I have read before, the author points out that functional MRI scans have been used before to identify brain areas that “light up” when someone is in pain.  I was excited about this news when I first read it until I found out results varied from patient to patient.

I have never read about  analysing arterial spin labelling that  measures how much oxygenated blood is flowing through particular areas of the brain.

The procedure seems interesting but their participants for the study were 16 young men who had just  had their wisdom teeth removed not chronic pain patients.

Perhaps it will provide an additional way to assess pain in addition to the well-known “pain scale” which I agree with the author is an ” inadequate measure of pain”.

I’m not sure that identifying which areas of the brain are involved in a person’s brain will lead to personalized treatments that target those areas until we have drugs that are better able to target specific areas of the brain for treatment. Of  course physicians are learning more and more about which drugs work in certain areas.  For instance, methadone works better for central pain.

As the article points out, there are challenges because responses to pain do vary throughout the day and there will be differences in the level of brain activation in one person to the other.  Pain is still a complex issue and there is still much to be learned about pain syndromes.  Emotions affect pain and now physicians are learning that chronic pain can spread like a cancer and “glob on” to various emotional responses.

Jeffrey Mogil brings up the possibility of the brain scan being used to measure pain in people who are locked in and who are in a vegetative state.  I’ve been doing some research about this phenomena of being “locked in” because of my frontotemporal dementia.  I wonder what I will be able to feel once I am no longer able to communicate and no one is able communicate with me.

This is a picture of New Scientist Magazine.  I have found some really interesting articles in this publication.

In the article, “Coghill warns against disregarding someone’s description of pain in favour of an objective measure. In the US, insurance companies would jump on an objective method of measuring pain, but this could mean that certain people with different patterns of activation lose out,” he says. “We need to ensure that patients are never in a position where they are denied treatment.”

The idea that insurance companies might want to jump on the band wagon to use this tool to deny chronic pain patients treatments and meds is a real possibility as those of us with chronic pain know all too well.

The last part of the article discusses whether pain is a symptom or a disease.  After much research and many discussions with a very intelligent pain management doctor who is always “up” on the latest research, I have concluded that pain is not just a symptom but a disease.  Remember about the finding I discussed earlier how in chronic pain, these pain signals latch on to all sorts of neurological responses?

The researchers mentioned in the article agree that  chronic pain is associated with functional, structural and chemical changes in the brain which redefines pain as a disease.

Let’s hope that further research continues to validate that chronic pain in reality is a complex disease that needs to be treated.  It affects the lives of millions of people all over the world.

Chronic pain- Recent Updates

2010-03-04

Hi everyone,

Recently, I’ve been having a difficult time with various illnesses  so I am a little behind on posting.  I have found multiple articles that may be helpful to those of you with chronic pain.

First let’s discuss slow breathing might help pain.  I first learned about this practice in prenatal classes prior to the birth of my first-born.  Imagine the scene on of Alien when Sigourney Weaver’s guts were being ripped apart by the alien.  Slow breathing did little to help 13 hours of Pitocin induced hard labor.

Fortunately, I have found tha slow breathing can be affective for chronic pain as well as anxiety attacks related to my FTD.  The author also mentions mindfulness exercises which I do incorporate with slow breathing.

Try to sit in a relaxed position.  Breathe slowly and concentrate on each breath and how it feels as it goes in and out .

Regarding mindfulness exercises, the mind is a wild horse and it takes awhile to “break it in.”  If you continue practicing mindfulness exercises which can be something as simple as repeating one syllable phrases over and over again, the results you will gain in helping to control your pain will be well worth the time.

The next article is Tattletale Pills Remind You to Take Your Medication.  Two topics are discussed.

Companies are using wireless technology to develop devices that monitor whether you take your pills.  One way people may be doing this in the future is swallowing a microchip about as thin as a few human hairs.

Over a two-year period, it became increasingly difficult for me to remember to take my medicines and take the correct dosage.  Fortunately, Selch has worked out a system that makes it easier to make sure I receive correct dosages at the correct times.  He bought a large square pillbox that has little boxes for each day of the week and boxes for morning, lunch, afternoon and bedtime.

He or my aide have to pour my meds which also include pouring  liquid pain medicine  into small plastic bottles for each time I need to take a dose.  Even though we have an organized system, someone still has to remind me to take my meds.

The author of the article writes about  a pill that, once ingested, wirelessly transmits information about side effects and how well it’s working. 

Information is sent it back in a readable form to a cell phone or e-mail account.

I wonder if it also tracks any information about side effects that may occur?  The author writes it might be available as soon as the end of 2011 but I imagine that it will be first  for the kind of medication that gets the most attention and research funding such as cardiac meds.  Still, if it works, it may be able to benefit those of us who take medication for chronic pain and FTD within the next five years.

The other invention discussed in the article is the GlowCap that helps people remember to take their medication.

If I was still taking my meds from a bottle,  I don’t think I would see the glowing orange light.  Also what “melody” are they talking about?  Have you ever seen the movei, “Little Shop Around the Corner?”  Jimmy Stewart plays the head clerk.  The manager bought a large amount of cigar or cigarette boxes that play a melody when the person opens the box.  No one wants to buy them and Margaret Sullivan ends up getting a job as a clerk in the store because she convinces a woman to buy the box by telling her that it is a candy box.  When you open the box to take a piece of candy, the melody plays so it reminds you not to eat too much chocolate.

The next article is New Extended Hydromorphone approved.  Hydromorphone is also known is Dilaudid which is one of the medications I take in liquid form for breakthrough pain.

Dilaudid, in past research, is known to be a short acting medication so an extended release version I think is definitely a plus for chronic pain sufferers because Dilaudid can be very affective in helping pain.  It works by making the person feel like the pain is not as bad as it is.

As Karen says, Exaglo is being released under the REMS program which we in the chronic pain have been welcoming like the plague.

The company that developed Exaglo is CombinatoRx, Incorporated (CRXX) which develops novel drug candidates with a focus on the treatment of pain and inflammation.

An article in Bioworld says Exalgo’s REMS  includes “safe-use tools” for prescribers, patients and pharmacists to ensure the “right patients” get the drug and at the appropriate dosages, he said.

Neuman noted that Exalgo’s REMS is less restrictive than the one Covidien initially had recommended to the FDA, which currently is working on developing a classwide opioid REMS.

As I have explained in previous articles, REMS for other specific long acting narcotics as they stand now are very restrictive and will certainly cause many physicians to stop prescribing these narcotics and many pharmacies to stop dispensing these narcotics.

In Pain Topics.org, they outline the REM requirements for Exalgo.  They sound much like the REM plans for other narcotics.  I am concerned that even if a doctor agrees to enroll in the Alliance program and patients agree to enroll in the program that pharmacists will not enroll in the program.

Let me give you a personal example.

We have recently moved and Sech went to the local CVS to get my pain meds. filled.  We had no problem in obtaining the medication at the pharmacy in the previous state  where we lived . All CVS stores order from the same distributors.  Selch spent three weeks getting the run around from our new local CVS pharmacist before he finally agreed to order my medication.  When Selch brought the meds home, he opened the sack up to discover that the pharmacist had given me the Mylan Fentanyl patches although Selch had specifically ordered the Sandoz patches.  Mylan do not work as well for me.  I am not putting them down, to each his/her own and I bless what ever works for you.

The pharmacists said that Sandoz patches were not available.  CVS stores nationwide order from same distributor.  This does not compute.  If this is the attitude of pharmacists now will they be willing to enroll in this Alliance Program?

Notice in the Pain Topics commentary that” FDA Briefing Material for the meeting  provides no data indicating exceptional abuse liability for hydromorphone and  a clinical study conducted in only 9 subjects that found hydromorphone was no different in abuse potential than hydrocodone or oxycodone.”

Also, “hydromorphone products accounted for less than 1% of nonmedical use of all pharmaceuticals, less than 3% of such cases involving opioid agents, and it was implicated in less than 1% of all drug-related suicide attempts.”

I agree that data does not call for such a restrictive program for this new drug.  Lack of data has never stopped the feds from involving themselves in the practice of medicine and trying to persuade physicians not to prescribe narcotics.  Remember the  DEA practice ofraiding of doctor’s offices a few years ago?

The author of Pain Topics asks, “Will there eventually be separate REMS programs for every opioid analgesic, each with its own registration requirements and prescribing procedures?”

Unfortunately, I say yes there will be if they have their way about things.  I don’t know what drives the DEA and the FDA to practices that are and will keep more and more chronic pain patients from receiving their pain medications.

They consider those of us who need narcotics to have any quality of life an acceptable sacrifice for their stated agenda which is  to keep people from abusing prescribed pain medication.  Even their own studies and data do not show that there is significant abuse in people who take prescribed pain medication.

Taking pain medication away from people who need in it in hopes that it will keep people from abusing drugs(who are taking their relative’s and friend’s pain meds)  is not realistic.  When you cut off one source, people who abuse narcotics will just find another source for their habit. Despite the “War on Drugs,” narcotics are plentiful.  So what have they accomplished?

Are these agencies that naive or is this a power agenda?

I have no idea, but we as chronic pain patients need to tell everyone we know what is going onand  we or our loved ones who understand what is going on need to write our congressmen.  I understand that we are all victims.  We are victims of our illness and victims of the medical and governmental system.  But, the only way I  see that we can make a difference is if we ban together and tell anyone who might be able to help us in our cause for the right to have adequate pain relief.

There are some rays of hope in this darkness of denial such as the MayDay Pain Project.  John Stossel recently did a program about the plight of chronic pain patients, War on Pain.  It was on the Fox Business Channel so most of us were unable to see it.   To watch the program go here.

One of the physicians in the practice where I go for pain management is involved in the MayDay project.

Let’s all pray that someday soon this world will WAKE UP.  Until then, remember we are all brothers and sisters united by our souls.  Whether you believe it or not the thoughts that we think may affect our reality so try to think positive thoughts.  I’ll be thinking positive thoughts for all of you and know that you are always in my prayers.

Do we really want socialized medicine?

2010-03-01

I’ve known about the perils of socialized medicine for years.  I use to work in the health care community and I heard horror stories from doctors and nurses who had lived in a country where there is socialized medicine.  I just read an article called Annals of Government Medicine. It paints an accurate  picture of problems with Socialized Medicine.

The people who want to cram socialized medicine down our throats say,”Take this, I know it doesn’t taste good but Mommy or Daddy knows what is best for you.”

To me a “nanny state” means we get thrown off to some “nanny” i.e. the government who is getting paid to take care of us.  She will most not likely treat us like we are her own, encourage free thinking or independence.  If we are able to go out and stand up for ourselves, she no longer has a job.

Promising treatment for CRPS/RSD

2010-02-08

I just read a post on Chronic Pain Connection about Promising treatment for CRPS/RSD.

I have suspected for a long time that my CRPS and other illnesses might be linked to an immune disorder.  Another interesting thing for me is that I was treated with IVIG which is discussed in the study during my childhood because I had severe asthma and recurrent pneumonia.  Another layer of the onion is peeling.

Also see Researchers Discover new treatment for Complex Regional Pain Syndrome.

Anti-depressants may not work

2010-02-02

I just read an article in Newsweek that says antidepressants may be no more effective than placebos. I have been on several antidepressants.  My relationship with antidepressants started when I was having moderate situational depression.  The doctor tried putting me on three or four antidepressants but none of them helped and I had the additional burden of side effects along with depression.

The only thing that helped my depression was getting out of the situation.  But, I have talked to many people who swear that antidepressants help them so I’ve always thought if they work for them and they suffer no side effects then I wish them the best of luck.

After I developed symptoms that could not be explained, physicians that I saw always pushed antidepressants.  They told me they weren’t saying that everything was in my head and that anti-depressants actually had been shown to help my symptoms.

I gave them another go round.  Again, nothing but side effects.  So, I started refusing antidepressants.

Then, my doctor diagnosed me with complex regional pain syndrome.  He has a very scientific way of thinking and explained to me in a scientific manner why antidepressants work.  So once again I hopped on the horse.  This time my companion was Cymbalta.  For the first two weeks, I actually felt better.  I happened to be on vacation in No Where’s Ville, Pennsylvania when I had a severe anxiety reaction due to Cymbalta.  My physician advised that I immediately stopped taking it.

After that, I started doing some research of my own regarding side effects of antidepressants, reading some studies and reading  lots of testimony from other patients that  made me realize that antidepressants can have some major side effects, even suicidal ideation.

Since then, the only thing I have let my doctor prescribe in the anti-depressant category is Trazadone in a very small dose to help me sleep at bedtime.

I have been mostly focused on side effects of anti-depressants in recent years and haven’t paid that much attention as to whether they worked or not.  Many people said that they really work for them and who am I to judge?

I do remember reading a study that said the body adjusts quickly to change in serotonin levels.  I also read recently that serotonin levels are not the hallmark for depression that everyone has been thinking they are.

The article in Newsweek says that studies show that anti-depressants are no better than placebos.  I believe we all have the ability for self healing if we are able to have faith.  Perhaps there is something to the placebo effect and no one should be concerned or ashamed if it truly is a placebo effect.

I am  concerned  that when everyone starts reading this article , they might discount the placebo affect and perhaps not feel as well.  I suggest reading the writings of Edgar Cayce if you are open minded.  His abilities are an example of how the mind does have the power to heal.

I grew up in church where they told us that healing only came through Jesus.  Now I do believe that healing does come from God but the power to heal has been given to all of us.

Remember the passage in the Bible that said if you have the faith of a mustard seed you could move mountains.  I think so.

I once knew a man who had the “gift” of healing.  He knew this gift came from God and everyone has the potential ability to “heal.”  It is one of God’s gifts to humanity.

I cannot say whether antidepressants work for others or not.  In the article someone asked why would the FDA would approve antidepressants if they didn’t work?  The FDA has a huge political agenda and they are not always looking out for the best interest of the people.  See FDA REMS and the fact that they have blocked two new pain medications that might help chronic pain patients.

Please if you are on an anti-depressant, talk to your doctor before you decide to stop taking your medication.  If you get off antidepressants suddenly it can cause serious withdrawal symptoms that could be life threatening.

Long Term use of Opioids in people with chronic pain

2010-02-02

As you are aware if you have read about me and my posts, I have been taking narcotics for many years.  After much research and several discussions with my pain management specialist I am convinced that it is safe to use opioids in long term treatment for chronic pain.  An article in Medscape  says there is little risk of addiction from long term use in “select” chronic pain patients. Only (0.27%) of 2613 patients in the studies reviewed who received opioids for CNCP for at least 6 months reportedly developed an addiction to the medication.

The author also mentioned that many people withdrew from the study because lack of pain control and various side effects caused by the pain medication.  This is always a problem when treating chronic pain patients.  Multiple medications and combinations of medications and different dosages as well as route of administration may have to be considered before the patient starts receiving ongoing adequate relief.  Finding the right medication may be difficult in the beginning .  I know it was for me, but because I had exhausted all other avenues of treatment, I stuck with taking prescribed narcotics for pain management and my doctor and worked as a team to find the correct medications for me.

One concern for patients on long term opioid treatment is drug monitoring being done by many physicians. Relying on urine drug screening and testing for managing opioid-analgesic therapy in patients with chronic  pain causes unrecognized problems and challenges.

At least two small studies have found that physicians ordering urine drug screens to monitor patients on long-term opioid therapy typically are not proficient in interpreting the results according to the article about pitfalls of using urine screening tests.

While those who are for urine drug screening have a list of justifiable reasons for doing the tests,  testing results can be complicated and often misleading, leading to delays in patients receiving medications as well as problems in doctor/ patient relationships.  In a previous post I described my frustration about having to wait for a urine screening the entire afternoon in the doctor’s waiting room and I was only “discovered” to be still there when a nurse came to lock the front door at the end of the day.

The article explains many reasons why results of urine tests can be misinterpreted.  This may cause physicians to wrongly label a patient as a drug abuser and punish them by even closer monitoring or worse dismissal of the patient from the doctor’s care.  If the doctor receives positive test results all factors should be considered by reviewing the patient’s history and having a discussion with the patient before any drastic action is taken.  Remember a discharge of a patient by a pain management doctor is a black mark on the patient’s record which makes it difficult for the patient to find anyone else willing to treat their pain.

I read an article in Reuters that even legitimate usage of opioids can cause an overdose in patients. A study, published in the Annals of Internal Medicine was done by  researchers  who followed nearly 10,000 adults who had received at least three opioid prescriptions within 90 days to treat chronic pain.

Of these, 51 experienced at least one overdose, and six died as a result.  Reported studies such as  this one rarely discuss the specific circumstances of these overdoses, what other medications were taken and the co-morbid conditions that the patients might have.

The article states that “several million Americans now use opioids to relieve disabling chronic pain, and so even relatively small overdose rates could amount to thousands of overdoses every year.”  But in fact this does not happen.  Most patients who use opioids to relieve ongoing chronic pain are opioid tolerant which means their risk of overdosing on the narcotics is slim to none.

In the study, overdoses were particularly common among people who had a history of depression or substance abuse.  Remember the people who overdosed were a only a small number of people  in the study who took prescribed opioids.  A history of drug abuse or depression should be documented in the medical record and a physician should take this into an account when prescribing opioids.  This opens up another problem of lack of good historical information by the physician in the patient’s medical record.  I won’t further discuss that in this post as I have discussed the matter in other posts and probably will again in the future.

In “A Review Shows Opioids Relieve Chronic Pain With Little Addiction Risk,”  Meredith Noble, a senior research analyst at ECRI Institute, one of 14 evidence-based Practice Centers in the country under the U.S. Agency for Healthcare Research and Quality, and her colleagues reviewed the findings of 26 clinical studies comprising 4,893 participants of people who take prescribed narcotics on a long term basis.

They  wanted to look at studies  in which people who had chronic pain were treated  for six months or longer, given that chronic pain can go on for years. The review included studies of individuals on opioids for as long as 48 months.

In studies reporting abuse or addiction, only 7 out of 2613 patients reported that they took their medicine incorrectly or that they became addicted.

I agree with the results of the study, if patients are properly screened by history of problems of drug abuse or other complicating factors there is little risk of abuse or addiction.

In conclusion,  long term opioid treatment in chronic pain patients is safe with very little risk of overdose or abuse.






New Marker for Cell Death might someday be used in neurogenerative disease

2010-02-02

I just read an article called Monitoring Cell Death Could Help Cancer Treatment.  While now they are studying these monitors for cells that have been attacked by tumors there is a potential that it may be able to be used in neurology to target cells that have been damaged by stroke and neurogenerative diseases.

An Israeli company called Aposense has developed an imaging marker that, when used with PET scans, indicates the presence of dying cells.

“Apoptosis, the process by which cells commit suicide, is a vital mechanism in the body that weeds out damaged, infected, or otherwise unhealthy cells. No matter what the disease or the tissue, cells undergoing apoptosis have very distinct characteristics–the electrical profile of their membrane changes, the cells become more acidic, and lipids in the membrane lose their rigid order and become jumbled. Aposense believes it has found a way to target a trace marker to this combination of traits, which would let doctors image cell death.”

They  have designed small molecules with very high specificity for the apoptotic cell.  A small molecule recognizes the set of alterations in the apoptotic membrane of a cell and it binds to the cell, goes through the cell membrane, and accumulates.

The reason that this tracer might be able to be used to target cells damaged by storke and neurogenerative diseases is because the characteristics of apoptotic cells are universal.

Perhaps someday it may be used to detect dying neurons in someone who is in the very early stages of FTD.

What is missing in this picture?

2010-02-01

I felt like I just had to say something.  It has been annoying for the past few months.  In the last two days I have read an article providing information about FTD and information about a conference.  Both of them stated that the information/conference would be helpful for physicians, nurses, and caregivers.  Do you see something missing there? HELLO, I’m here.  I am a person who has FTD that can reason, communicate and has a great deal of insight into my illness.

Guess what?  There are others in this world like me.  It is frustrating to live in a world where most people don’t understand what you have and the people that do assume that everyone who has it is aggressive, apathetic to others, has extreme personality changes, etc.

Perhaps that will happen to me but there are variants of FTD which exist in which the person who has it does not become aggressive, apathetic to others and has extreme personality changes.

As I said in my last post.  FTD is underdiagnosed even in patients who have “typical” symptoms.  Most physicians who see patients don’t see people like me until they are in a later stage if at all because we do not have the “typical symptoms.”

It is a frustrating situation for every one.  I just want to let people know that there are people who have FTD that are actually posting messages, blogging, chatting, researching information about FTD and getting information from conferences.

One of them made a film, another one wrote and published a book.  Some of us are still here and making a difference in this world.

Living with FTD-poem that applies to people who have FTD

2010-01-29

I read this poem on a support group that was written by a man who died in a geriatric ward in Nebraska.  I think it applies to people with FTD also.

Crabby Old Man

What do you see nurses? . . . .. . What do you see?
What are you thinking . . . . . when you’re looking at me?
A crabby old man . . . . . not very wise,
Uncertain of habit . . . . . with faraway eyes?

Who dribbles his food . . . . . and makes no reply.
When you say in a loud voice . . . . . ‘I do wish you’d try!’
Who seems not to notice . . . . . the things that you do.
And forever is losing . . . . . A sock or shoe?

Who, resisting or not . . . . . lets you do as you will,
With bathing and feeding . . . . . The long day to fill?
Is that what you’re thinking? . . . . . Is that what you see?
Then open your eyes, nurse . . . . . you’re not looking at me.

I’ll tell you who I am. . . . . . As I sit here so still,
As I do at your bidding, . . . . . as I eat at your will.
I’m a small child of Ten . . .. . . with a father and mother,
Brothers and sisters . . . . . who love one another.

A young boy of Sixteen . . . . with wings on his feet.
Dreaming that soon now . . . . . a lover he’ll meet.
A groom soon at Twenty . . . . . my heart gives a leap.
Remembering, the vows . . . . . that I promised to keep.

At Twenty-Five, now . . . . . I have young of my own.
Who need me to guide . . . . . And a secure happy home.
A man of Thirty . . . . . My young now grown fast,
Bound to each other . . . .. . With ties that should last.

At Forty, my young sons . . . . . have grown and are gone,
But my woman’s beside me . . . .. . to see I don’t mourn.
At Fifty, once more, babies play ’round my knee,
Again, we know children . . . . . My loved one and me.

Dark days are upon me . . . . . my wife is now dead.
I look at the future . . . . . shudder with dread.
For my young are all rearing . . . . . young of their own.
And I think of the years . . . . . and the love that I’ve known.

I’m now an old man . . . . . and nature is cruel.
Tis jest to make old age . . . . . look like a fool.
The body, it crumbles . . . . . grace and vigor, depart.
There is now a stone . . . . where I once had a heart.

But inside this old carcass . . . . . a young guy still dwells,
And now and again . . . . . my battered heart swells.
I remember the joys . . . . . I remember the pain.
And I’m loving and living . . . . . life over again.

I think of the years, all too few . . . . . gone too fast.
And accept the stark fact . . . . that nothing can last.
So open your eyes, people . . . . . open and see.
Not a crabby old man . . . Look closer . . . see ME!!

Living with FTD-Frustration of Diagnosis and Support for FTD Patients

2010-01-29

I am going to be writing more posts on what it is like living with FTD in the near future.  This morning, I want to talk about a particular frustration that I share with some other people who have FTD as well as people whose loved ones have FTD.

The “typical” FTD patient according to most medical literature exhibits personality changes, “acting out behaviors”, denial and lack of insight about their illness.

In reality, symptoms of FTD can wildly vary among people who have the disease.  FTD is hard to diagnose because a person with FTD can show symptoms before actual brain damage shows up on an MRI or brain scan.

Even people who have typical symptoms often will be misdiagnosed as having psychiatric problems and spend valuable early years under the treatment of a psychiatrist and taking psych. meds that actually may make their FTD worse.

Most neurologists do not have the training to diagnose FTD.  People with FTD usually “pass” typical neurological examinations.  Thus, the neurologist tells the patient that he or she cannot find any neurological abnormality that explains their symptoms.

I have many FTD symptoms but as I mentioned above, I do not have the typical symptoms that doctors use to screen for FTD.  I’ve had unexplained neurological symptoms, anxiety, depression and increasing apathy towards activities of daily living for the last five years.

My husband and I went through Dante’s Medical Inferno trying to obtain diagnoses for my other illnesses (RSD, abdominal migraines, Celiac Sprue, Meniere’s Syndrome, etc.) I’ve met some physicians who belong on the inner rings of hell but after years of struggle I finally met a few doctors who are good Samaritans.  You will know when doctors get their angel wings every time that hell freezes over.  Okay I’m joking, sort of.

I was admitted to the hospital for unexplained neurological symptoms.  The neurologist came in with a gaggle of baby docs, did the usual neurological examination and said what so many have said before, “I don’t know what is wrong with you.”

My husband, a battle worn veteran of diagnostic warfare and physician retreat, requested that the neurologist order an MRI of my brain.  The neurologist complied.  Most doctors are willing to order an expensive test.  Why not, if the insurance company pays for it and they can be rid of a difficult case that could potential cost them time, money and liability by using  the authority of  The Test that will certainly show something if there is actually something wrong.

My MRI was consistent with FTD/shrinkage in the frontal and temporal lobes on the left side.  The neurologist had his own opinion.  Although he knew nothing about FTD, he told me that FTD was rare and I did not exhibit the symptoms so he was sure that I did not have FTD but I should follow up with another neurologist.

If, I had not been a professional patient then I probably would have gone to another neurologist who knew nothing about FTD.  I would have continued having greater difficulties with anxiety, depression, loss of speech.  When I started having auditory hallucinations then I would have probably been referred to a psychiatrist and  put on psychiatric medication that might make my FTD even worse.  My family totally baffled by these developments as I became incontinent and unable to speak would be advised by friends and the family physician that it was probably time to put me in a nursing home.  I might have died not ever knowing I had FTD.

As I mentioned, I belong to an FTD support group.  They are a really nice group of people almost all caregivers that provide a lot of good information and are very supportive to whoever joins the forum.

I am glad I found this group.  I can’t go out to a support group and there aren’t really any other FTD support groups online.  As the months passed, I discovered as many people do who have chronic, serious or terminal illnesses that I really wanted to talk to others who also had FTD.  It is great to have supportive friends but sometimes when your in this sort of situation you really want to talk to someone who is  down there in the trenches sinking in the same mud.

Fortunately, I met a very brave and compassionate woman who has FTD.  She’s made a documentary about families coping with FTD.  She invited me to a weekly chat group where I eventually met six other people with FTD.

Most medical literature says that the hallmark signs of FTD are acting out, personality changes, denial and lack of insight into illness.  Another FTD “researcher” told me despite my solid proof that I did indeed have FTD diagnosed at Johns Hopkins that I could not have FTD because of did not have these “hallmark” symptoms.  He told me he had reviewed 2000 cases (I later found out not actual people but autopsy slides of people) and all of them had the “hallmark” symptoms.

It is a fact that I have met a total of seven other people who have FTD, are able to communicate and have insight into their illness.  I realized if there are eight people who have FTD who did not have the classic early symptoms of FTD that neurologists use to screen for FTD then there are probably many people living their lives that are progressively becoming more difficult that don’t realize they have a terminal degenerative brain disease and they might have only a few more years to live.

This possibility really bothers me.  Most people who have terminal diseases have some forewarning even if it is a short period of time to say what they want to say to their loved ones and get their affairs in order.

No one knows when they are going to die and many people die in accidents.  Still it bugs me with all our modern medical technology that there may be thousands of people out there who don’t know that they have a devastating terminal illness.

Since most recognized FTD patients are unable to express their needs in a functional manner there is not the kind of support for FTD patients that there is for people with other terminal diseases.  Support for FTD on the Internet is primarily focused on caregivers.  I certainly agree that they need much  support but I think there should be more support in the medical community for FTD patients including those that are unable to communicate their needs.

Since FTD ,until recently, has been considered a rare disease even by FTD specialists, there are very few programs set up for FTD patients.  I wished that FTD patients were able to receive the same kind of support that Alzheimer’s patients are now receiving and that there were  more clinics that had programs and interaction for FTD patients.

New research in Alzheimer’s has also lead to new research in other neurogenerative diseases such as ALS, Parkinson’s and FTD.  I hope in the near future that there will be more programs for FTD patients.

Currently, FTD patients are treated with medications for symptoms.  Most FTD patients before they are diagnosed have been progressively having  increasing problems at their jobs and not long after they are diagnosed they end up having to go on leave or disability.  They remain at home with their families until their loved ones can no longer take care of them and then they are placed in nursing homes where they usually rapidly decline.

I have read about a lot of families that are wonderfully supportive and do everything they can to help their loved ones with FTD.  Also the Alzheimer’s Association has support groups for people with presenile dementia that people with FTD can attend.  Unfortunately, I am too disabled by my other illnesses to be able to attend a meeting.

Still, the burden of care and support remains with the families of loved ones.  If people with FTD don’t have loved ones that are able to take care of them and support them, they end up living alone until they cannot take care of themselves and then they are put into the nursing home.

I have not seen one article that addresses the possibility that there may be thousands of people who have FTD who do not know they have FTD because even FTD specialists rarely see “atypical” patients such as myself and the others who I have met who are “atypical” patients so they may not even know “atypical” patients exist.

It is a fact that there are people that have FTD who are able to communicate and have insight into our disease.  There must be others like us  who are probably falling through the cracks because they do not have the “hallmark” symptoms of FTD which are used as a screening tool for FTD.  Perhaps when FTD no longer is labeled as rare by most neurologist, this will occur to some physicians.

I read an article recently in which an FTD researcher speculated due to the new research breakthroughs they are making in discoveries about neurodegenrative diseases that the diagnosis of FTD may end up accounting for 65% of people who have presenile dementia.

I do not wish for anyone to have FTD but the more number of people who can be found that have FTD means larger amount of funding for further research and programs for people with FTD.

If people with FTD were like stars that scatter the universe and I was an angel, I would scoop them all up in my magical net and protect them under my wings.

I am one spiritual being who is having a human experience.  Part of my experience is living with FTD.  I do the only thing I am able which is  to tell people about what it is like living with FTD and giving support over the phone, the internet and always in my prayers.

Patient Medical Centered Home Demo

2010-01-20

I just read a post titled Patient Medical Centered Home Demo.  This is about redesigning health care groups  with improvements that included same-day appointment scheduling, direct access to some specialists, primary care redesign to enhance care efficiency, variable physician compensation, and an electronic medical record with a patient Web portal to enable patient e-mail, online medication refills, and record review.

It appears that there was some  increased patient and physician satisfaction with this model.

It sounds promising and many services in the model move towards patient centered health care.

Writing a comment to FDA about proposed REMS

2010-01-19

I received a response from a post I submitted on Chronic Pain Connection:

FDA REMS Proposal
Karen Lee Richards
Monday, January 18, 2010 at 09:55 PM

I would also encourage you and everyone concerned to write to the FDA.  They are taking comments from the public regarding these proposed REMS until Oct. 10, 2010.  Here’s a link to the FDA announcement.  Toward the bottom of the page of the FDA announcement is a link to their form if you’d like to submit it online and their address if you’d prefer to mail it.

Risk Evaluation and Mitigation Strategies for Certain Opioid Drugs

This will take you to another page where it asks you to choose which document you want to reply to.

Choose FDA and choose public announcements.  There will be several items to choose from.  Select  Risk Evaluation and Mitigation Stategies for Certain Opioid Drugs and then you will be taken to a page where you can place a comment.

If travel worked like health care

2010-01-19

I invite you to watch this video on the page : If Travel Worked Like Health Care.

It might help you realize what a tangled web the government and insurance companies conceive when they practice to deceive.

Article on FDA REMS

2010-01-18

I just read an article titled ” When Elephants Dance , Ants take a Pounding”.

“On December 4, 2009, the U.S. Food and Drug Administration (FDA) called upon pharmaceutical company representatives to report on their progress in developing a REMS (Risk Evaluation and Mitigation Strategy) for extended-release or long-acting opioid analgesic products containing oxycodone, morphine, methadone, and other agents. Concerned about what are perceived as high rates of misuse, abuse, addiction, and overdose with these powerful pain relievers, this is the first time the FDA has demanded a REMS program for an entire class of drugs.”

Many of the drug companies manufacturing the above mentioned narcotics have formed a  Industry Working Group (IWG) to try to deal with the problems of drug abuse  while still trying to assure that people such as chronic pain sufferers will still be able to get the medication they need to function in their every day lives.

The FDA gave these IWG’s little information to form a base to construct a plan even though the IWG members have spent many hours putting together a plan. You can read in the article about the proposed phased in plan

As the article points out, the problems are not with the people who take the prescribed drug but it is a community problem.  No matter what the FDA regulates there is still going to be abuse of “prescription” drugs.  The FDA thinks by keeping doctors from prescribing narcotics with abuse potential that it will stop people who abuse prescription drugs.

Some of these drugs may still be available on the street because of prescription narcotics prescribed overseas.

It is obvious to any thinking person, that people who abuse drugs if they do not have prescription narcotics available will obtain drugs from the “street.”

Some FDA officials have admitted that it is their goal to get doctors to stop prescribing these narcotics period.  They obviously do not care about the thousands of people like me who need narcotics to make their pain manageable so they can live day to day.

These officials have also admitted that it is their plan to put all of us who are prescribed these narcotics into a register and ration the amount of narcotics we receive.

Why, why, why do they want to do this? They have to know that we who responsiblity take narcotics under a doctor’s supervision are not drug abusers.  Or do they?  Have they bought in to the totemism of the “evil’ narcotic so far  that they believe even legitimate narcotic use should be stamped out?

Is it to prove that they have done “something” to address the war on drugs so their funding will be continued?

I have seen so much violation of constitutional individual rights in the past few years, I’m starting to not recognize this country as America, Land of the Free.

What can we do? We can do what our founding fathers afforded us the right to do.  We need to spread the word about what is going on as much as possible and join the consumer movement for health care reform.

We can write to all our congressmen and women and tell them our stories.  Also we can vote people out of office who will not stand up for our constitutional rights.

Even though I have a terminal illness, I for one will not roll over and give up.  Fortunately, there are physician practices and other foundations with strong political backing who are prepared to fight these proposed changes.

I’ve already read so many sad stories about people being undermedicated due to physician fears of governmental retribution.  I understand their fears and concerns, but to stop giving people medication that they need to survive before any action has been taken against their practice is inexcusable.

The DEA did raid doctor’s offices but the numbers were few and most cases were settled out of court.  It was enough to send many doctors rushing away like herd animals.  They should look at what actually going on now, not what they fear may happen.  While they can help people who are in horrible pain they should remember their oath and not turn people away who are in agonizing pain.

I believe physicians should stand by their patients and face what is coming together.  I still see humanity in some physician’s practices and I am old enough to remember when caring for the patient was the primary focus of the physician.

We need strong minded compassionate people in the medical field.  This is another reason why I believe that the best model for health care reform in a consumer based movement.  We have a right to good quality of care.

I let myself for a minute imagine the post apocalyptic world for chronic pain patients that would exist if the FDA is allowed to intact their plans.

Thousands of  people who suffer from chronic pain and chronic illnesses will be having to make life and death decisions.  Such actions would force those of us who chose to live and carry on with their responsibilities to seek our narcotics from an illegal market who would be more than willing to welcome us into its clutches.

Those without money to pay for these narcotics might be forced to do things that actual junkies do not because we wanted to get high but to survive.

Is that what the government wants, to send thousands more consumers into the illegal drug market?

Hopefully, it won’t come to this.  As I said, I do see promising signs that physicians and organizations are joining force to keep this legislation from being acted upon.

If you want to read more information on guidelines that the FDA is using to define chronic pain and treatment of chronic pain with narcotics see  The National Clearinghouse Guidelines, Managing chronic non-terminal pain including prescribing controlled substances.

I also want to remind readers that I do have another blog that I am starting.  It is called The Professional Patient.

The Patients’ right to their medical records

2010-01-16

I’ve clearly stated my views previously that I believe that patients should have full access to their medical records.  Yesterday I read an interesting article, Patients Demand, “Give us our damned data.”

The first story in the article talks about a woman whose husband was transferred from one hospital to the other.  She had to run back to get his medical records from the first hospital so that he could get adequate pain relief.  The second hospital refused to give him pain medicine until they received his records from the first hospital.  Most people would assume that the staff from the first hospital could fax the records over to the other hospital but that isn’t the way things work.  The system for retrieval of medical records is broken and it long overdue to be fixed.

I have said before that I have a degree in Health Information Management.  Once upon a time having been a supervisor and then a department director of a medical record department, I saw how hard it was to keep track of medical records.  The strangest place I ever heard where some lost records in Texas were found was in the trunk of a medical resident’s care in Florida.

As described in the article there are other reasons for patients not being given their medical records.  When I left the field of information management, only two hospitals in the state had electronic medical records.

It does not look like things have gotten much better.  In many hospitals,  only parts of the record are converted into an electronic medium.  During my stays in the hospital as a patient, I saw nurses typing and clicking boxes online, then writing the same information in two different places.

I was in the hospital for a month with a deep venous thrombosis and by the end of my stay, despite their electronic checklists, they still didn’t have my medication correctly scheduled.

What happens when you are discharged from the hospital or you are seeing a physician at their office and you ask to receive a copy of your medical records?

As Ms. Cohen states in her article, there are federal laws that guarantee patients the right to their medical records.  This does not mean that patients will receive complete copies of their medical records in a timely fashion.

If you try to obtain your medical records of a recent hospital admission, you will be directed to the medical records department.  But as it is explained in the article, a clerk might tell you that you can’t have your records because they are not complete. They have usually 30 days to provide you with the medical record.  As the article says, if you need the records more quickly because you or your loved ones are in another hospital, have the attending physician request the records.  Hospital staff usually complies to requests when a patient has been readmitted to a hospital.  But, unfortunately, sometimes hospitals do not get the records in a timely fashion to the other facility.

I’ve been behind the scenes.  They aren’t lying when they say the record is not completed.  Many records come down from the floor without signed orders, without discharge summaries because the doctor has failed to dictate them yet or perhaps the record is still in processing and it hasn’t been put in proper order and not all reports have been filed into the record.  But after 30 days, it is reasonable to expect that the records should be complete.

Often the clerk will suggest if the record is incomplete that if you fill out a request for the medical records and write down the doctor they need to be sent to, they will send a copy of the records they have to the doctor who needs to see them.

If the clerk is able to make a copy of your medical record then you will be charged a fee.  After all it cost money to make copies (not as much as they charge but of course you have to figure in employee time, etc.)

When you try to obtain copies of medical records, you soon get the feeling that perhaps they don’t want you to have them.  That feeling you have is correct.  Hospitals and doctors always point the finger of privacy regarding medical records.  Afterall, they are trying to protect your records from falling into the wrong hands.  But, these are your hands you say.  What better hands to hold my record than my own? True, but doctors and hospitals really would you rather not have the information.  There may be something in the record that you may “misunderstand” to be a medical error.

Also if your record has been flagged because it is under review for anything such as utilization of services, quality of care or especially any possible litigation, you will be told that your record is not available to be copied at the time you request it.

What can you do?  As mentioned in the article there are many complaints to the Department of Health and Human Services.  What can they do? Not much.

The even more difficult records that you may need to obtain are the records from your physician’s office.  It is standard practice for office staff not to allow you to have copies of your records.  They will tell you it is their policy to only forward records to another doctor.

What you must do is find out the laws in your state regarding your rights to your medical record.  The laws vary from state to state and as  Ms. Cohen points out, some states grant you less access to your medical records than federal laws allow.

Once you know what rights you have to your record if the doctor’s office or hospital refuses to give you a copy of your record, then it would be a good idea to print out the law of your state regarding patient’s rights to their medical records.  You can usually find this information by googling laws in your state.  If you can’t find it, there should be a number that you can call listed on a state’s web page or call your local library.

After you have printed out the information, then “politely” demand the right to your records. As Ms. Cohen says, you may have to get “mean.”

As I stated above, your record may be flagged because it is to be reviewed by a committee for possible misuntilitization of services or a medical staff error involving your care.

I was admitted to the ER and overdosed with anti-emetics which caused me to come back to the hospital having major spasms and tremors.  We made a complaint to the hospital and I was not initially given access to my medical records until after we went to a scheduled meeting with an administrator in which he graciously apologized.

You may not even know a mistake has been made.  Hospitals are required to perform reviews on some  records in which they find “medical mistakes” even if there was no adverse outcome to the patient.   So you may not even know there was a mistake.  If you receive a vague answer as to why you cannot receive your regards according to federal and state laws then I suggest you keep going up the chain of command until you find someone who is willing to discuss why your record is not available.  If you have to make an appointment with an administrator so be it.  Also, in the case, the squeaky wheel theory does apply.

As for physician’s records, you may have done everything you possible can do to get your entire medical record and you may only end up getting a few pages of records.  This is because the doctor doesn’t really want to give you anything and you can’t prove what was in the record and what was not.  The main thing I am interested in when I obtain physician’s records is a summary of the visits and copies of all tests.

I thought when I had to leave the health care profession 13 years ago that by now physician’s offices and hospitals would surely have complete electronic medical records. I read the other day on average many states only have 13% of their medical records converted to entire medical records.

There are many reasons for this such as lack of doctor cooperation, hospitals having many different computers that can’t communicate with each other etc.  Physicians with office practices complain that it is too expensive to convert their medical records to electronic form but they really haven’t looked at all the possibilities.

There have been models of patient centered care in which the patient owns his or her complete electronic medical record and is able to carry it with them on a thumb drive.  The patient is in charge of their own records and can give information to who they want to give information to when they want to.  The results are promising.  Patients feel much more empowered as a team player in their medical care.

The government says that all medical records will have to be converted to an electronic form by 2014.  I hope that before then this growing grass roots movement of consumer based health care will direct that electronic medical records are a necessity and that everyone should have access to their medical record at all times.

Data that will be able to be generated by web based software from electronic medical records will help patients and doctors to be able to come to the right diagnosis quicker and provide information for the best paths for treatment.  This information will also show patterns in the way hospitals and doctors practice medicine and then people will be able to truly find the right doctor to provide the best diagnosis and treatment for their illness.

I suggest you watch this video  on this page: The Quantified Patient. One man talks about his journey obtaining medical information and treatment for his kidney cancer.

Fibromyalgia, latest news

2010-01-05

I don’t have Fibromyalgia  but I do have FM symptoms.  I just read the following articles and I thought they might be helpful to some of you:

See the following information from the American Pain Foundation about a webinar on  Fibro Treatment and Management.

Also see, Fibromyalgia:  Five things you need to know and Spotlight on Fibromyalgia.

Take care,

Soulfulsilkee

American Values and Health Care Reform

2010-01-05

I just read an article about American Values and Health Care Reform and it inspired me to express my views about topics mentioned in this article.

The article is written by Thomas H. Murray, Ph.D.

He says “Most thoughtful Americans would have something meaningful to say about the values we should choose for the foundation of our system of health care. And by focusing on these fundamental considerations, perhaps we can deepen and broaden the discussion of values and public policy.”

First he discusses “liberty,” which I agree should be a value and a right we have regarding health care reform.  He mentions that this  includes” the freedom to choose a physician and the freedom for physicians to choose their practice setting and patients.”  I would go further to say that physicians should have the freedom to practice medicine in the best way possible to assure quality of care.  So many physicians are constrained now by insurance companies and governmental regulations that affect the way they practice medicine.

Examples of this are physicians who feel  like they have to practice defensive medicine because they are worried about liability.  This has lead to some group physicians practices looking at each patient as whether they might be a liability to their practice.  I experienced the outcome of this practice myself.  I found a young female physician who promised she would stick by me as long as it took to find out what was wrong with me.

I came to a follow-up appointment to find that she had already discharged me from her care.  She told me that she did not know what I was doing there because she had made it clear to me on the last visit that I should go to Johns Hopkins and she was discharging me from care.  I was very ill and I burst into tears and told her I knew that had not happened.  She confided in me that she had presented my case in a weekly case discussion, hoping to get feedback from other more experienced doctors.  She was told to “get rid of me,” and that I was too much of a liability to the practice.

Others such as doctors who treat people with chronic pain are wrapped in bureaucratic tape due to previous actions by the DEA and REM’s instituted by the FDA for narcotics that take away the freedom to prescribe medications for the maximum benefit of the patient.  Any chronic pain patient can tell you about the infamous “pain contract” with doctors and the hoops we are forced to jump through to obtain our medicine.

Dr. Murray discusses, ” Under our current system, a young entrepreneur with a brilliant idea for a new business, a creative vision that can create jobs and wealth, can’t necessarily follow that vision: if this person has a job at a large firm that provides good health insurance and has a child or a spouse with a chronic illness, the aspiring entrepreneur’s freedom to pursue his or her dream is severely limited by the “job lock” imposed by our current patchwork of health insurance.”

I’ve had personal experience regarding this situation when I was younger.  My former husband was self-employed.  I  had a few opportunities to get in on the ground floor of a start up coding consultant companies that began to flourish in the late 80’s, but I couldn’t even consider it because I had pre-existing health conditions that would have made it impossible for us to buy individual health insurance at a reasonable price.

Mycurrent  husband and I have constantly had to worry about insurance coverage since I have become ill. Due to the contract nature of his work at times, the actual company he has worked for sometimes hasn’t provided insurance. There was a stretch of time in which we were paying over $2000 dollars a month just for prescriptions.

Despite the fact that I have a terminal illness, I still haven’t been able to qualify for disability.  I’m about to talk to another attorney  about the possibility but due to SSI’s policy of giving strong consideration for disability regarding evidence of disability in my medical records for the first three years after I became unemployed, I have not been able to qualify because  I was first disabled due to a complex regional pain syndrome and we saw many physicians until 2003 when it was fianlly diagnosed.  This is an example of governmental involvement in health care benefits.

Dr. Murray also discusses values such as  justice and fairness, responsibility, medical progress, privacy, and physician integrity.    Should every American be required to participate in health insurance?  I have a problem when lower middle class and middle class people are going to be forced to buy health care insurance when they are already being taxed for Medicare and Medicaid.  Where is the extra money for premiums supposed to come from?  Many families have at least one spouse who is out of work.  The poverty line is around $11,000.  There is no significant special funded provided in this bill for middle class families.

Dr. Murray writes, “What are our obligations to ensure that the resources devoted to health care will be used wisely? Will a universal health care system provide for appropriate utilization of services while ensuring quality of care of all patients.?”  If you look at most universal health care plans adopted by other countries, quality of care has suffered dramatically.  Patients have to wait months to see specialists or to have surgery.

Two years ago, I had a large deep venous thrombosis and was in the hospital for a month.  I read posts by people in the U.K.  and other countries that were still having complications from their DVT after two years.  Some of them were still waiting to have surgery.

Dr. Murray discusses The Emergency Medical Treatment Act  which requires that emergency rooms provide treatment without regard to ability to pay. Have we done enough with our health care system to provide for human decency when as Dr. Murray states, ” According to the Institute of Medicine,20,000 people a year die for want of health insurance. Thus, one of the key challenges of health care reform is to make certain that appropriate care is available to every member of our community when needed.”

What is the definition of appropriate care?  With the current health care system many people do not receive appropriate care.  The problem with Universal Health Care is that “appropriate care” only means that everyone has access to care.  This country already has a shortage of doctors and with the initiation of Universal Health Care many doctors will abandon ship.  This will leave physician assistants and nurse practitioners to provide for much of primary health care given to patients.  They will be overworked  and underpaid.  There will also be a shortage of people who want to work in a system where there are long lines of sick patients to take care of and low wages for their efforts.

Also, specialists will be more scarce and to try to save money, the healthcare system will prevent patients from seeing specialists as much as possible.

If you don’t believe me, read stories of chronically ill patients who have tried to receive good health care through HMO’s.  If you are a healthy person, HMO’s work wonderfully.  You only need to see a primary care physician and there is little out of cost expense for preventative medicine.  Chronically ill patients and patients who are seriously ill cost the system more money.

I use to review records for quality of care in HMO’s and I saw many cases of primary care physicians or usually a physician assistant or nurse practitioner putting off appointments for patients to get in to see a specialist.  Also, abnormal test results were often overlooked and not discovered until two or three visits later.  You will see with any program of universal health care that health care must be rationed so expense procedures and tests will often be delayed.

Dr Murray states, “But if everyone is to receive care when it is needed, fairness and responsibility also require that everyone participate in financing it. In its 1993 report, “Genetic Information and Health Insurance,”4 a task force of the Human Genome Project’s Ethical, Legal, and Social Issues Working Group proposed the concept of universal participation. Insurers who recoiled at the idea of universal access accepted universal participation as a legitimate goal. To them, universal access meant that healthy people could skate along without paying any premiums — until they got sick, at which point insurers would have a legal obligation to enroll them and pay their medical bills.”

Everyone can see the obvious problems that arise with that system.  Dr. Murray continues, ” Only people who expect to file insurance claims would voluntarily buy policies. A policy of universal participation eliminates adverse selection. And “universal participation” is a more accurate and inclusive term than “universal mandate,” which addresses only the individual’s obligation, not the national commitment to assuring that care will be available when and where it is needed.”

Len Nichols, director of the Health Policy Program at the New America Foundation, recently invoked the Old Testament in discussing stewardship. ” When food is more than sufficient to feed all, allowing some people to starve is indecent and represents a failure to live up to universal moral duties.Dr. Murray writes “To Nichols, the principle concerning the availability of food in Leviticus should be applied to health care today: just as the gleaners of Leviticus should not starve, so people in need of basic, effective health care should not be allowed to suffer and die. Stewardship requires us to be mindful of the basic needs of others and of the power and responsibility we have to use the resources in our control to meet those needs.”

He says “Stewardship therefore requires that we pay scrupulous attention to quality, efficiency, and cost-effectiveness — or value, to use the market’s sense of the term. The evidence that we do not get good value for our money — that our health outcomes fall far short of those in many other countries, that regional variations in expenses do not track variations in quality, that our hospitals too often fail to ensure consistent adherence to practices known to enhance quality (such as hand washing) — is overwhelming. Everyone entrusted with the leadership of our health care institutions and with the allocation of our health care dollars has an obligation to be a thoughtful steward of those scarce resources.”

Will the government be able to initiate such programs to ensure quality of care? As I have stated before, there was  a program the government initiated through the Health Care Financing Administration that contracted a company that I worked for to do “peer review” screening of Medicare, Medicaid patients  by reviewing their medical records for proper utilization of services, proper coding of diagnoses to insure accurate billing and most importantly screening for quality of care issues.

I pre-screened these records for physicians and then the physician would review the records with potential problems.  In many ways the program fell short. Within the 10 year period that records were reviewed, fewer and fewer records were selected due to budget constraints and pressure from lobbyists.  I believe the fact that the program  existed did improve over all utilization of services and quality of care in hospitals.  Unfortunately, the government abandoned the program.

Also, very few physicians or hospitals were actual sanctioned at the state level even though some major patterns of poor quality of care were found.  Also, results of these studies as well as any quality review that hospitals and physicians do within their hospitals and practices are “protected” from public viewing.

The rationale behind this practice is that physicians or hospitals would unfairly be targeted due to unavoidable mistakes and that if results were given to the public, doctors and allied health care personnel would be less likely to participate in quality review.

First of all, I think participation in quality review should be mandatory.  The patient is being provided a service.  Therefore they are the true customer and deserve to receive information regarding performance standards.  Too many doctors and hospitals mistakenly think that the insurance company is their customer because that is who pays them.

Physicians say that practicing medicine is different from any other service such as providing tax information, car repair, etc. but the fact that they do provide a service to their customer, the patient, should allow for patients to be given information about quality of services so they know who may be able to best serve them.

I don’t think physicians should be penalized for every mistake they make but as baby boomers are getting older, I believe they would demand the same kind of service that they have come to expect in other areas.

I think that it will take a long time to  enact universal health care.  The government is trying to plan it so the entire universal health care program is not actually enacted until after the election of 2012.  But, I think people are already being fed up  by governmenal interferance and will not welcome even by preliminary actions because the country is in such a difficult mess as it is.

Dr. Murray states, “The bill likely to emerge from Congress will probably do a better job of moving us toward universal participation than of ensuring proper stewardship of our health care resources.”    Perhaps, repitition of services can be eliminated.  That contributes in a major way to cost of health care.  “Proper stewradship of health care resources?  I seriously doubt that will happen with a federally governmentally run health care system for reasons I have explained above.  Also, consider all the bureaucracy that comes with governemental intervention, constitutional issues and the program being able to work with state laws regarding health care.

It will be a very interesting endevor.

About Dying

2010-01-04

Today has not been a good day.  I’ve been having problems with pain and  I am lingering in depression.  I was telling Selch that my medication helps treat many of my symptoms but it can’t take away my disease.  My illness is like a dark invader who is always with me.  I feel him behind me.  Sometimes his dark hands rest on my shoulders.

There are times when I feel more freedom my illness  such as when I am praying.  My prayers are like a shield that guards against unwelcome thoughts.  In the best of times, I am with my Ishta (the desired form, the aspect of God that was given to me by my spiritual teacher.)  Listen to  Loreena McKennitt’s  Dark Night of the Soul.  It is a good description of the feelings I sometimes have.  The poem was originally written by St. John of The Cross, On a Dark Night.

Sometimes in the midst of a wonderful day-dream, I gradually see a small dark thread.  As I get closer, it becomes a long dark ribbon.  I know that it is my connection to death. I’ve considered touching it or perhaps even grasping it with a gentle tuggle.  Perhaps, I will do that someday.

Even though I have a terminal illness, no one can tell me how long I have to live.  It isn’t like some forms of cancer in which the doctor can make a determination based on survival rates.  This dark spider lays her “eggs” (sometime tau bodies) in various places within the frontal and temporal lobe.  No one can predict which neurons will die.

When I received a letter from my doctor’s office and Selch read those words Pick’s disease (FTD) , it altered my sense of physical self for the rest of the time I have left on Earth.

My life  has been filled with good times and bad.  There have been times when I was up to my neck in the mud of Earth immersed in life.  Experiences such as motherhood, marriage and career have drawn me into the same world as everyone else but at strange unexpected times I  have this sense of being on the outside looking in.

We all have to die and to find out that I will be living on the Earth a shorter amount of time than many of those I love dearly does make me feel sad.  Yet, now I have a sense that I may be going back to the place that I belong.

So, I do not fear death itself.  I call the dark presence an invader because I did not invite him to come and he draws physical life force from me pressing on my back forcing me to painfully exhale life energy.

We are not only our physical bodies.  I think what I fear more than death is the continuing experience of a faulty interface that will gradually  keep me from communicating that those that I love.  I’ve asked Selch if I will be able to find a way to tell him I am still here.  He says he will always know that I am here until I have departed from this life.

I have lost many things over 13 years of having a chronic pain syndrome and then five years of having symtpoms from my degenerative brain disorder.  I do not have  what people call their personal freedoms.  I’m not able to drive, I can’t do activities of daily living.  I have apathy about doing the most simple things  so I have to be constantly reminded even to drink water.  Yet, I am able to still read articles and stories on the computer and type on the computer.

As I mentioned before, the disease  has its own special design of destruction for everyone that it touches.  So, it is hard for me to explain to people  how disabled I actually am because I am still able to write.

In the last month, a few people who I know who have FTD have fallen several steps down the stairs of functionality.  It is hard to find anyone with FTD who can communicate.  I feel like there are a few of us are clinging to a lifeboat and when one of us slips down, it is a major loss.

Selch reminds me that this does not mean that the same thing  will happen to me but for me each time one of the members that falls off the raft,  is  a ray of hope has disappeared.

Before I started this post ,I read an article,  Hard Choices for a Comfortable Death: Sedation. The author of the article writes about his discussion about intraveneous “terminal sedation” with different doctors who are taking care of patients who are dying  in various hospitals.  The process of  IV “Terminal sedation”  involves bringing people with a terminal illness into the hospital, some who have been receiving home hospice care, because they are have extreme discomfort that can’t be managed by home hospice.

The doctor has a lot to consider in these situations including how the family feels and  previous wishes of patients to die at home with their loved ones that were made before they started having intolerable pain.

I’m not sure about how I feel about IV terminal sedation.  Many doctors argue that it is the disease itself  at the end that kills the patient, not the pain medication ,that they become tolerant off  in a short period of time.  For instance, how would that work for people like me who are already considered “opioid tolerant” meaning that I have been treated with narcotics by a physician over a long period of time so it requires a higher dosage to treat my pain.  Then I wondered if once people who are opioid tolerant are undergoing  IV sedation, are they still feeling pain at some level?

Many times during terminal IV sedation, the patient is not given any fluid or nourishment.  The physician explains that it helps the patient to rest more peacefully because the body isn’t stressed having to process liquid and food.  But, are they actually being “starved to death?”  These are questions I can’t answer.

I have been under IV sedation many times for many procedures.  Several times IV sedation was considered necessary for the doctor to give injections that contained pain relieving medication into my spinal nerves.  I received 8 course of IV sedation when I was in the hospital two years ago  for a month due to an enormous  deep vein thrombosis.  Those  attempts at IV sedation were not very successful in treating the pain caused by the procedure because the doctor wanted to give me less IV sedation because I was on a high dosage of pain medication.  I wish sometimes that chronic pain patient’s could carry a pocket pain management doctor around with them when they needed to undergo any treatment or procedure.

It would be nice to see the cheery young face of my nice Polish doctor explaining in a very scientific yet simple to understand manner to the no nothing about pain doctor why I actually require more IV sedation.

I have noticed from my personal experience and after reading multiple  articles about children and people who are chronically ill that have to undergo multiple procedures under general or IV sedation. They  are more prone to nightmares which involve removal of body parts, horrible creatures performing procedures, etc.  I have several dreams that would rate closely whith some of the most horrific movies ever made.  Perhaps that is why I don’t bother to watch the movies, I can see something much more grueosme and life like for no money in my dreams.   Perhaps the pain that we do not supposedly feel during procedures, sedation, altered states such as comas  is stored is displayed in other mediums  such as our dreams.

To sum it up, I am not totally sure that IV terminal sedation is a total painless, uncomfortable way to spend your last days or weeks on Earth.

Obviously, it has benefits for the family because they don’t have to see their loved ones suffering but on the other hand they are unable to talk to them before they die.

That brings one other thing to mind.  When we appear to be not there are we really still there?  It is something I’ve discussed before and I’m sure I will discuss again.

Bye for now