Archive for the ‘FTD’ Category

Fresh spoor

2011-11-20

I follow as closely as I can the tracks of my silkee as she wends her way along the strand.  The call of the sea has been strong of late, as she is suffering most grievously here on the shore.

Shortly after the previous post, some nine months ago, she began to have painful spasms in her throat.  Soon she could not eat normal gluten-free food.  She had to go to a soft food diet.  I took her for an EGD.  A few days before the procedure, she began having a different kind of chest pain.  We told the anesthesiologist, and he demanded a cardiac workup.

Off to find a cardiologist, who found low to moderate blockage of one cardiac artery, and prescribed a vasodialator that kicked off abdominal migraines (twelve to eighteen hours of non-stop, uncontrollable vomiting).  Then another med, and a third, all triggering abdominal migraines, before she dropped her as a patient.  The GP refused to prescribe her abdominal migraine meds, because of the heart condition.   She was having ten  to twenty episodes of cardiac pain a day, sometimes passing out, popping nitroglycerine pills and enduring the resultant headaches.  Off to find a second heart doc.  Insurance refused to pay for an arteriogram, we waited to get one done as part of a research project.

By this time she was barely holding on, the cardiac pain and fatigue were so severe, she was unable to do anything:  write, read, watch TV.  Her depression worsened.  Her FTD was getting worse.  Before, she had a wall up to keep out the unwanted thoughts generated by the dying neurons in her brain.  She has practiced for fifteen years a Theravada Buddhist mental culture, anna-panna-sati, mindfulness of in-and-out breathing, the Burmese Forest School version, brought to the United States by G. V. Desani.  She has also her japam, and ishta as a bhakti yogini.  These kept up the wall for years.  Now the wall came crashing down.  Nightmares happened while awake as well as in sleep.  Hallucinations occurred, quickly recognized as such, but disturbing, nonetheless.  She sometimes feels abandoned by God, and has to fight through her own dark night of the soul.

She began falling, and re-injured her knee, repeatedly.  This kicked off pain crises involving her RSD.  Her pain  has been out of control for months.  She now must use a chair-side toilet, as the bathroom is too far away for her to walk.  Other, new pains appeared.  Intense, sharp, deep joint and bone pain; greatly worsened fibromyalgia-like pain.

Cardiologist number two had no clue about how to treat cardiac angiospasms.  I did the research and recommended a treatment plan for him, which he prescribed.  At least he finally gave the approval for the EGD.

The EGD found no pathology other than mild irritation of the lining of the esophagus and stomach.  Smooth muscle spasms again.  Again, GI had no clue of how to treat it.  Referred her to other, useless specialists (we could do some tests, but we couldn’t do anything to treat you, regardless of the outcome of the tests).  Twenty minutes on the internet yielded therapies apparently beyond their ken.  Now off to find a doctor smart enough to prescribe them.

Her heart pain is now fairly well controlled, using the beta-blocker, metoprolol.  This med also eased the nightmares that she has suffered for years.

Her throat spasms are worse, she cannot have even soft food.  She’s on a liquid diet, and sometimes has problems even with that.  Cooking was a way to show her love, now that is gone, too.

Typing is more difficult for her, neurologically.  So we adapt.  She will tell me what she wants to write.  I draft, she comments, and we repeat until she’s ready.  This is the first product.

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.

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.

Memento Mori

2010-03-29

Today the effort should be done,

Who knows if  ‘morrow death will come?

– from The Word of the Buddha

Since antiquity, serious thinkers have kept reminders of their mortality close at hand, to help free their minds of earthly bonds and distractions.  Frequently they would be portrayed holding a skull, or having one on their desk, their memento mori, remember that you will die.

To the Anchoress of Sterling, they come unasked.

The Anchoress sat working by the window, next to the new basket of spring bulbs that are vigorously sprouting.  The Anchoress turned from her squint and spoke to me.  “For the past three minutes I lost the ability to write.”

“How so?”

“Three times I tried to write a note.  Each time, when I looked at it, it was as though I was looking at a foreign language.  I didn’t know what the letters were or what the words meant.”

“Is the inability gone entirely now, as though it never was?  Or, are there remaining effects?”

“There are remaining effects.  I am repeating letters too many times when I spell words.  And I am confused, still.”

After more pointed questioning, she asked, “Do you think that I am going to lose the ability to write, permanently?”

“Yes.”

“Then I’ll just move on to dictating, as we talked about.”

“It may not be for a long time yet.  You’ll have better days, and worse.”

“It’s not how I thought it would be.  I thought it would be there one minute, and then it would be gone.  But it’s more complicated than that.”

“You mean thinking that you’re writing someting correctly, and it being wrong, and then realizing that it’s wrong.”

“That’s it.  It’s exactly like you said, What was the word?”

“Interface.”

“Yes, it’s exactly like an  interface problem.  Like with the computer.  I know what I am trying to say.”

“But it just doesn’t come out right.”

“It’s very upsetting.”

“I know.  And scary.  I think we need to concentrate more on the more important things, while you can still write, and spend less time on the unimportant.  Only do the unimportant things after you are unable to make progress on the important work.”

“You’re right.  But there are some things I want to do.”

“It’s important that you follow your interests.”

“You’ll have to remind me, prompt me, because I can’t remember.  You’ll have to come close and sit with me, and help me along.  Once I’m writing, I love it and I can lose myself for hours.”

“I know.”

“It’s strange that you can have something be so important emotionally, that you are reluctant to approach it.”

“But it’s a very natural response, a paradox.”

Philippe de Champaigne, Life, Death, Time

Vanitas, Philippe de Champaigne , 1671

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.

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.

Giving your symptoms names

2009-12-18

Any one with chronic pain or chronic illnesses knows that to get by it is best to maintain some sense of humor, no matter if anyone else “gets” it, you know what you mean, that is all that matters.

I saw this cute post today:

Have you named your illness symptoms? That may sound like an odd question, but there are some very good reasons for giving your symptoms names. One of them is this: when you give one of your symptoms a name, such as Gertrude or Elmer, you separate yourself from it. When you do that, you are much less likely to identify with it, which makes it possible to step back and see ways for dealing with it and managing its effects on your life that you otherwise couldn’t.

Here’s an example of what I mean: if you have a severe migraine, you may say to a friend or to yourself that you’ve been having awful migraine pain. But when you do this, you can easily feel like a victim. If instead, you tell your friend or yourself that “Sylvester” has been acting up and making himself felt, you don’t make it personal, so you are much less likely to feel like a victim.

A related benefit of naming your symptoms is that it allows you to communicate with them. You can write to them and tell them how they’ve affected your life, and you can tell them how you have felt, and continue to feel, with them. When you do that, you will probably find that you feel a sense of relief and even freedom.

You can also talk to and even have a conversation with “Sherlock” or “Agnes” (or whatever you’ve named your symptoms). When you do, besides telling them how you feel about them, you can ask them if there is anything they want you to know. You can ask them what are the things you do and the situations that make them worse and you can ask them what changes you can make to lessen their severity and minimize their impact on your life.

End of Post.

If people with multiple personality disorders can do it, we should be able to be as equally creative or more.   Illness may narrow your abilities to do certain things but it gives you an opportunity (when you are not trapped in a whirlwind of pain and unwanted thoughts) of time to reflect and open your mind to possibilities like when you were a child looking at the stars or the clouds.

I read recently that physicians are finding some people who have FTD while they lose their ability to process numbers etc. are becoming more creative and are more able to express  themselves artistically.  There are many ways to be artistic: painting, drawing, writing, collaging, making jewelry, etc.  I participate in something I call creative television watching.

I love to watch Turner Classic Movies.  Sometimes when I am watching a movie for the second, third, fourth time, I imagine what it would be like if they re-arranged the furniture, if the guy hadn’t gotten on the train, or if he had gotten on the wrong train or maybe the train didn’t show up at all.  After a good movie often I think about the movie and the characters, imagining what might have happened  after the end of the story, an entirely different story perhaps.

I think about possible future inventions and one gadget I would really like would be something that connects to your brain patterns and to my favorite movie so that I am able to take the characters and create additional scenes and plotlines.

You might think I have too much time, but my time like everyone else’s time is limited.  I just know that my curtain call for this life character is sooner than I use to believe.  I wonder when you  leave off stage does someone direct you to the right or the left or do you just stumble out into the audience?

Back to the naming illnesses.  I think I’ll give the name game a try.  My father use to call me Myrtlerayleenajane.  There’s a few names to start.

Visit with FTD Research Specialist

2009-12-04

Monday, at 8 a.m. sharp I arrived at the office of a physician who does research in FTD.  Selchietracker as always my faithful companion accompanied me.  The physician’s office is affiliated with a local medical school.  I had been to other clinics in this medical school for various reasons and not been satisfied with the physician’s diagnosis and/or treatment.

I was willing to give this physician a chance.  He had been recommended by a person at National Conference for FTD which Selchietracker attended a few months ago.

After we were escorted to his office and we met the doctor, the first thing I realized was that I had met him before.  I had worked in the local medical community for several years dealing with many physicians so I assume that I have met him somehow in that capacity.

Unfortunately, because we are in transition and about to move again, Selchietracker could not locate the disc which contained my MRI film at the last-minute when we were walking out the door.  He did bring documentation from a doctor who diagnosed me at Johns Hopkins as well as the results of the MRI and other tests as well as her conclusion and findings.

He asked us what we wanted from him, confirmation of diagnosis? Did we seek  treatment options-he quickly answered there was no treatment, or  he asked, did we need further information?

Selch explained that we would like to identify what strain of FTD I might have and find out further information about research trials, etc.

First the doctor bragged about  their extensive collection of autopsy slides for FTD patients.  Apparently they have the largest number of autopsy slides for FTD in the country.  Well that was okay but not very helpful to me since I am still the walking wounded.

Next, he put me through a battery of neuropsychiatric evaluations.  Any of you who have had to do these tests or watch your loved one with FTD complete these tests know that it is no fun to not remember simple words.  I especially fear the dreaded count back in 7′s from 100.  I can never get past the first few, major mental block.  Or the pictures you are required to draw of the connecting shapes and a three dimensional square.  My pathetic attempt looked like the work of a three-year old and to add insult to injury, he told me he was labeling my work with my name.  Come on, enough of kindergarten.

Then he did the usual neuro exam.  I know the drill well.  I could probably perform the exam blindfolded without the assistance of the doctor.  Of course, nothing wrong there except his breath.  I do wish doctors would check their breath before approaching a patient.  There is nothing like being poked and prodded and having to hold your nose.

After the exam, we discussed my history of symptoms.  He asked a few appropriate questions.  Then came the true test. What about my behavior?  Selch proudly proclaimed that despite my other symptoms commonly associated with FTD including apathy towards activities of daily living , that I was still a compassionate person who understood the affects of my illness.

Despite the fact that the physician had not reviewed my MRI and did have ample evidence from a doctor from Johns Hopkins who specializes in FTD that I did have FTD,  he proclaimed I did not have FTD because my behavior was not appropriate.

Because of my problems and reactions to nightmares, he conceded that I did probably have Lewy bodies.

For a brief description about Lewy bodies see: http://en.wikipedia.org/wiki/Lewy_body

For more information about Lewy bodies and FTD see:  http://ftdtheotherdementia.com/whatisftd.html

Selch explained to the doctor that there is a variant of FTD that has Lewy bodies.

The doctor stubbornly remarked that he had seen thousands of FTD patients (FTD is supposed to be still considered rare and it isn’t as if he is attached to a major FTD clinic, so did he mean thousands of live people or thousands of autopsy slides that he mentioned previously) and every single one of them male and female had a history of acting out and not understanding anything about their illness.

I told him that I could produce six people diagnosed with FTD who are able to attend a weekly chat and discuss their disease process.

He gave no response.

So, he wished us luck and suggested we send  him a copy of my MRI.  I think we will be heading to greener pastures.  We are moving closer to a well-known clinic for FTD patients so I think we will continue down the yellow brick road to meet Oz.

Because, because of the wonderful things a good physician does, like PET scans, etc.

I realize the best way to get a functional MRI,more complex scans  or trial treatment is to be enrolled in a study.  Am I willing to be a guinea pig?  I’ve been poked, prodded, scanned, panned, scoped, doped and have never lost hope since I was a small child.

I still firmly believe that there are many others like me that are out there but they haven’t been diagnosed.  Most neurologists don’t know much about FTD.  If depression and anxiety are the first features, then the patient is likely to do a lot of couch time.  I went to many doctors for many years before a doctor discovered that I had a complex regional pain syndrome, with a domino effect other diagnoses fell into line .

I was diagnosed with FTD because of Selch’s practice of smoothly prodding doctors to order tests needed to evaluate my condition.  Also, we have learned when presented with an abnormal lab result or other abnormal finding that cannot quickly be explained away, we will seek multiple consultations until we are satisfied with a diagnosis or have reached a temporary point where we have to stop until other doors open up in the future.

I love when we go to Manhattan to see one of my doctors.  While we are on the streets and Selch is rolling my wheelchair down the uneven sidewalks ,I always see someone with a poster that proclaims one thing or another.  I also think of those comedians who say, “Here’s Your Sign” and “You might be a redneck if…”.  I imagine rolling around holding a poster that says IF YOU HAVE THE FOLLOWING SYMPTOMS YOU MIGHT HAVE FTD SO GET HELP NOW WHILE YOU STILL HAVE A LIFE TO LIVE.

Instead I remain in my “sick” recliner, preaching to the choir.  Maybe, someday, somewhere, someone will find me.

Flupirtine: New Help for Fibromyalgia, FTD?

2009-11-22

As I mentioned in an earlier post, I bought a small quantity of flupirtine tablets from Germany. I wanted to see if it would help some of my pain that my usual opiates (fentanyl, methadone, hydromorphone) do not touch.  One type of intractable pain resembles Fibromyalgia (FM), an all-over achy pain, particularly deep in the joints, that comes and goes.  When it comes, it stays for hours or sometimes days.  It never just starts and then goes away.  I don’t know if it’s actually FM, or just another facet of my RSD.

Flupirtine maleate is a centrally acting, non-opioid analgesic that has been available in Europe for years.  It was used for lower back pain and post-surgical pain, and then for pain, generally.

Here’s the really important thing.  It also has CNS neuroprotective properties.   This is leading to its possible use for treating CNS neurodegenerative syndromes such as Alzheimer’s Disease, Multiple Sclerosis, Parkinson’s, Huntington’s and Creutzfeldt-Jakob disease, including cognition in CJD.  It might be useful for FTD treatment, too.  Flupirtine is currently undergoing FDA trials for treating Fibromyalgia.  It is also known in Europe as Katadolon and Trancolong.  It is not available in the USA, as it is not FDA approved.

Typical dosage for adults is 100mg three or four times a day, half that for children.  I’m not sure about long-term use or side-effects, yet.  Most of the information is hidden behind registration walls, and I haven’t had time to do all the registrations.

Here is what happened with my first dose:

  • 3:00 pm — fibromyalgia-like pain starts
  • 3:25 pm — took 100mg flupirtine by mouth
  • 4:45 pm — I realize the fibromyalgia-like pain is gone
  • 4:55 pm — bad headache in upper right forehead
  • 5:30 pm — took 1500mg acetaminophen and a short nap, and the headache’s gone

I think the headache is a side-effect of the flupirtine.  The location is exactly where I get a headache and feel electric sensations when I have flare-ups of FTD symptoms.  I doubt that’s a coincidence.  And headaches were reported as side-effects in a good article on flupirtine’s half-life for young, elderly, and renally-impaired patients.

PS.

I got the flupirtine from goldpharma.com, an internet pharmacy in Germany.  You have to fill out a brief medical history for a doctor to review to get the prescription.  The process was very fast, it only took a few minutes from submitting the history to get the prescription, and they shipped it the next day.  We got it in about a week.  The flupirtine came in 400mg tablets, so Selchietracker got a pill cutter, cut the tablets in half and then cut those halves in half to get the 100mg individual doses.  He thought it was kind of neat that the box of “Trancolong” also had the name in braille.  Geek.

New FTD Symptom

2009-11-12

I had a new symptom from my FTD yesterday.  I was suddenly not able to speak.  I tried.  The words were in my mind.  They wouldn’t come out.  I tried to force them out, but the mouth wouldn’t work.  Selchietracker gave me some Nameda, which seems to help my neurological symptoms.  I was able to speak after some 30-40 minutes.  These new symptoms are very scary.  I wondered if I would ever be able to speak again.  What would my life be like if I couldn’t?

Today, I participated in the Wednesday Chat for FTD sufferers at the FTD forum.  I lost track of time and almost forgot about it.  I had some trouble signing into the chatroom, so I was only able to get in during the last of the conversation.  It is helpful to be able to talk to other people who have FTD.

If you suffer from FTD, I suggest you join us on Wednesdays at 7 p.m. Central Standard Time.  For further info see the post about FTD chat on new posts under the FTD Support Forum.

I think I’ll head back to the water for some rest and relaxation.

Visit with the Manhattan Pain Specialist

2009-11-12

Blogging has been on hold while I went to see my pain management specialist in Manhattan.  He’s part of the team at Dr. Portenoy‘s Department of Pain Management and Palliative Care at Beth Israel Medical Center across from Union Square.

I am going to try out a couple of new medicines.  One is well known, baclofen.  It’s a GABA-B agonist, that will, hopefully, do some good via effects on endocrine levels.  We’ll see. I haven’t started it yet, as Selchietracker wants to get a handle on how exactly to manage it.  It has a lot of side effects, and many of those signs and symptoms of adverse reactions, I have already as part of my illnesses.  As one doctor said, I am a complex lady.

The other is flupirtine,  a non-opioid analgesic that works on different receptors in the brain.  It should also have some neuroprotective effect.  That may help with the effects of FTD killing off my brain neurons.  It’s not normally available in this country, although it has been available for many years in Europe.   It’s now going through the FDA’s obstacle course as a treatment for Fibromyalgia.  Selchietracker got a prescription from Germany, and bought it from an internet pharmacy, Goldpharma.com.

After we got back from the trip, I got an alert from the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA).  Dr. Portenoy is helping to lead a major push to improve the medical community’s education and understanding of chronic pain, so that we pain suffers will be able to get better treatment.  The launch of this effort is a report, A Call to Revolutionize Chronic Pain Care in America, by a private NYC group, the Mayday Fund.  According to the report, chronic pain is a greater burden on the health care system “than that of diabetes, heart disease and cancer combined.”

The trip was great.  We love Manhattan.  We even found a newly reopened gluten-free Greek restaurant, Gus’s, on Bleeker St just a block east of 6th Ave.  The food is good and the seats are more comfortable than our old standby for GF, Rissotteria, which is a few blocks up Bleeker toward 7th.

Looking for My Lost Bass Clef, on Celtic Moon

2009-10-28

I love music.  I’ve played the piano since I was seven.  The last time I tried to play, I discovered that I wasn’t able to read the bass clef on a sheet of music.  Also, my left hand had lost its musical memory for the bass clef.  I visualized playing the saxophone, which is treble clef, and my left hand remembered the notes.

I could not remember the most fundamental things:  notes. Like almost everyone who learns to play the piano when they are young, your piano teacher encourages you to make up funny lines to remember the name of each key and letters on the clef.  As I sat in front of my piano, my mind was blank.  I longed for those phrases I tossed aside long ago.  I opened the lid of my piano bench where I use to store trinkets, such as an an apple green spiral notebook with crazy white notes scattered on the cover, that contained my first six months of music theory.  Then, I remembered that I had put what was left of my beginning piano music in a file drawer.  Three rows of steel cabinets were downstairs in the basement.  There was no way I would be able to navigate the stairs.

When I was a girl, my teacher use to give me plastic busts of composers each year.  My favorite bust was given to me by my mother.  It was as larger bust of a handsome young Chopin with blue eyes and cornflower blond hair.  Once, when I was eight, I was having a difficult time playing a piece and I took the bust outside, placed in on the grass and danced around it.  I was wearing a sunny yellow dress then, in Texas.  But as I sat there at the piano that day, I pictured myself going outside in my house dress and dancing a jig with the crazy old Turkish woman who lived across the street.  No inspiration there.  No bass clef.

Now as I sit here typing, those childhood phrases are flooding my mind.  Every Good Boy Does Fine Always, FACE Good Boys, Bad Girls Eat Candy All Fall, All Funny Black Geese Eat.  My piano is in storage now.  But, down the hall in a small room there sits my childhood piano, terribly out of tune, its legs gnawed from a crazy dog and sticky keys from a gaggle of young nieces trying to play Heart and Soul.  Maybe it’s time two old friends got together.  Maybe I can find my lost bass clef.

Right now I’m listening to Live365 radio on the internet.  One of my favorite stations is Celtic Moon.  If you are a fan of Loreena McKennitt‘s style of music, then you should tune into this station.

What I love about Live365 radio, is they provide so many small radio stations that play different types of music.  My brother listens to it when he gets home from work.  He is also a fan of Celtic music.  But, his tastes have always been more eclectic.  I will never forget the timeless melody of Dead Skunk in the Middle of the Road which he played over and over again on his turntable.  He is the only person I know that has the entire musical collection of Focus, a yodeling foreign rock band founded by a classically trained flautist.

It’s time for me to go to an on-line support group meeting, so goodbye for now.

FTD Brain Neuron Growth as well as Death?

2009-10-26

I came across this in an article in the NY Times about FTD, and the unexpected effect of the brain’s rewiring itself to adapt to the death of frontotemporal neurons:

“In 2000, she suddenly had a little trouble finding words,” her husband said. “Although she was gifted in mathematics, she could no longer add single digit numbers. She was aware of what was happening to her. She would stamp her foot in frustration.”

By then, the circuits in Dr. Adams’s brain had reorganized. Her left frontal language areas showed atrophy. Meanwhile, areas in the back of her brain on the right side, devoted to visual and spatial processing, appeared to have thickened.

When artists suffer damage to the right posterior brain, they lose the ability to be creative, Dr. Miller said. Dr. Adams’s story is the opposite. Her case and others suggest that artists in general exhibit more right posterior brain dominance. In a healthy brain, these areas help integrate multisensory perception. Colors, sounds, touch and space are intertwined in novel ways. But these posterior regions are usually inhibited by the dominant frontal cortex, he said. When they are released, creativity emerges.

Maybe this means that I may have some areas grow and increase in ability, while the other areas are deteriorating.

Does anyone out there have any experience with this phenomenon?

The Beginning of the End

2009-10-25

I am dying.  This is a simple statement of fact.  Mature people should be able to accept this at face value, and react accordingly.  So one would think.  Instead one gets the queerest reactions.  Most deny the obvious, and say — quite without evidence or justification — that I’ll live at least ten years or more.  How convenient for them, not to have to confront anything real or unpleasant in the immediate future.

My husband set up this blog for me.  I’ll try to learn how to work it.  It will be difficult.  The interface between my spirit and my body is slowly going out.  As my brain is dying, there are episodes of “static” or storms of uncontrolled thoughts, that I have to fight hard to control.  It takes a lot of energy, just to appear normal.  I am not.  My disease is mostly invisible.  Recently, I have started to add stuttering sounds, at the end of my words, like da-da da da, or pa-pa-pa-pa-pa… for minutes on end.  Very embarrassing.   And very uncomfortable for those who want to believe the convenient lie that I’ll be around for the foreseeable future.

This won’t just be about dying.  I’m also writing a novel and consulting with an incipient start-up company to develop automated medical diagnosis software for the web.  I have opinions on politics, life, and how to improve the medical system.  I am a spiritual being, and so I don’t always have the human perspective of the world.  The spiritual view is usually quite different.   Sometimes poetry blurts out, unbidden, silly sometimes.

Selchietracker has written this to prime my blogging pump.   Channeling me.


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