Posts Tagged ‘living with FTD’

Fresh spoor


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.



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.

Gifts from a terrible disease


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.

For Those Who Are Not Heard, Part 2


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


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

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

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

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

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

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

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

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

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

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

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

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

The Light and the Tree


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

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

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

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

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

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

LIVING WITH FTD: People spreading the word about FTD.


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 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.

What is missing in this picture?


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


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


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.