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Tuesday, December 7, 2010

FTD: It Could Be worse...

...it could be raining!

“It's better to be an optimist who is sometimes wrong than a pessimist who is always right”
 
“In the long run the pessimist may be proved right, but the optimist has a better time on the trip.”  - Daniel L. Reardon 

So... everyplace I look I see the same things:

There is no cure for Frontotemporal Dementia.

There is no treatment for Frontotemporal Dementia.

There are no approved drugs for Frontotemporal Dementia.

Frontotemporal Dementia is a progressive disease.  Yadda... Yadda... Yadda... and then you die!

No matter what you call it, Pick's Disease, FTD, bvFTD, FTLD, or  Frontotemporal Dementia it doesn't matter.  At this time nobody knows much about it. Current research is just beginning to unravel the chemical pathways in the brain that lead to the atrophy of the frontal and temporal lobes. Nobody yet knows exactly what causes it, or why it happens. Doctors currently cannot even agree on precisely how to describe it, or to even diagnose it. To oversimplify it, it is known that there is some breakdown of some kind for some reason of the pathway involving Tau Proteins in the brain causing aggregations and atrophy. Not much to go on, but more is being learned about it every day.

So what does all this pessimistic crap mean to me with FTD?

1. There is no cure. OK, all that means to me is that the FDA and the AMA etc. have not approved a cure. The research is still inconclusive, and barely in its infancy.  I am sure there actually is a cure out there somewhere just waiting to be recognized. This does not by any means say that FTD is incurable, just that at this time there is no standardized approved treatment. Which leads to...

2.There is no treatment. Actually there are many treatments, but none of them are recognized to be effective at this time by the health care industry. Almost everything that is looked at in the research seems to have some beneficial effect. Seriously! If they look at exercise, it seems to help. If they look at Ginkgo Biloba, it seems to help. If they look at the drugs approved for Alzheimer's, they seem to help. If they look at other herbal remedies, they seem to help. When they look at pain killers, massages,  aromatherapy, prayer, Diabetes Drugs (Metformin), wine, sex, vitamins, hugging your pet - whatever - it seems to help. The problem is that when someone else looks at the exact same thing it does not help. Every case of FTD is different. So what this is telling me is that every case of FTD probably needs to be treated differently. Duh! This is never going to work in our current health care system where Doctors treatments are standardized, and usually dictated by the insurance companies and other medical institutions. Maybe some day there will be an approved treatment, but until then I am on my own to figure out what if anything works for me and my particular flavor of Lime Jell-O. Until there is a treatment for what causes FTD the best I can do is try to figure out if anything helps to manage my symptoms. If I am lucky something that helps with the symptoms might also help with the cause. So what if the odds are against it, and the probability is low? I have already found some things that seem to help, and some that do not. I already have started to develop an approved treatment for me - approved by me. So, do not tell me that there are no treatments available. I know better.

3. There are no approved drugs for Frontotemporal Dementia. That is simply because the disease is rare compared to other forms of dementia, and there is no economic incentive to develop or test a drug specifically for FTD. This does not mean that the drugs currently available for other approved uses are not effective in treating FTD, only that they have not been tested specifically for FTD. It does not mean new drugs will not be developed.  Which brings me to Herbal and Homeopathic Remedies.  No Herbal Remedy (and I use the term in its broadest sense) is approved by our health care system for treating anything - and that would include eating limes to cure Scurvy.  The way the law is right now in the United States if it said on a bag of limes at the grocery store that they cured Scurvy they would be classified as a drug by the FDA. Limes cure Scurvy! How is that for a dietary supplement treating a disease? To me saying there are no approved drugs is not the same as saying that there are no drugs available which would be effective for FTD.

4. Frontotemporal Dementia is progressive. What they are saying is that you get it, and it gets worse, and worse, and then eventually you die. Yuppers! To me that means if you sit around on your ass doing exactly what you were doing that got you into this mess it is progressive. I am sure that in that case it is true. Really now! Nobody can even agree on how to describe FTD, and they are out there telling us it is progressive like it is carved in stone. Maybe it is my demented logic, but I do not look at it that way at all. I do not believe that the progression is inevitable. It is not natural for my brain to be dying, and dying particularly fast in the frontal and temporal regions. Something has caused this to happen. It is unlikely it is genetic in my case, so that points to something behavioral or environmental. Well! Duh! If something behavioral or environmental can cause it, it can damn-well un-cause it too! If it can't be reversed, maybe it can be slowed down, or arrested. Nobody really knows because nobody has really looked yet.

So again -

So what does all this pessimistic crap mean to me with FTD?
What am I going to do?

For as long as I can, and as best that I can, I am going to search for things that help, and I have no intention of just sitting around on my ass waiting for somebody else to figure it out ten years after I am dead. Maybe it is futile. Maybe false hope. Maybe just something to occupy my time.  Maybe it will work. Maybe I will find something that slows the progress. Maybe I will find something that makes my day-to-day existence easier. Maybe I will find something that reverses some of the symptoms. Maybe I will find a cure. Maybe nothing will work, and I will march slowly towards that inevitable long night. In any case, as long as I can, I am going to fight! I am not yet ready to just give up and go quietly.

Do Not Go Gentle Into That Good Night

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on that sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Dylan Thomas

(Dear Rodney, Thank you. May you rest in peace. You will always have my respect. - Lee)




















...fight like a fish in a blender ...but tomorrow, I think I will sleep in...

Comments are welcome.

3 comments:

  1. Something I always remembered that Master Mayle taught me was not to fight if you don't gain anything by winning. So I say fight the good fight poppabear

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  2. thats a great post. how are you today? my mom has ftd and i'm heart set on finding a cure

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  3. You are right Lee. Its not true that there is no cure for FTD....its just that we haven't found out yet. Also I know that ultimately the body knows to heal itself....we need to believe it and let it happen. Dont ever give up....being a follower of Christ i have personally witnessed miracles big and small....its true. A bit of help from Him wont harm...wouldnt it??? Sorry to preach. May God bring you peace, strength and a cure soon.

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