Spreading the word about FTD and ALS

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sharonca

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Patricia - thanks for the link. My mother was diagnosed with Pick's disease and I found it very difficult to find information about that. In reading the information I'm not so sure it was Pick's but maybe another form of FTD. Her aunt also had been diagnosed with Pick's. Everytime I can't think of a word I get nervous! She had very spastic and stiff muscles, lost the use of her hands, couldn't plan and after a couple of years couldn't speak at all. For years and years before her speech was difficult and she was socially inappropriate (rude). She died after falling and hitting her head. The result of the fall was that she lost the use of her tongue. On CT scan the doctor said you could see the result of Pick's on her brain - shrinkage in the frontal lobe. I so wish I had donated her brain for research. I didn't show symptoms of ALS for two years after her death. Again - thanks for the info.

Sharonca
 

keptfreeinhim

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judylyne,

FTDP-17 is the only frontotemporal dementia that is exclusively hereditary. The others have anywhere from a 10% to 50% chance of being hereditary. I understand your concern. We have six children and grandchildren that I think about. That is why I need to stay involved with both FTD and ALS. Sounds like your husband's progression is similar to my husbands. We knew to watch for the very early signs of the disease since we had seen what happened with his father so I think we were able to clue in earlier to the changes that were going on. I wish you the best. Take care of yourself. I know that's hard to do when you are a caregiver. Trust yourself.

Blessings,
Patricia (Keptfree)
 

keptfreeinhim

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sharonca,

I'm sorry you have to deal with ALS. I understand your fear of Pick's and FTD when you forget a word. I think we all fear Alzheimer's or some other form of dementia when we find ourselves forgetting. Often it is just because our lives are so stressful. My husband had some bad falls after developing ALS too. One time he fell and hit his head in a parking lot; the CAT scan showed a subdural hematoma on his brain. They wanted to drill two holes in his head to drain it. I said no. What was the point? The doctors had already given him less than a year to live. Why put him through a surgery and the recovery when he wouldn't have understood the surgery or his need to be careful afterwards? His gereontologist agreed with my decision. Hope you are getting the care you need.

Patricia (Keptfree)
 

loralie

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Patricia,
I am so grateful you posted on this site.
My husband was diagnosed with ALS first (just this past fall). It is a very slow progressing kind.
Even with the diagnosis, i've been much more troubled by subtle subtle "other" changes I see and feel.
(Personality, judgement, etc.) And just this week was told he likely has the combination of FTD and ALS.
I had looked on this forum previously for someone, something to relate to ... and in your words I've found what I need.
thank you for posting. I hope I can talk more with you. I will be reading your blog/site.
Loralie
 

loralie

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Patricia,

I have so many questions:
My husband doesn't yet know of the FTD diagnosis. (I went in on my own to express concern and the physican assistant told me).
How and when should I tell him? He is early stage with this, as with the ALs, but now I can thinnk back at least four years to when subtle changes began to occur. I haven't discussed changes i see with him for fear or making him self conscious or hurting his feelings. even in earlier doctors appointments i was able to talk around it by mentioning concern about frontal lobe.
 

keptfreeinhim

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Loralie,

You are walking a different path now and need all the help you can get. I am here whenever you need someone to share with. The position you find yourself in can be a very lonely one.

I think your husband has the right to know what is happening to him. If he has a mild form of cognitive impairment or dementia, he may not understand what you tell him, but it is important for him to know. He may deny it or even forget that you told him. That is normal too. My husband recognized some of the changes he was experiencing. But there were many that he couldn't see. Dementia of this type has a way of insulating the person from being aware of their problems. In a way that is good for them - it protects them from all the pain. For you it can make it more difficult.

Now is a good time to make sure you have all your legal documents in order; power of attorney, health care advocacy, and will. You don't say how old your husband is. Is he on disability now?

Please feel free to email anytime.
Patricia (keptfree)
 

loralie

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08/2008
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Patricia,
Thank you. I would like to email you ... I am new enough to this site that I don't know how to find your email address!
I clicked on your profile and it says I don't have access to it ... I am not sure why. I have been able to get on your homepage and will return to that many times I am sure.
I tried to add you as a contact and i was told again i don't have access to the page ... I guess I better take time to understand how to use the site. I feel lucky to have found you.
Loralie
 

keptfreeinhim

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Loralie,

I tried to send you a personal message through this site, but they said you have your account set up not to accept personal messages. I was able to accept you as a friend - contact. So you might be able to do me now. Try to set up your account to receive personal messages and I can send you my email address that way.

Patricia (keptfree)
 

Al

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Loralie, you need a few more posts to be able to PM people. This keeps out the spammers.

AL.
 

loralie

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Messages
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CALS
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08/2008
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finger lakes region
Patricia,

I know you are right: it really does insulate them. He is in very good spirits. He's generally cheerful and agreeable. Part of it is that he has a good attitude and part of it, I think, is that the mild FTD is protecting him. It is mild, but I can now think back several years and remember/find changes. It is kind and good of you to keep educating and communicating. I understand what you mean about doing it in part for your children and grandchildren. How are you doing now?
I'm writing in part to get more posts iin here so I can start having access ... and so that I can eventually get access to your email address!
Loralie
 
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