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Old 04-13-2003, 08:16 AM   #1
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Post Frontotemporal Dementia/Pick's Disease

Hi,

My godmother, who has basically been a mother to me, has been suffering from this from a while, but it was just diagnosed (very late) earlier this year. I wanted to find other people to connect to. The thing is, she's 56, I'm 23. I don't feel grown up enough to deal with this, but there's no one else. It's also hard not having peers I can really relate to on this. Most of my friends have living healthy parents, but my mom and godfather are both dead, and my dad lives far away and we aren't close at all.

Thanks,
Tara
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Old 04-14-2003, 07:57 AM   #2
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Hi Tara,

WELCOME !!!

I correspond with another person whose husband has "Frontal Lobe Dementia" (on another board). It is lumped into the AD catagory (unfortunately) and does effect younger and younger people, (than the usual AD sufferers). The treatments are the same for this disease as for AD. My friend is only in her 30's and she has 3 children and is also struggleing because her husband was their only means of support; and, he is only in his late 30's early 40's. But, the good news is that thru the support that she is getting from her doctor(s), her husband is doing much better on his new medications now.

You need to get hooked up with others who know and understand what you are going thru at such a young age. Try your local community Alz support groups and hunt thru your computer's browser to find on-line groups who you can talk to. (leave messages and chat with).

My prayers and best wishes go out to you.
Hugs,
Gizmo
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Old 04-14-2003, 04:40 PM   #3
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Gizmo,

Thanks!

Do you know what kind of meds your friend's husband is on? The doctors here, and the websites I've seen, say that they don't know of a pill that can help.

Tara
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Old 04-15-2003, 09:48 AM   #4
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Tara:
Hi! I read your post and just wanted to say you are not alone. My father has had Alheimers for almost 5 yrs and has gotten really bad lately. We were also recently just told that he also has Lewy Body Dimentia.
My father also got Alzheimers in his 50's which is very young. I am 25 and I know what you mean by everyone of your friends parents are well and dont understand how it is to deal with and what you are going through.
What stage is she in? If you have any questions at all please let me know. I have been dealing with this for awhile now so I can answer any ?'s you may have.

 
Old 04-15-2003, 09:58 AM   #5
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Dear Tara,

I am sorry that I can not give you specific discriptions of the exact drugs and dosages my friend's husband is on. All I can say is that each and every case is different; and, that many of the drugs that are sucessful for Alzheimer's are also used for this disease.

Drug therapy should be highly monitored, "titrated" (adjusted) and personalized for every individual. This is why I highly recommend a good group of trained specilists or physicians; preferably one that has a lot of experience in the field.

I can tell you however that my friend lives in CO. and was contemplating a move back home to Idaho (close to where I live). That way she could be around family and friends to support and help her in this most difficult time. However, due to the wonderful support and help of the doctors that she has found and the drugs that her husband is on (are so successful in maintaining his condition); that she has decided that her husbands medical care is so extreamly important that she is not moving back home, and has decided to stay with the good doctors that she has found there. (Many, many miles away from friends and family). That's how important good medical care for her husband is to her.

Anyway, she has found that when she calls home, most relatives don't even understand what she is going through. And, would not be able to understand and help as much as she can at this point (from the knowledge and understanding of his problems, that she has now gained from her own experiences and research). And, she also feels that she could never replace his doctors and their care for him.

One thing that stands out in my mind is the fact that she also (dispite her already huge burden), volunteers at the local Alzheimer's Center and is trying to make this of national interest for Congress. The fact that so many younger people are hit with dementia and Alzheimer's at a very young age. Many are like she is. Cut down in the prime of life, at a time where there should be a bread winner; but, that bread winner is hit with such a mentally debilitating disease.

This is happening to younger and younger people, and just doesn't effect seniors any more.

My very Best to You,
Giz
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Old 04-21-2003, 08:24 AM   #6
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Noelle,

Thanks for writing!

I don't know really what stage she's in. She saw a neurologist who diagnosed her, but that was months ago and he hasn't seen her since. She's in an assisted living home there. The doctor there, who she's been to twice, has no idea what Pick's Disease is, or so it seems to me. From the websites and from what her doctor signed for her insurance company, it seems like it's a terminal illness. The websites said the average life expectancy was 2-10 years after diagnoses. The doctor at the doesn't think it's terminal, she says she'll have nearly a normal life span. Have you ever heard anything like this? I think she has no clue and hasn't bothered to look it up and assumes she knows. "She's so young," she said about my godmother. From the websites, she's at exactly the average age!

Anyway, she can still walk and talk. She can dress herself if she manages to stay focused, but she usually doesn't. She can't really have a conversation but we can have exchanges. She's incontinent, but she can tell when she's gone to the bathroom. She can't work the bath tub, either has it burning hot or totally cold and usually lets it overflow. She can't write or type at all any more, except her signature. In general she's very aware, though, and she doesn't seem to be paranoid or anything.

I still feel like I don't know anything about the disease, I mean, I've seen her deteriorating, but not what's happening inside of her, how long it will be, how it will start affecting her internally. Did you find a good source of information or a doctor who really knows about the illness?

Tara
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Old 04-21-2003, 02:16 PM   #7
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Dear Tara: If you type frontotemportal and/or Pick's Disease into your 'search', you'll find all the info you need. Sad to say, but most doctors don't have a clue about these diseases and what's involved in being a caregiver. You'll just have to start looking for a doctor who has some experience in the field. Good luck and keep posting, it will help you to cope.

 
Old 04-22-2003, 08:42 AM   #8
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Dear Tara,
Talked to my friend last night. She says that her husband is on 12mg of Reminyl twice a day. And, he has been on that for a few months now. And, it is really helping him. (He was out mowing the lawn yesterday!). You should talk to your doctor candidly about drugs, and the problems with day to day living and care issues. And, keep good accurate records so that you can keep your doctor informed of the progress or lack there of.
My best to you,
Hugs,
Gizmo
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Old 04-23-2003, 07:18 AM   #9
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D'oh, I just erased everything i wrote!!

I wanted to say thanks,

also, do you think it would be okay just to call doctors in her area, and ask them if they have any experience with it? The doctor at the Home doesn't even know what it is, like I wrote before, and she didn't seem like she'd be open to being informed by me. Her old doctor is a bit too far, since I don't have a car.

Anyway, she's for sure in a much more advanced stage than your friend's husband, but I would like to find out more about that drug. She was on a different one before, and it didn't seem to help, and the doctor didn't think of anything else.

Tara
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Old 06-02-2003, 02:17 AM   #10
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My dad has Pick's disease (not AD). I'm now 22 and He was diagnosed at 53 (I took him to see a neurologist because he had developed some unusual habits) and now at 56 he doesn't respond to anything. My parents divorced when I was 2 and I always lived with him. He is my only family in this city and sometimes I don't think I can handle this. But Like you I have to because there is no one else. All my friends went off to college just as he was diagnosed, so while they're going to parties, being carefree, I'm watching my father become a shell of his former self with out a soul (besides Doctors) to talk to. He walks around non stop, staring at the ground, he can't even talk anymore. The Meds don't seem to work what-so-ever, as they were designed for AD, and since there is not any medicine specifically for Pick's (that I know of) this is not a surprise. It's truly heartbreaking. I totally know just how you feel. Hang in there! If there are any questions I can answer for you I'll do my best.



[This message has been edited by greena (edited 06-02-2003).]

 
Old 09-08-2004, 08:04 PM   #11
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Re: Frontotemporal Dementia/Pick's Disease

Hi Tara,
My Mom has Frontotemporal dementia, and it sounds as though she and your friend are at the same or at least close stages of the disease. Like your friend, she is incontinent, can no longer take care of her own personal needs, can't write or read, etc, and of late has become much like a young toddler who can stay focused on anything for any time at all, and is always playing in her room with her jewelry, now. She becomes more and more withdrawn into her own little world, and less and less able to communicate with me. She doesn't understand much of what I say, anymore. She laughs and laughs, and seems to be having the biggest time of her life, much of the day, though. She has recently started to talk gibberish and laugh with her own image whenever she sees herself in a mirror. Spends hours before the mirrors in her bedroom, laughing, now, where she use to watch television, after she lost interest in anything else, like yardwork or housework.

She was first diagnosed as having a bad case of depression in 1998, a year after the death of my father, when she started talking and leaving out the first part of what she was talking about as if we could read her mind. She would also say the wrong word for the one she meant to say, but would know immediately that she had done so. Still, she couldn't seem to find the word she was looking for. Mom was then 65, which seems to be a much later age than most on here have mentioned. It is possible she had it longer as she was caring for our father who had a stroke for 5 years before his death, and he would make motions to us that she was crazy, which we now realized he was trying to tell us she was doing odd things, or something. At the time, we thought he was just being impatient with her, as he was a man who expected you to move when he wanted something done. It was a year after the diagnosis and after several more tests had been done, that she was then diagnosed as having Alzheimer's disease. Everyone we talked to who had any experience with that disease in their family, gave totally different characteristics than what Mom was then experiencing. Still, we accepted what the neurologist said for another year, and then took her to another neurologist who immediately told us that she did not have Alzheimer's disease, but a rarer form of dementia which he told us was called frontotemporal dementia. He explained that it affected the front temporal area of her brain, and in Mom's case, the right side. He said it would progress over a period of time just as Alzheimer's did, but in the reverse, as symtoms go. That those symtoms that affected an Alzheimer's patient first, would affect her last, and vice versa. It is, however, a terminal illness, with no particular medications for it expressly, available at this time. Mom had been on Aricept, and it made her have obsessive behavior, especially about food, and she ate and ate and ate and gained a considerable amount of weight in a very short period of time. They tried her on another, later developed medication (which I can't recall the name of at this time) for a short time, but she had trouble with retaining water until her feet hurt when she walked. She is now trying Reminyl, but hasn't been taking it but three weeks. Whether it will help or hinder, one never knows. Anything I have read on FTD has said that medication for Alzheimer's was not helpful for FTD patients, and could cause more harm than good for its use. I think the doctors just feel they have to try whatever they can to help. Her neurologist says that he has had only one other case of FTD in his 25 years of experience. He seems to want to know more information from us, than he is able to provide us with. Not saying anything against him, mind you, only trying to point out how rare the disease is.

Well, I have run on and on and on, but I can't tell you how much it means to me to finally meet someone who is also familiar with this rare dementia.

Bonnie

 
Old 09-19-2004, 07:47 AM   #12
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Re: Frontotemporal Dementia/Pick's Disease


Last edited by TUFFIE1; 09-20-2004 at 01:56 AM.

 
Old 10-09-2004, 08:40 PM   #13
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Re: Frontotemporal Dementia/Pick's Disease

Hello,
I am new to this group, but am comforted to know that I (39) am not alone in this journey. My mom (61) was diagnosed with FTD/Picks disease this April, after MANY years of doctors visits, pills, and misdiagnosis's--sad to say.
She used to be a wonderful cook, loving mom, wife, and friend. She now has lost the ability to communicate at any level that is understandable, has, over the years of not being properly diagnosed, lost most all of her friends, and cannot cook at all any more. These are just a few of the many things my mom has lost.
Myself and my dad are the only 2 that are taking care of her. It is very hard for my dad. He wants to help her by himself, but it is very wearing and taxing on ones nerves. I am looking for anyone in the CT area that may be involved in a support group or someone that knows of a support group for FTD's in the northeastern CT area?
If any of you can shed some advise my way--I would look foreword to the friendly words.
Thanks

 
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