Old 08-17-2007, 08:30 AM #16 (permalink)
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Default Brisk reflexes

For those of you with loved ones diagnosed with both frontotemporal dementia and ALS, I was wondering if they presented with the brisk reflexes which seems to be one of the keys in the early diagnosis?

I have very delayed reflexes, and I'm thinking this is because of the FTD. It seems to take longer for my brain to react to anything. I have to wear protection because my brain doesn't get the message in time that I have to go to the bathroom. It takes longer to identify what a sound is. So is it also possible that's why the delayed reflexes?

Just curious.
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Old 09-01-2007, 09:01 PM #17 (permalink)
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Hi Leslie, I am not as young as you. I am 60 but my husband has had ALs for 4 years. He cannot move and doesn't go out further than the yard in his wheelchair. He has been really good about this but he won't talk about anything meaningful. It has been horrid for me and our children to watch. My children mostly stay away. I used to feel young and I am starting to feel old and drained. I understand what you are saying. I have been fairly upbeat and I usually bounce back. I write to a lady who lost her husband to ALS after two years and she tells me that I will get some life back . Right now it seems like endless misery. Hang in . I hope I'm not offending anybody by being blunt. It seems that there is no way to win. Lou
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Old 09-01-2007, 09:11 PM #18 (permalink)
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Hi Lou-you have a lot on your plate right now. It is OK to be discouraged! I hope you get some relief from all your caregiving duties once and awhile. Cindy
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Old 10-08-2008, 02:49 PM #19 (permalink)
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Hi Leslie,

I mentioned on my first reply that I was new at this. I was interrupted and I am not sure it went through. My lovely wife has been recently diagnosed with FTD and ALS. I am looking forward to reafing all the impooirtant information I am finding here. My wife was on Namenda and Aricept. We stopped Aricept because it was not helping. When we stopped it, the terrible leg cramps mentioned by others stopped.

The only suggestion I have was the need for frequent physical therapy inorder to keep muscles toned up. We are doing therapy 3 times per week. In additionI do exercise with her almost every day.

Hope this is of assistance.

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Old 12-02-2008, 05:00 PM #20 (permalink)
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Default I am Marvin December 2008

I just saw this thread. How do I get to it easily?

My wife has been diagnosed with ALS and FTD. She is declining rapidly.(about 6 to 18 months)

-Practically no speech.
-very difficult swallowing
-uses walker. Muscles are weaking. It hard for to get out bed without assistance.
-she does remember things but is now a bit spacey.
-Acts irrationally at times (going out of the house alobe wihout her walker)
-Doctors say a feeding tube decision will have to be made in 3 to 12 months or less.


Are the any words of wisdom that can ease the situation.

Thanks,

Marvin
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Old 12-02-2008, 05:10 PM #21 (permalink)
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Hi Marvin. You've come to the right place. I am so sorry about your wife. There isn't much to be done as far as physical therapy goes. It can only waste her strength instead of building tone. I think the usual daily activities are best for an ALS patient and even then, this could tire her. Also medication seems to only complicate with other side effects in most cases, not all. If something is actually helping, of course I would say stay with it, but not much will help. We find that nutrition is important, so have her eat well, and keep her comfortable and loved. A good attitude and the lack of stress.... meaning eleviate fretting and panic... and you will do quite well together as a team. Help her find things to fill her days that gives her joy and purpose irregardless of her condition. I am not trying to sound like a doctor or a saint here, but just sharing my experience with my husband and our journey with ALS.M
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Old 12-13-2008, 06:32 PM #22 (permalink)
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Quote:
Originally Posted by Lesley View Post
It is my husband who is ill, his presentation was with a dementia but he also has muscle twtiching and it appears respiratory muscle weakness. Everyday is something new. His quality of life remains good but for me and my children it is horrific. This highly intelligent man is reduced to a simpleton. His mother and her brother died of ALS, we now believe his mother was also demented but not as bad as he is. He had an EMG which was "positive" a year ago but he has had very little progression of the ALS symptoms. I desperately want to find someone like me, young (I am 51 he has been sick for 4 years) and strugglling with this long drawn out painful death.
I would say your leg symptoms are pretty significant. I take my husband to a center specializing in dementia and with some knowledge of ALS but no one can really give me any answers.
Leslie,
Are you still out there and are you still looking for someone who is going through something similar?
I notice that your message was posted in 2007. I am new, and I relate to your words, and I would love to talk with you. I don't yet even know how to respond or how to post.
I hope we can connect.
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Old 12-13-2008, 11:22 PM #23 (permalink)
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Hi Loralie. I checked and the last time Lesley was on the site was in August of last year. There are I am sure, people in the same situation as yours still here. Look through some of the older threads or use the search feature. I'm sure you'll find some input.

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Old 01-16-2009, 05:35 PM #24 (permalink)
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Default my mil

Quote:
Originally Posted by Lesley View Post
Is there anyone out there with a loved one with dementia and ALS? Anyone with pure respiratory onset ALS?
my mil has als w/dementia...what are you wondering about?
i will let you know what i can...anything to help.
so sorry for your situation
sincerely,
becca
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Old 02-11-2009, 06:08 PM #25 (permalink)
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Unhappy Hi to all the people who have FTD/MND and their carers.

My daughter has just found this website and we are both learning a lot about FTD/MND and I thought I would let you know about our situation. By the way we live in New Zealand and can't find anything like this website here.
My husband Colin aged 52 was diagnosed with FTD in September 2007 after we noticed his speech deteriorating and his work (He was an Airport Fire Officer) noticed he wasn't coping with the job. Colin's speech completely dissappeared within six months. He doesn't seem to have any memory loss and can understand what you are saying. During 2008 we noticed his muscles twitching in his arms and we took him to his neurologist specialist and in September 2008 he was diagnosed with MND. Since then he has gone down hill very fast and at the moment he can't use his arms and hands, he can only walk for a short time. His neck is so bent that his chin touches his chest so needs a neck brace. Colin is having a lot of difficulty swallowing food and liquids and just keeps it in his mouth and if he does swallow anything he chokes on it. Colin was a Fireman and played rugby until he was 50, he used to weigh about 110kg and now is only 77kgs, it is really hard to watch a man like he was become so fragile. Colin spends about 90 percent of the time in bed.
We are now facing decisions which are really hard to make, like do we have a peg put in to help him take in nourishments, which will keep him going for longer.

There must be people out there who have had to make decisions like these, how did you come to your decisions? I would love to hear from anybody who is in the same situation as we are.
Cheers
Chris
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Old 02-11-2009, 10:06 PM #26 (permalink)
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Chris, I am so sorry for your husband's situation. I hope that the doctors will be able to make him more comfortable.

I have the same swallowing problem as your husband: when I get liquids in my mouth, I have trouble getting the muscles to swallow, and sometimes hold the mouthful for a long time until I am able to swallow.

I just had a feeding tube put in, and I am very happy with it, and glad I did it now. It makes it SO much easier to get food down, and is a simple procedure. It's been 2 weeks, and I forget I have it most of the time. It was a quick procedure at the hospital; they started at 9:30 and I was home by noon. The actual procedure was only about 10 or 15 minutes.

Hope this helps. Take care.
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Old 02-12-2009, 05:52 PM #27 (permalink)
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Hi Chris. Sorry to hear about your husband. I've posted a link for a newspaper article done a while back about me and some other firefighters. On the left side is a red maple leaf. Click there to see the slideshow.
http://www.theglobeandmail.com/servl...andHealth/home

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Old 02-15-2009, 05:34 PM #28 (permalink)
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Default Beth & Al

Thank you both for your replies to my message I have found them interesting. The article on the Fire Service is certainly interesting and I have fowarded it on to the Fire Service where Colin used to work.

I am not sure what Colin would do with a peg because with the dementia he doesn't know what is going on and he is likely to pull it out. With the quality of life that Colin has with MND and the Dementia we as a family think he really wouldn't benefit from having the peg. I think if he was able to tell us he wouldn't want the peg either. We certainly don't want to see him go but we don't want to see him suffer much more.

Cheers
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