Old 12-03-2003, 02:45 PM #1 (permalink)
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My father has just been diagnosed with ALS. For several years now he has had weakness in one leg but he also has quite severe memory loss. We thought he had Alzeimer disease but the progression was very slow.

Over the past year my Dad has gone from a cane to a walker & now he uses a wheelchair. He has lost strength in his other leg & the EMG showed weakness in one arm and in the muscles along his spine from his waist to shoulders. The doctor said this couls affect his memory & thought process but nothing I have read says that.

Has anyone else experienced dementia with ALS?

Thank you.

It's just Diane, not Diane67. I forgot to log in before posting.
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Old 12-05-2003, 03:26 PM #2 (permalink)
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HI Dianne

My brother suffered from als for just over 1.5 years he had the bulbar type although he never had his memory involved at all. He was quick and alert till the day he passed, I have not heard of the mind being involved as far as als is concerned but maybe some of his meds may be causing the forgetfullness. I am not sure but perhaps someone else has some experience in this area I have been trying to keep up on the sites and have not read any areas where the mind has been involved. The often cruel part of als is that while the body shuts down the mind remains clear and sharp leaving our loved ones trapped in their body. Good Luck and welcome here. Joy
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Old 12-06-2003, 08:21 AM #3 (permalink)
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Thanks Carol. I imagine I will be needing support as this thing progresses. I know exactly what you mean about wishing you didn't know about this disease. Before my Dad's diagnosed I was able to live happily in denial (ignorance is bliss) It used to really upset me when my sister talked to me about her concerns about Dad's health. I know it was irrational but I felt angry, like my sister was making him sick by talking about it. Now that we have a name for his illness it doesn't make it any easier. Now I look up ALS information and cry. I spent 2 days doing that.

My sister is a huge support to me. She faces problems head on and talks about them. I am a little slower to face things that upset me.

Thanks again to both Carol & Joy. I will probably be speaking with you again.

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Old 12-06-2003, 08:46 AM #4 (permalink)
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Hello Diane

Thanks for the posting with all that is involved with this disease it is not surprising to me to learn something more can be taken away. How cruel,
I hope you and your sister stand together as you face your dad's illness.
It is good to have the support of someone to go through this to cry with to share in all that als will bring to your life. I have never seen such a robber of souls as this disease. My son has cystic fibrosis, my daughter is a juvenile diabetic and my dad passed from throat cancer, all of the above are hard but none could have prepared me for what we faced with als.

Not a day goes by now after the care has been taken over for us by a higher power that I do not mourn for what was taken away slowly daily from my brother. I truly believe there is no other disease on this planet that could render a family and its victims so helpless.

That being said there are many here who can help to identify what you and your family are facing. Carol, Henry's wife has been a wonderful source of support for me and reading the posts here can help in a small way to know that there are others who are dealing with the effects of this horrible disease.

The bulbar type onset does seem to be the quicker progressor more than the limb onset. Although they both seem to come to the same place one just quicker than the other. This disease can burn out caregivers quickly so it is important to welcome all the help you can get and any offer of assistance should be taken seriously. You and your sister can offer your dad all the comfort you can but need to be able to keep your strength and emotional comforts in balance. I cannot stress this fact enough take time for what is important and let the little things go.

I hope to hear how you and your family are and I will keep you all in my prayers and thoughts. Joy
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Old 12-06-2003, 09:28 AM #5 (permalink)
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Thank you so much for your thoughts & prayers. I will keep you posted on my Dad's situation. It is very helpful to be able to talk to people who have experience with this horrible illness.
Thanks again.
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Old 12-08-2003, 10:32 PM #6 (permalink)
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Hello Diane
Your question about Dementia and ALS is an interesting one. My mother was diagnosed with ALS and Frontal Temporal Dementia (FTD) just over 2 years ago. Both diagnoses were proven through an autopsy. The FTD was very subtle, and involved things like my mom not changing topics in conversation, and being slow to remember things. It is a topic I have looked for information on, but it is rare. What is out there seems to be written for neurologists, I find those articles quite hard to understand. I do know though, that it is a component of ALS that many neurologists and researchers are looking more closely at, and as they look for symptoms, they are finding more and more people with ALS also being affected by FTD. I hope this info is helpful. Take Care.
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Old 12-09-2003, 07:45 AM #7 (permalink)
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Thanks Cathy. It is good to know this has happened to others. I am very sorry you lost your mother. My Dad's demential started about 6 years ago, but it was not very noticable back then. The past 2 years we thought my Dad was suffering from Alzheimer's disease. He was only walking with a shuffle at thar time. It is a horrible disease & hopefully more will be known about it soon.
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