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karenwirtanen Asked June 2011

My mom was diagnosed with ALS yesterday. Has anyone else dealt with this along with dementia?

After 6 months of several doctors, neurologists, rheumatoligists, etc mom was finally diagnosed yesterday. ALS. A very scary and sad thing to hear. It's too bad it took so long to find an answer as she has lost most of her muscle control and can scarcely communicate. I know there are devices and supportive equipment to help people with this but it's hard to convince her of the need as her underlying dementia makes it difficult to know if she really understands what's going on. Maybe that will be a blessing in the end if her mind is not totally clear. The doc said prognosis looks like maybe only 2-3 months. I'm scared to think of the end and what it entails for her. I love her so much it's so hard to think of my life without her.

EXPERT Carol Bradley Bursack, CDSGF Jul 2011
I'm so sorry. You are right to find some comfort in that her Alzheimer's will prevent her from totally understanding her ALS. ALS is frightening. Please look to hospice for her care, as they can help her with the distressing feeling of gradually losing control. The last things with ALS is the inability to breathe - one of the most frightening things for anyone. Hospice is skilled at helping people through these diseases, letting them live the best quality of life they can have - while they can. Since the doctor gives her only two to three months, she would qualify. Please talk to the doctor about this. Hospice chaplains can help you cope as you go through it with her, and with losing her to ALS.
Take care of yourself, too.
Carol

karenwirtanen Jul 2011
Hi, I wonder why my initial question said my mother was diagnosed with Alzheimers? I didn't even write that. I wrote she was diagnosed with ALS. That's happened before to me. Her dementia is of the mild variety and she does understand fully what is happening to her but it causes problems with her normal logic so she has resisted things that home health care has offered such as occupational therapy and I know it will be so hard to convince her to use the different tools the ALS center can provide. I wish, wish that common sense part of her hadn't gotten so dim. It's been really hard for her to cope with all the sudden changes in her body and I dread the upcoming months trying to explain why the new wheelchair, bed, etc are so important much less breathing apparatuses. From talking to ALS center they are very kind and I'm hoping they will be helpful in assisting mom out with these new changes. Thanks Carol for the words of comfort.

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HOUSEhold6 Jun 2013
Your story sounds soo familiar! My mother too was diagnosed with ALS and passed 6 months after she finally received her diagnosis. ALS is close to ALZHEIMER'S, so I think that is why Alzheimer's was mentioned. As you know, Lou Gehrig's is a complex disease. Not much is known about it and it seems that the statistic's are showing it is more common than once thought.
Hope all is well with you.

lindalu817 Apr 2014
when i signed up here I also put my Mom was diagnosed with ALS this site sends me updates for alzheimers I only wish my Mom was so lucky .I know both diseases vey well my grandmother had alzheimers she didnt seem to have a care in the world my Mom cries all the time because she knows whats going on with her body

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