What is Amyotrophic Lateral Sclerosis ALS
Amyotrophic lateral sclerosis (ALS, sometimes called Lou Gehrig's disease, Maladie de Charcot or motor neurone disease) is a progressive, almost invariably fatal neurological disea...
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familial ALS
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My mother's sisters have/had ALS.
My Aunt Mel has had muscle deterioration throughout her body for 18-19 years. They could never find a proper place for her disorder ...either MD or ALS. They have now diagnosed my Aunt Mel with familial ALS. In her case, the disease has progressed extremely slow. She has lost almost all function in her hands and arms along with some muscle in her legs. But is has taken a very long time to get to this point. She is still able to walk with a walker but has poor balance. It is scary to see her slowly go thru what my other aunt went through in a matter of 1 & 1/2 years. In Jan 2006 my Aunt Birdie was diagnosed with ALS. I lived with her for a summer (once it started to progress quickly). She went from a cane to a walker to a power wheelchair in a matter of 4 months. She passed away at a respite facility in August 2007. That has been the hardest experience I have had to face in my 25 years on this earth. I helped her with physical/emotional things no one else at my age could imagine doing.... My aunt and I were so close and shared similar mental health issues. We would joke how we kept each other sane at family events. And we'd always try to sneak away to chat but someone would always end up disrupting our time together. We would even be close enough for her to talk about dying with me. Mostly in a funny way but also there were times we cried. She said she would come back to haunt me and say "Don't pick up that 2nd cookie.....nooooo!!!" Haa haa. Before I left after helping her the summer I lived with her she told me maybe this was God's way of showing her what it would be like to have a 23 year old daughter because she won't get to experience that with her girls (ages 10 & 13 when she died). I miss her so much and fear I will witness my other aunt's passing pretty soon. Maybe even another family member. Seeing as both my mom's sisters have/had it - I fear she or even myself may be diagnosed with it someday. I try not to think like that and just be present in the moment and be thankful for the time I do have. It's just scary... Thanks for listening. Any thoughts or comments feel free to pass them along. Posted on 10/24/09, 01:10 pm |
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