The ALS Association

I Knew Little about ALS

Gregory W. Council, Idaho

My Mom died from ALS on March 28th, 2009. These are my last memories: We talked regularly. In 2006 she asked me if I noticed any difference in her speech, which I had. She mentioned having issues with her motor skills. I thought of my brother Mark who has cerebral palsy and severe mental retardation. She talked similar to his speech. Subsequently, she told me she was diagnosed with ALS. I knew little about it. She educated herself about the disease and also educated me. She asked me to travel to Montana to build a deck for her so she could view the sunsets from her home, which I did. She wanted an extra wide stair opening to facilitate a future wheelchair ramp as she knew eventually she'd need it, obviously optimistic that she'd live that long. She showed me her 'talking device' that she was learning how to use, seemed really upbeat about it but never got to use it, and shared her knowledge regarding the disease when we stayed up at night and conversed one on one like we did so many times over the years about whatever topic. She told me she had a facebook friend she met through the ALS support group who had lived 10 years after diagnosis and responded to her messages with a device he held in his mouth, reduced to a respirator and wheelchair. She implied as a worst case scenario that her life may be reduced to that but never revealed the fatal nature of the illness. She showed me her feeding tube, all the while never revealing any fear of her own death. We went out to dinner. She tried to eat normally. I witnessed her gag and choke in public as we shared our last dinner together. Very saddening. I wanted to take a picture with her at the end of my last visit but she adamantly refused saying she didn't want anyone else to see her in her present condition. She weighed 70 something pounds at the time and her speech was slow and labored, most times choking as she spoke. When I hugged her she was so frail. I am genetically pre-disposed to this disease. ALSA research has revealed a 10-20% genetic pre-disposition, most commonly in men over 50 years of age, direct descendants, but no absolute correlation. Mom told me genetic pre-disposition was rare which seems accurate; however, my opinion is due to lack of funding for research, the ALSA hasn't had funding to conduct thorough research on genetic pre-disposition; (too focused on funding for researching medication to prolong quality of life, which is great). I've witnessed first hand the debilitating nature of this disease. Now as the concern for ALS has gone viral via social media, (which would have made my mother delighted), my hope is the recent amount of awareness and subsequent funding will aide in the on-going research and eventual cure for this troubling disease.

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