Fern Cohen
Forum Replies Created
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Marianne I find sticking to soft or pureed food helps, as do smoothies. You will figure out what works for you
Fern
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Oh I could write a book on the subject!! Even neighbors who knew me when I was an educator, treat me like I suddenly have no brain. Even when I use a speaking device or an app on my Iphone they speak to my aide and refer to me in the third person like “How is she doing?” and here’s the best “Tell her I will be coming to check her heat today” and the aide turns to me and says “the super is coming to check your heat today” and I type out I am not deaf. I heard hi, and the aide says “okay. you don’t have to have an attitude”. I have an attitude because everybody is so damn ignorant. When I tell the aide “next time, tell people to talk to me directly” she will say something like “people feel uncomfortable”
And my family is even worse. I am single with no children and I used to see my sister and her 3 kids all the time and they haven’t invited me for family celebrations even a few years before Covid . My sister tells people it’s “just too hard”
As I said, I could write a book and I am in the process of doing just that but have trouble with deciding on tone. I have had a book in my head since I was diagnosed in January, 2004 — 17.5 years ago.
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Why would you NOT?? I lost my voice quickly and found out about voice banking when it waa too late for me. If I knew about voice banking when I still had a voice, I would have JUMPED at the chance.
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I get the flu shot every year, way before I got ALS. Sometimes I get a flu strain anyway, often not. CVS close to my home has been out of the vaccine for 55+ but as soon as they get it, I will be in there. I think it’s important for anyone with a chronic disease, and certainly anyone with respiratory issues, to get the vaccine.