Nancy deVillers
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Compassionate Care. They lend you wheelchairs and other assistive devices. Their counselors are awesome!
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When I first had symptoms my doctor said ” Well you haven’t fallen so so it’s probably not MS or ALS”. So the next week I unexpectedly fell in the yard. I searched the internet for every possible disease or condition and ALS always fit the symptoms. When I was finally able to see a neurologist and they tested my legs and I was twitching all over the place the doctor was cagey “Well you have some of the symptoms but not all”. The second neurologist confirmed it was ALS. By that time I had prepared myself mentally. Being a crier the last thing I wanted to do was burst into tears in a doctor’s office. The internet helped me prepare for the worst. And I was able to say “this sucks but I finally have something in common with Stephen Hawking”.
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As to the question of how to let family and friends know about my diagnosis- I chose a different way. I do not want anyone to feel sorry or uncomfortable around me. Because of Covid I haven’t been able to see old work friends ( I’m retired) and relatives, On Halloween I posted on Facebook that I had some scary news. ” I’m not a man, never been remotely athletic, never in the military, and never lived on Guam”. So guess what creepy disease I have? I went on to tell jokes about not being able to walk anymore relating to my previous job running through airports and lifting heavy boxes of books. Most important to me was to let people know I’m still me and still have a sense of humor. They all know me as an avid reader. I told them I would not rest until I uncover the reason for me getting this disease and my new profession is Lab Rat. I have only told the neighbors I am friends with. I prefer to be the mysterious person with the ramp and wheelchair to the neighbors I have never liked. Should they inquire about my condition I will answer “What wheelchair?” I plan to remain my old snarky self as long as possible.