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Andrea Krzysko
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Andrea Krzysko
MemberOctober 6, 2022 at 3:47 pm in reply to: Do you consider yourself a “hero” for living with ALS? How about a “survivor?”I consider myself a fighter. I have good days when I rejoice and bad days when I dig in my heels. I strive to tip the balance in favor of good days by planning ahead for what may happen and adjusting my attitude about what is important. I have professional and personal helpers who support me in ways that I never even knew existed. Mostly, I try to see each day positively and laugh a loud and happy laugh. It means that I have won the battle.
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I have PLS and have been in a wheelchair for the past 5 years. When it came time to move to a motorized chair 2 years ago I elected to pay out-of-pocket for a power seat elevation system since Medicare did not pay for this feature. It has been a game changer for me in social situations since I can now talk face to face with others. It provides independence in day to day activities from obtaining objects from hard to reach areas to lifting me up just a bit as I transfer from one surface to another.
You may say that your resources are already spread thin and this is a luxury that you cannot afford. I get it … however, there is an effort afoot to convince Medicare that power seat elevation should be covered. You are an essential advocate for this effort. All you need to do is submit a comment about your support for coverage to Medicare by Sept 15th. You can find information and links for submission of comments at the Rise for Access website https://www.rise4access.org
It may take a while for this to change, but I believe that administrators can be convinced when they hear our stories.