Andrea Krzysko
Forum Replies Created
-
I was 64 (2017)when I was diagnosed with PLS (primary lateral sclerosis) a subset that is more rare than ALS but has a lifespan of about 20 years. It affects only upper motor neurons. Looking back I had symptoms in 2013, but I thought my leg weakness was because of knee problems and knee replacements in 2014. In 2016 fell and broke ankle. First saw neurologist in 2017 and Mayo Clinic officially confirmed diagnosis.
My diagnosis changed to ALS in Spring 2024 at age 71 when I started to have respiratory problems requiring more support with bipap machine and cough assist machine
Do not think age had anything to do with diagnosis.
-
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.
-
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.