I have been using a manual wheelchair since 2011 and I have difficulty talking about this.
Friedreich’s Ataxia is a genetic disorder that progresses with time. The terminal condition impacts everyone with it differently. The disease reduces daily living activities the individual can do; it also shortens life expectancy as most die due to heart complications. Roughly 1/50,000~ of people over the world have this rare disease.
There is FARA- the Friedreich’s Ataxia Research Alliance that is dedicated to cure this devastating disease. Slow – Stop – or Reverse of loss damaged nerves throughout the body. More information about it is here.
I have been reluctant to ask for help. Basically I flat out do everything by myself. I think this keeps me independent. If you can’t donate anything no sweat. I am blessed to understand that I have a loving family, not homeless, still have a job, and I have a large number of people in my community that care about my well being. I am getting my own apartment in spring 2016 and plan on making it accessible. Grab bars at every wall so I can walk/crawl throughout the 750 foot apartment. The shower is a roll-in shower where grab bars will be too.
Right now I have ability to put my pants on in the morning by standing up (barely). I have to have my calfs lean against my bed frame and ‘prepare’ to balance freely for a few seconds while I pull my pants up to my waist. Once accomplished I fall freely back into my bed.
Your probably thinking, “Why not just lay on your bed and scoot your pants up? I mean it is easier.” Truth is it is, but I have this constant worry in the back of my mind.
1. I don’t want to lose my ability to lose what I have lost within 7 years.
2. Bone density in my legs I am sure have gone down in the 4 years I have used the Wheelchair.
3. Luckily I am not in any physical pain and I want to keep it that way.
More standing/crawling will be harder, but I am the type of person where I have to keep pushing myself for the better.
That is the reason for getting my own place. For a few years I have not been in this positive mindset.