Living with ALS sometimes feels like a full time job. And not the satisfying kind, more like the frustration with administration, bureaucracy and paperwork kind. I spend at least 50% of my awake time resting, and the other part working on accessibility issues. It took over a month to get a new wheelchair battery as mine was draining so quickly just going around the block, I was too scared to go out for fear of getting stuck. It took another month to get the receipt for my wheelchair battery so that I can submit to insurance. It was intimated that it took so long to get back to me as the company was not confident that I would pay for it (ah, because those of us with disabilities don't pay our bills, of course!). Gotta love discrimination. I called my insurance company who stated they would cover 100% of the cost of my new battery (whoo hoo!) "up to $300, the reasonable cost for a new wheelchair battery" (oh). After two quotes, the battery came to just under $800. Ugh. Nevermind, I was just so thrilled to be able to leave my apartment on my own again, in the sunshine! I did errands and rewarded myself with Starbucks. You know it has been a long winter when you pass another person in a wheelchair who yells to you "I finally got out!".
I have to admit, I sometimes feel like I am no longer a participant in society, more like an observer. It is very difficult to witness all the things that people do so easily, that you used to do without a thought, yet can no longer do. I am trying to find that balance of participating as much as I can, with my body's feeling of deterioration.
Thanks to the ALS Society of Canada, I have a new shower chair. It seems that when I stand, my left knee is taking all of the weight as the muscles in my leg are no longer strong enough. That paired with the fact that I try and shampoo my hair while holding onto a bar at the same time is very awkward. I've used it a few times and it feels much safer, but it is another thing to get used to; showering while sitting down.
I have good news, I have qualified for the Ontario Direct Funding Program. It is a program that allows me to hire my own attendant. I have been allotted 20 hours/week. You can imagine the government paperwork I am inundated with as along with being able to hire my own attendant, I am also responsible for everything that goes with it. I had to study the Employment Standards Act, payroll, WSIB, CRA deductions, etc, I won't bore you with the rest! It is a big process to set up but will be a big help to be able to hire someone I can trust to help me get up and showered and dressed for the day. There are times when I want to give up on the whole process altogether, I get so overwhelmed and don't want to have to need the help! I am aware that once it is established it will be a great thing and allow Travis to keep working and paying the bills! So I'm throwing it out there if you happen to hear of or know of someone who would make a great caregiver (PSW or otherwise), please let me know. Finding someone is what is giving me the most anxiety. I am looking for a female, but would also consider a 6 foot Brazilian male with a six-pack.
As always, what keeps me in the game is having things to look forward to. Coming up: Crazy girls weekend with Heather and Brittany, our annual chipmunk trip to Algonquin, Ottawa summer full of sun, the Ottawa Walk for ALS (June 10), visit with Keith, Tania, Kate & Malcolm at Summerland in August, and of course most importantly the Montreal Canadiens winning the Stanley Cup!
Carol Jean Skinner (née Sharman)