Wednesday, 5 December 2012

New Toys

The ALS Case Manager came by today. It was an interesting visit. First of all, her approach was very helpful and positive. She felt the apartment would be just fine for a long time and that there were only a few things I needed to make my life easier. We talked a lot about my personal support network and how Alberta Health Services could help.

On the other hand, there is some bad news. Apparently AHS will not pay for house-cleaning. So I still have to clean my own bathroom or hire someone to do it. :(

There were a couple of other interesting outcomes from the visit. We are ordering a transfer seat for my bathtub so if I get tired I can sit to take a shower. I don't have to right now but we are thinking ahead. In addition we are getting a rolling stool / stand for me to use in the kitchen. Right now I use a chair from my dining set. The rolling stand will act as a walker or brace whenever I need it, increasing my sense of safety and stability in the kitchen. Those of you who know how much I like to cook will understand how important this is to me.

And now the big news... I am being fitted for a personal, custom made wheelchair. I only need the chair for longer outings, such as going shopping or going on some sort of excursion. However it makes more sense to get one now for those times that I need it rather than waiting until I need one all the time before ordering it. As the Case Manager says, just because I have it doesn't mean I have to use it all the time, but having it means I can use it when I want to.

She was quite positive around my upper body strength and the longer term travel options. As she said, I can do most things from a wheel chair. Mobility is not as big a problem as breathing. Since my ALS has started in my legs, as long as it does not progress too rapidly or go after my breathing muscles, I can still do a lot for things for at least the next year or so, even when my legs fail completely.

There is a lot more happening, but that will be for another day.

1 comment:

  1. I am glad your worker was positive and that your apartment is adequate for some time to come. Even if you have to use a wheeel chair it means your quality of life would be pretty good . Many people live quite well in a chair. I will have trouble with it but my love is long and strong. I will be with you always.
    love,love,love Mom