An update

I have become too much of a burden for my wife so for the last month we have been getting home health care twice a day through Fraser Health. They come every day for an hour in the morning and an hour at night, to get me up and put me to bed. We had to buy a lift to get me in and out of bed. The cost of this help is subsidized, but still expensive.

The home health care workers completely sponge bath me every other day and wash the front and back of my midriff morning and night. Ya. The first time it was embarrassing, but now, meh. I can have a normal conversation as a strange woman handles my junk and not be at all aroused. Boy, I never saw that coming.

They say they try and send the same health care worker, but I've had 20 different woman handle my junk last month. That is way more than all my previous years. Well, maybe not way more, but more.

There is one male health care worker I've had a couple of times. We are both straight so getting washed by him is...odd. I am sure we are chanting, under our breath "don't enjoy it,don't enjoy it,don't enjoy it ".

Anyway, I don't have Alzheimer, but I am meeting new people every day.

My condition continues to deteriorate.

I have been so weak that I cannot get in and out of bed, or go to the toilet, or clean myself without assistance from Irene.  But thats not the worst.

Lately not even Irene and I can get me in and out of bed, or on or off the toilet. I can more or less feed myself, but drop more than I eat and make a huge mess. In the heat I wilt and almost fall forward out of my wheelchair.

I can still hunt and peck type with one finger, but as the day wears on my hand and arm tire. My hand curls and I end up knuckle typing, which just doesn't work. My arm tires and I can only lift it for 2 or 3 letters then must rest it for a minute. It makes typing very hard. So how did I do this? Over 3 days.

Soon I will be like a cabbage in our society.

BUT; Never give up. Never surrender.

I've now been on copaxone for a year.

Still Alice

I just watched 'Still Alice', a sad but powerful movie, with some good ideas. I don't have Alzheimers, but I do have MS, another progressively debilitating disease.
So, I made a folder on my desktop called butterflynowings and in it put a video that goes like this;

Hello Roy. I am a younger version of you. Several months or several years may have past, but if you are viewing this your legs don't work, your arms don't work, you can't feed or clean yourself, and it is time.

This is very important, make sure you are by yourself. Go into the main floor bathroom and in the left hand drawer, way at the back is a vial with lots of pills. Draw a cup of water and take all the pills and then go lie down. It is very important to take all the pills and that you be alone.

Now go and do it.


 .....


Can't open the drawer?
Can't open the vial of pills?
Can't draw a cup of water?
Can't lie down on your own?


Ha Ha.

Well, 2015 has started out to not be a very good year. In less than four days I've already fallen twice. Not really fallen, but ended up on the floor, unable to get up.

The first was at night as I was getting into bed. I stayed up late, was tired, and just not careful enough. I transferred from my wheelchair to the edge of the bed but wasn't on it enough and slid off.

The second time I was in my office, in my office chair and was trying to get up and over to my wheelchair. To get up I pull myself forward and push up with my legs. My socks were too slippery, my legs too weak, and I ended up on the lip of my office chair and no way to get up or back into it properly; so I slid onto the floor.

Both times we had to get outside help to get me righted, but we did and I am ok.

It is January 1st, 2015. I have made it this far!