Blogs » Fox Family Forum » A look down the road: reflections from ALS clinic


Happy New Years.

It’s 2011 and it’s the third year of being diagnosed.

Just got back from clinic Friday and it’s busy ever since. Again, lost too much weight in the three-month period. So, now I’m, three times a day, eating and drinking a protein shake that has high calories in it. It’s the first time in my life that I’m losing too much weight, and doctors wanting me either to gain weight or sustain weight. Ha ha, go figure. Also looking into a hospital bed. Of course, I want the biggest and the best so I’m looking in at least a queen size. I can’t stand being strapped in and confined, and the hospital bed has an air mattress on top of it to keep bedsores from occurring. Remember, you gotta look down the road when you get things, because you’re only going to be able to get it once.

I’m looking to get a Dynavox, which is an infrared assistive device on speaking, that looks at your eye and you blink and select it like a mouse. I’ll be able to go on the Internet, I’ll be able to change my TV, answer my phone amongst other things it’ll do for me. It takes two months to get it, but me and Pastor Bill are going to do a-week-at-a-time demo. It’s a free demo. They’ll be at your house and set it up and everything. It’s kind of like the one Pastor Bill already has except it’s upgraded. Medicare will pay 80 percent and there’s an organization, they usually pick up the 20 percent for ALS patients so actually it’s free of charge.

Oh, a funny story at clinic. As we were sitting there talking to the physical therapist about getting a belt to help getting me in and out of chairs, my uncle that when with us reached in his pocked and pulled out the key to my car. And he pulled it out in pieces. It completely disassembled itself in his pocket. And as we were trying to keep a straight face and listen to the physical therapist (he was trying to put it back together) we finally just lost it. He didn’t realize that we were watching him until later, and he looked at us and said, “What?” Lucky enough, we took a spare key with us so we could drive home.

Remember every time you go to clinic it’s an adventure.

That chair that the physical therapist was in became unlucky because anybody that sat in that chair dropped stuff on the floor. The physical therapist dropped everything out of her coat pockets, the occupational therapist dropped all of her paperwork on her clipboard including her necklace broke amongst her sitting there visiting with me.

So, the smart thing to do was to take that chair and put it in a corner so nobody could use it.

At clinic they had a record 40 patients singed up to come and 32 showed up. I was number 14 - signed in that morning at 7:30.

I knew it going ahead of time, that my right leg is weaker than my left, but not weak enough not to be able to walk. It’s just a matter of not being able to get out of chairs that it’s being affected. Once I’m standing up I can walk and still maneuver around.

Also got medicine to break up mucus so I’ll be able to cough the mucus up so I can dispose of that properly.

Oh, and I have been sitting in my power chair more. I’m getting used to the custom fit and the controls and driving around in the room.

Pastor Bill said he’ll definitely pick up my chair and me, for the walk on Mar. 6 so keep your dogs and young children away ’cause there’s no guarantee.

  • Craig Fox