Saturday, 5 July 2014

No More Lifting

I have a form of ALS called Progressive Muscular Atrophy, or PMA. This variant of ALS is extremely rare although the outcome is exactly the same as it is for all other ALS patients, complete lost of voluntary muscle control and ultimately death. PMA just works a bit differently. Essentially it starts in one extremity, most often the legs, and slowly works its way to the other extremities.

In my case, PMA is working its way "up" my body, slowly and steadily, rather like the reverse of stepping into quicksand; instead of me going down, the disease is working its way up. It started in my legs, most probably in my feet but I didn't notice. The earliest signs with the tripping and falling, most likely from toe drop. These falls were intermittent enough that I ascribed them to a bad knee. Then came the fall with the outboard motor and I ascribed the weakening of my legs to a back injury. Ultimately I found out what was really going on.

ALS has taken my legs. It is now working on my mid-section, stealing muscle capability from my diaphragm and arms. This is becoming ever more obvious to me, although not necessarily to others, in the small things I can no longer do, and in the increasing clumsiness in my hands, the constant dropping of things finding the finger equivalent of toe drop. Of late there have been a couple of very noticeable changes, personal enough that I am really the only person to notice them.

Of course there is the fact that I can no longer get vertical; my legs have given up completely. I can no longer lock my knees to bear the weight of my body. They just collapse. There is the not-so-obvious loss of strength in my arms. I can no longer do a "straight lift" up in my chair as high as I could in the past. That inability to lift myself came clearly when I wanted to lift myself up the stairs, one stair at a time, when the elevator went out the other day. I could not get the elevation needed with my arms alone. I couldn't do it.

I also notice that the transfer from my chair to my bed is becoming increasingly difficult. It's to the point where the whole operation is rather hit and miss. Sometimes I make it; sometimes I rest half-way on the wheel of my wheelchair. I am getting a lift put in soon, something that will make it easier to get from my wheelchair into bed along with the reverse process. I will need it. My arms are getting tired.

ALS with PMA, that is what I have. And it is Progressing.

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