Thursday, 10 July 2014

I Am The One Who Knows How I Am Doing

I went to the ALS clinic yesterday, an event that has become so routine that it has become a non-event. It's a long drive to the southern edge of Calgary, to a terrific new hospital intended to serve the burgeoning communities springing up like dandelions on the suburban lawns in front of the many new houses therein. The clinic is well organized, with patient names on the doors and professionals moving about from room to room. It's all very clinical, but then again, it is, after all, a clinic.

I went to the ALS clinic yesterday, there to get measured, questioned, weighed, assessed. Of course the tools available to the neurological team are so crude and simple that they make the whole process more anecdotal than objective, an exercise in asking me what is happening to my body rather than using technology to tell them the story. Even the FRS is based on my responses to questions. It is too coarse a measure to judge the subtle changes going on in me these days. It is understandable; this disease is so poorly understood that patient experiences are the best way to learn about what is happening.

The weakness in my arms is a good example of the crudity of the measurement process. The neurologist asks me to lift my arms into various positions and then simply pulls on them. If I can resist, I am healthy. The less I can resist, the greater the weakness in my arms. There is no tool for precise measurement; it's probably not that important anyway. The outcome was that I am weaker in my left arm, with early signs of weakness in my right. My hands are showing early signs too. I knew this already.

My weight is perhaps the easiest thing to accurately measure. They wheel me onto a wheelchair scale, then subtract the weight of my wheelchair. Yesterday I weighed 244 pounds, not including the wheelchair. Yes, I am that heavy; most of that weight is firmly pegged around my mid-drift. I am about 60 pounds over my "healthy" weight; then again, I am no longer healthy. Given that my arms and legs are getting thinner, my belly is clearly getting fatter. I will need new pants soon at this rate. They tell me that being heavy is good; I must be doing really good.

Then there is the whole blood clot problem. After discussions with the pulmonary specialist, it was decided by all concerned that I should get another ultrasound, to see if the DVT in my left femoral vein was still there or if the rat poison had done its job. If it is gone, I will still have to take the rat poison to make sure it doesn't come back. There is talk of a different medicine, however that will have to wait until after the ultrasound today, plus a couple of additional weeks to adjust my INR levels; they were a bit high last time I had them tested. Perhaps that explains all the bruises in Europe.

All in all, it was a routine visit, a non-event. I have ALS. It is progressing slowly right now. My arms and hands are beginning to weaken. My FRS is unchanged; I am still functional, for now. One day that will change. I will know long before the doctors know. It's my body; they will just ask me how I am feeling and I will tell them.


  1. All so true. Clinic feels very futile and pointless to me most of the time, and they never really manage to tell me something I didn't already know. Yet I continue to go...

  2. Did I tell you Rick that Gail in AZ has been diagnosed with Parkinson's.