Thursday, 11 June 2015

Longer Life And Beer Reduction

It was a very interesting day at the ALS Clinic yesterday. For the first time since I was diagnosed, my neurologist, or rather one of the two that I work with these days, said that the three year timeline for my prognosis was probably wrong. He went on to say that this is why he hates to give that specific kind of prognosis, because there are people like me who do better than others. He went on to say that he was "pleased with my slow progression" and that he had "no problem signing off on my driver's licence for another year."

ALS is still a progressive disease; my disease is still progressing. But this is the first time I have felt like I might make it a bit longer than planned, perhaps even an extra year. This is the first time since diagnosis that the 36 month timeline has been firmly dismissed by a neurologist. In a life expectancy where you typically deal in months, another year of prognosis is a wonderful thing.

Even with that good news, there is still measurable progression. It hasn't stopped; it's just unusually slow for someone in my age group. For example my arms are now measured at a "4" on the clinical scale instead of a "5", the normal level. My fingers are noticeably weaker, probably a "4" as well, while the loss in my shoulders is minor. I am not as strong as I once was, but I am still strong nonetheless.

There were other specialists there, as well as the neurologist, including the nutritionist. Her role on the team is to ensure I maintain my weight, meet my nutritional needs and keep my fluid intake up. Unfortunately all three of those are coming into conflict these days. My weight is up; I now weigh 250 lbs., the heaviest I have been in my whole life. While this is not a real concern right now, the last 15 or 20 pounds are affecting my ability to transfer, especially with my arms getting weaker.

When I asked if I should go on a diet, the answer was an equivocational "no". She doesn't want me to diet "per se". She would like me to maintain a high protein intake, a lower carbohydrate intake, and to make sure I eat plenty of fruits and vegetables. Katherine was quick to take up that cause. Then came the killer. I am supposed to reduce my "non-nutritional calorie intake." That means beer; beer has lots of non-nutritional calories in it. Up until around 240 lbs., the weight was good for me. It still is kind of good for me, but I have hit the top of the return curve. More weight is not so good from here on in. I have to drink more water instead of beer. Here is where I make a sad face.

The nutritional stuff isn't such a bad thing. Beer is expensive, especially in a bar. Now I don't spend all that much, thanks to very supportive friends, but reducing my beer intake will reduce my expenditures, something I need to do these days. I'm going to try it for a couple of weeks. If I am unhappy, then screw it. I will get fatter.

1 comment:

  1. Great news! Sounds like a fair trade-off: the beer for an extra year! Cognratulations. (And you never know...maybe they'll find the cure in that year.)