Clinic - Progress Report

We went to the ALS clinic on Thursday. Brian has good lung capacity with no significant decline. It was 96% last visit, now six weeks later at 95%. There is little to no progression of the weakness in muscles at this time. Brian does complain of tiring more easily, but other than that pretty much where he was six weeks ago. The Doctor states that his progression thus far is slow/average and that he thinks Brian will be on his feet for a "long" time (that is long in ALS time, which mean may just maybe one year plus of walking). We went over some safety things, like getting a bath chair for those time he has done a little too much and might feel wobbly in the shower. So that's good. He is also going to modify his exercise routine and get more into something called adaptive yoga. Cool. It was all good news, good for ALS.


It was also for both of us a tough 3 hours. W did spend that long talking to nurses and PT and OT and folks from the ALS and MDA Societies. Dr. Walk and I shared this mini moment when he asked how we were doing on a mental/emotional level and we both agreed okay, as well as we can be doing, but it's sort of like getting hit by a truck... He said so very quietly "I know it is, I know...". I think he does know from not just the Doctor perspective, and I wonder what personal experience got him into the ALS specialty. I could so feel him - and all the people we spoke with wanting to help and help and do something and having this frustration that it cannot be fixed. It has to suck for them sometimes too. The ALS specialists know oncologists who are saving lives that had not one chance of survival past a few months twenty years ago. Yet here ALS sits, with very little more help than was available for Lou Gerhig in 1939. For Doctors and nurses and everyone who just wants to fix it all and to help, that has to be frustrating.


Without dwelling on it much, I can say that Thursday clinic (and was happy to leave) thinking about how 9 months ago Brian was building decks and now we speak of bath chairs.


We are going on our big houseboat trip next week. It will do us both good. We need a change. I AM grateful for the positive news we received this week, grateful for the lack of rapid progression, grateful for more time with Brian.  Just grateful.