Life and Love with ALS

Brian's sister was here for about a week, she left Tuesday morning. We spent a lot of time talking and eating and hanging out and it was a good thing. One afternoon, I did something a lot of people would think was weird or morbid. It startled my mom a lot.My poor mom. It's a lot for an old woman to absorb. I went to the Uptown theater and I sat alone and watched the movie/documentary about Steve Gleason. Steve Gleason was a 34 year old retired football player, a player who had scored big for New Orleans after the hurricane and was something of a sports legend when he was diagnosed with ALS. Thirty four, just over half Brian's age. His wife had a baby just about nine months after his diagnosis. He lives today, having chosen to go the distance with a tracheotomy, which only 5% of ALS patients do when the condition hits the muscles that control breathing. It is very different from the choices and wishes Brian has discussed with me. I respect Brian's choices, and I respec...

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 ...

A wonderful saying I heard years ago is that "Life is not a problem to be solved, it's an adventure to be lived". I think that is easy to lose track of when you come from a culture of striving. The good news is that culture encourages you to be your best self. The down side is that you can get so caught up in thoughts of what you should be, or could have done done better you forget about what it is you have done and do well. Brian and I, as a team have done and continue to do some things well. When I look back on these past nine years together, six years married I am glad we: Stuck it out in a often trying first year of marriage. Brian lost his job for 11 months and was involved in a court battle against the mayor himself for his team at City Hall and won. It is was a political and personal victory, big time but it was very difficult for us. I changed jobs in that year and for one of the rare times in my life had some significant health issues from not one but two a...

Friends, this one is a little dark and brooding. Not long ago, I posted about strength on Facebook. Being a "strong person" is not in my opinion so much an admirable mark of virtue, a credit to the individual as it is an innate thing, like eye or hair color. I am not sure parents instill it in a kid. I am not sure we as people really "develop" it, and in some ways I am not sure what it means.  If strength means not falling apart in the face of adversity, then I think the great majority of us have a lot of that. The reason is evolution - and natural selection. You had ancestors that not only survived the black plague, they did not end it all when no one they knew or cared about survived the black plague. You had ancestors, know it or not that lost multiple children to now curable diseases. In addition to that, they lived frequently with chronic pain and worked physically on a level most never see today. You are built to your core for survival. So, am...

Brian is part of a clinic study of ALS patients where he needs to get numerous MRI's. He is doing three this week, six hours total and answering tons of questions. The idea is finding "Bio Markers" of ALS so that it can be better understood and just to start out with maybe even more easily diagnosed. The more they understand concepts like Bio Markers, indicators of ALS in imaging, blood tests, etc the closer they get to an effective treatment. I am really glad he is doing this. They even want to contact me and ask me questions about how I feel he is doing. Yes- believe it or not that too is part of understanding ALS, learning what the family sees as well as the patient. Then there is the research Brian does not care to be a part of, and I do understand. Most medication studies are "double blind", you will not know if you are getting the drug or a placebo. Yes, I get the scientific value and so does he. You may have to stop taking a medication that is helping, ...