Hi all –
Yesterday was Mike’s quarterly clinic appointment and I’m very happy to report we had another fairly uneventful visit. Both David and Matt attended this clinic visit and it helped to expose them to all of the medical professions seeing him and gave them a chance to ask their own questions.
Mike is definitely holding his own and showed very little change since the last visit. As Mike reminded us yesterday, this is a slow progressing disease so if you look day to day, month to month or quarter to quarter things seem to stay the same but if you look from 2015 when his symptoms started to today there have been major changes.
A little over a month ago he had quit taking his supplements (food thru his feeding tube) and had lost weight over a 6 week period, which had me worried for a bit. Losing weight is a bad thing for people with ALS, they lose muscle that they can’t get back and we also just found out yesterday that increased longevity in ALS patients is tied to maintaining a higher BMI %. And while he had taken a short break from his supplements, I’m happy to report that with a decent amount of my nagging he is back on them full time and has put some of the weight back on. He is also still eating a little bit for pleasure. The speech pathologist that tests his swallow suggested he do a barium swallow x-ray test. At clinic she is able to see and test how food moves from the lips to the back of the mouth but she can’t see how it progresses through the throat and esophagus without the x-ray. This test will give us a benchmark and also show the level of aspiration risk involved with Mike’s eating for pleasure. The test is tentatively scheduled for July 12th.
His speech is to the point now where they are no longer testing him for rate of speed or intelligibility. I can still understand him most of the time, but it is getting more challenging and especially for those who aren’t with him all the time. He has tried to use an app on his phone to speak for him but the app has been full of bugs and unreliable which just left him frustrated. We are now looking into a device that is JUST for speaking and therefore is more reliable. He will get to do some hands on testing of a couple of these devices on July 12th, and will hopefully have one soon after that.
He is starting to notice loss of strength in his shoulders. It is getting more challenging to lift things over his head but otherwise very little physical change. The shoulders are also the only area the doctors really saw any change.
His respiratory numbers were about the same or slightly higher than his last visit 3 months ago, and really those are the most critical. The speech and the strength changes impact his daily routines but the respiratory issues are the ones that are ultimately life threatening. When we were first sent to see an ALS doctor we did all the “online” research and everything said that the average life span is 3-5 years. Research also showed that those who’s symptoms start in the bulbar region like Mike’s did are generally on the shorter end of the spectrum. All indications show that Mike is NOT interested in being average, we passed the 3 year mark from initial symptoms in March and things are still progressing very slowly. We are extremely grateful that with the slow progression we are still be able to enjoy all of the same things we’ve always loved doing and appreciate each and every day!
His Radicava infusions are going well. Mike and I are able to administer them at home on our own without needing a nurse’s help. This keeps the treatments flexible with our schedule and prevents any real interruption to our days. While we will never truly know if it is helping or not, it feels good to know that we are throwing everything we’ve got at the disease.
We are enjoying the new pool and love getting to see so many of you on a more regular basis, so keep coming over whenever you have free time to enjoy some fun in the sun!! We are also getting super excited about the annual 4th of July party and can’t wait see everyone.
Love to all!!