Trip #5

We recently returned from our most recent trip to Dallas for my 8-week clinic visit as part of my participation in the Healy ALS Platform Trial. Once again I was put through a number of physical tests to measure my muscle strength in my legs, arms, hands, and fingers.

The appointment also included measurements of my lung capacity, a dozen blood tests, and a second round of meningitis vaccination shots.

I also received a new gadget — a Spirobank Smart spirometer — that allows my doctors to monitor my lung function remotely through a mobile app on my phone.

And of course, we received a new (and even BIGGER) batch of daily shots to bring home this time since our next clinic visit won’t be for eight weeks.

While my lung capacity continues to be very strong, I continue to experience increased weakness in my arms and legs. Specifically my left arm and hand have become so weak I can barely use them for day-to-day activities. I rely mostly on my right arm and hand, but every day they become weaker, too. I rely on Jennifer more and more every day to help me with day-to-day activities like getting dressed and undressed, cutting food, and helping me in and out of the shower.

While my legs are still working, I’m now 100% dependent on a walker to get around. As noted in a previous blog we are already in the process of having a customized motor wheelchair prepared for my future use.

During this trip we took advantage of a wonderful gift from our friend Jan who gifted Jennifer and I a one-year membership to the Dallas Museum of Art (DMA). With the use of a wheelchair I was able to enjoy a terrific Van Gogh exhibition on his olive grove series. I love museums and this was such a wonderful treat for Jennifer and I. We hope to be back at the DMA on future trips.

Another wonderful part of this trip included visiting with Jennifer’s nieces and nephews at her brother’s house where we stay during our visits in Dallas. John and his wife Anna have been terrific hosts for us during our stays with them—a reminder of how important it is to have family around you during these challenging times.