Clinic Recap 9/2

Clinic days can be (usually are) long and draining. It’s kind of like taking your car to the shop when you know somethings wrong with it; you’re just not sure how bad it’s going to be. That being said, this clinic visit went almost as well as it could. We arrived with breakfast in hand. Accompanied by my sister Summer, and my dear friend Allie, I met with occupational, physical, speech, and respiratory therapy, neurology, and social work. I go through a few different tests throughout the day; a pulmonary function test to measure lung capacity and cough response, a motor function exam to measure changes in motor function, and a grip strength test to track decline in the musculature of my hands.

All in all, the results were good? Question mark because it feels odd to describe levels of decline as good. My respiratory levels are unchanged which is significant because respiratory decline is an indicator of progression. Not so great though, is that i’m “evening out”. My left side of my body, once not as weakened as the right side, is now catching up. Grip strength is about 25% of what it was before ALS in both hands.

The most exciting prospect from clinic is that I have a chance at being enrolled in what’s called an Expanded Access Program (EAP) for a new drug called MN-166 or Ibudilast. This drug is in phase 3 trials and is not widely available yet. While research is ongoing, preliminary results are good. If you’re like me, you’ve never been waiting around to hear if you will receive life-extending medication. I’m waiting, and hoping while trying to live this life one day at a time. They should know by the end of the month. Cue Aretha Franklin.

Grayson