Forbes Norris ALS Clinic Visit - A Progressing Disease

Monday of this week was a good day. Ben and I travelled to the Forbes-Norris ALS Clinic for my periodic check-up. The clinic is named after Forbes (Ted) Norris, M.D., a renowned neurologist who dedicated his life to helping people with ALS.

ALS Clinic Visit

Often, people living with ALS (PALS) are asked to go in quarterly. We had last been there six months ago. The purpose of these appointments is to meet with a multi-disciplinary team that includes a neurologist, physical, occupational, and respiratory therapists and other health care professionals. They, together, provide PALS with a support team to make their lives as comfortable as possible. They are terrific, dedicated, compassionate folks. After just two visits, they are beginning to feel like friends.

The session started with vital signs taken and a catch-up on history relating to meds and supplements being taken and to general well-being. Next, Bob Osborne, RN administers the ALS Functional Rating Scale (ALSFRS) questionnairethat provides a score assessing disability in PALS. It consists of clinical observations and asking questions of the individual on topics such as handling eating utensils, ability to turn over in bed and other daily need issues. While going up stairs is a bit tougher (handrails are my new best friends in this) and I have to stop more often during walks to let my legs recharge. Clearly, I am slowing down.

Jonathan Katz, M.D.

Next was the examination by and discussion of current situation with Dr. Jonathan Katz, M.D. who is the Director of the ALS Clinic and heads up neuromuscular research. Great guy. When I first got to the clinic, I saw him in the hallway and was greeted by a jovial “You look great! See you next time!” Wanting my money’s worth, however, Dr. Katz, Ben and I ended up in an hour-long conversation in the examination room. His take was that, all things considered, I did, in fact, look great and was doing well.

Following was a test of my lung capacity and breathing strength. Both of these had been conducted six months prior and we were eager to see if things had changed. My February test had been very strong. This time, my lung capacity was diminished. These tests had me a bit concerned going in, as I find myself breathing hard when walking. That is likely because I am so out of shape! The results, however, were less bad than I expected.

I also met with the physical therapist who reminded me to keep doing my daily stretching and strength exercises, but suggested I get an ankle-foot orthosis (brace) for my right leg to match the one I use on my left when walking longer distances with my trusty trekking poles. I can deal with that!

Trekking in Seattle

So, at the end of the three hours, we left knowing the disease continues to progress, but full of hope and looking to get Beyond ALS.