THE CLINIC

Spoiler Alert: I have the okay to buy green bananas.

Every 3-4 months I am scheduled to attend the ALS Clinic in the Neuromuscular Department at University of Michigan Hospital. What a wonderful concept and associated people. The concept is to bring all the doctors and specialists that may be involved in the treatment of ALS together in one place. This includes neurologists, respiratory specialists, dietitians, physical therapists, social workers, mechanical equipment specialists, speech therapists, and research (apologies to any mistakenly omitted). Clinic days are about 4-5 hours. One of the best aspects of the clinic is Ingrid and I are assigned an exam room, and all the doctors and specialists rotate to us. And even better, the doctors and specialists talk together about my case. And then I get a synopsis from each one and the whole team. Medicine and patient care as I always imagined it should be.

Now that we have been through several clinics, I’ve come to realize there is an associated rhythm of my emotions. Not wanting to be redundant but ALS is a progressive, fatal disease. There is never improvement or recovery. This reality is always lingering in my background. As my clinic appointment gets about two weeks away, I begin wondering if my condition is deteriorating? How much? Will the recommendation be to sign up with hospice? How will my world shrink?

So far, my appointments have established I am in slow decline. My ALS has primarily attacked my lower body. According to my neurologist, most ALS patients die within 2-3 years of diagnosis I’m going on 7 years since the disease was diagnosed. I am very grateful for the extra time. 

The above contribute to my anxiety prior to a clinic. What if? What if? And this with my increased emotions leads to my feeling pretty nervous.

Then the appointment happens. Always informative. This past appointment indicated my breathing and upper body strength is maintaining. The big news is the recommendation I get a feeding tube. While I don’t require the feeding tube at this time I ought to have the surgery while my breathing can support it safely. If we wait until I need it, my overall health may make it too risky. The objective is to have no regrets. 

So, as usual, I will be busy doing associated activities for the feeding tube and other tasks from the clinic. And with the diagnosis being my condition is steady state, carry on including buying green bananas!