Decision

This week was largely spent driving (or being driven) back and forth to Boston to see two neurosurgeons on two consecutive days . The second surgeon told me that some of my symptoms may be related to degenerative disk disease, which I appear to have.  Clearly, the DDD doesn't explain all of the symptoms, such as the fatigue and the muscle fasciculations (spasms) that are now almost constant in my left leg, but it might be contributing to the weakness of my left leg, and  my fingers.

The neurosurgeon is recommending disk surgery, which I am considering. At first, I felt very negative about surgery, but I was coming from a "should" position. I was thinking in terms that I shouldn't have to have this complication along with the ALS diagnosis, but  that that sort of thinking isn't very productive and I have to move away from the "shoulds" and to accept what is. And "what is" is that if I don't get this surgery, my symptoms will worsen. If I get the surgery, they could worsen as well, but then I will never know if it might have helped. So if Peace Corps agrees to pay for the surgery I will most likely go for it. 

One positive is it could be done here in Maine. The surgeon said that he can refer me to a couple of neurosurgeons at Maine Medical Center, which would be preferable to going back to Boston. He suggested that it will probably involve a 3-day hospital stay and then some time in a skilled nursing facility or rehab hospital. 

Today, I will speak with my Peace Corps medical case manager, and make sure that my medical records from Maine Medical and Tufts are in order. And I will also take a break--all that going back and forth, even when I am not driving and am getting pushed around in a wheelchair is exhausting!  

Mobility, Falls, and Such

ALS looks different on everyone. For example, for some people, ALS begins in the head region and affects speech from the beginning: this is known as Bulbar ALS. I seem to have the Limbic type of ALS, which begins in the legs and feet..Normally I feel grateful for that, except for when I fall, which I managed to do 15 minutes ago when I was standing up and untangling a power cord. Suddenly my left leg gave out, as it does sometimes, and I crashed to the floor. Thankfully I was on a rug that broke the fall a little, and a wood floor is definitely softer than a concrete one, so no severe harm was done beyond the sick feeling I always get after a fall.  Sometimes a fall can wipe me out for a day or more; they are  horrible, and I now understand why they are such a big deal for older people; they do real damage.

I am transitioning from a walker to a wheelchair. I am still using the walker in the house, but I don't anticipate that to last very long. It is becoming more difficult and my left leg is getting weaker by the day. It tends to buckle underneath me, and that is what happened a few minutes ago. Outside, I am using a wheelchair almost exclusively; the ground and even the sidewalks are too uneven for me to handle.

The main problem with using a wheelchair in the house will be getting into the bathroom. The door is too narrow, and even if we were to  widen it, the toilet is in a very awkward spot. For as long as I can take a step or two, I may have to wheel the chair up to the door, and then try to navigate the bathroom with a walker. I have no idea how this will work once I can no longer walk. I try to stay in the moment and not get too far ahead of myself, but this stuff does require some planning, and I am not seeing a ready solution to this bathroom problem.

Adaptive equipment is quite expensive, especially since I have had to buy and discard several items over the last few months. It will soon be time to make a trip to the Lions Club's assisted device closet to leave them for others in need. Thankfully, I have been given some hand-me-downs from friends, which has helped to mitigate the costs.

Tomorrow I go back to Boston to see a neurosurgeon. The ALS specialist found some changes in my lower spine that may or may not be related to my symptoms and they want to check it out. I'll be going with my Boston team: my brother and driver, Charlie Hague, and my dear lifelong friend, Vicki Verrill Smart, both of them angels.