The day before we left for my dreaded appointment we went to dinner with friends. My friend Catherine told me about the founder of her company who had ALS and couldn’t speak but still participated in Board meetings and still skied. I said, “I wonder why it didn’t spread. Was it really ALS?” The only ALS I was familiar with progressed rather quickly from limb to limb.
San Francisco is a 3.5 hour drive from Reno where I live. My husband and I drove down the night before and stayed at a very nice B&B on Church Street. We walked to dinner down the street and came across a really awesome mural.
These photos are a tiny part of the huge mural. It was one of those special finds that come to you when you walk around a large city. Having grown up in the Chicago area I loved the urban theme of the mural.
My appointment the next day started with an EMG. I put on a gown and then waited on an exam table next to a floor to ceiling window. We were on a high floor. I was looking out over buildings with men working on top, a busy parking lot down below, the main hospital across the street where our son was hospitalized when he was one for failure to thrive, and the fog rolling by – at times letting me see several blocks away and at other times closing in the view. I remember thinking if the fog lifts it would be a good sign. The view reminded me of the mural we saw the night before only not as surreal (although waiting for an EMG at an ALS Clinic did have some surreal qualities).
My husband was able to stay with me while I waited and during the EMG, which was a huge comfort. I was able to feel most of the sensations during the EMG and I thought that was a good sign. When the doctor finished he said, “there is nothing bad in these results.” Stan and I were thrilled to hear that and we were quietly celebrating by holding hands tightly.
I was told to dress and then the doctor who runs the ALS center would see me. We waited in her office for quite a while during which time we came to realize that we may have been prematurely celebrating. The doctor came in and tested my reflexes and had me walk with toes up and on tip toes. She had me spread my fingers while she pushed against me. It seemed that I was doing everything fine. She tested my reflex in my chin (who knew there was a reflex there?) Then she said, “I’ll be right back. I am going to get a pamphlet.” We thought uh oh. Why would we need a pamphlet if I was fine?
She came back and explained that I have ALS in the Bulbar region – the tongue and throat. I immediately started crying. She confirmed that there was no evidence of any nerve loss in my arms or legs. She told us about the newly discovered ALS gene that causes ALS and dementia. My mother’s father and brother both had dementia. She recommended that I do genetic testing because the people researching that gene would be very interested in me.
They let us go get lunch and come back afterward for meetings with a dietitian, speech therapists, respiratory therapist, and social worker. The dietician explained that I will need a feeding tube. We just got a new hottub so I asked if I would be able to swim. He said he had a patient with one who surfed, everyday. He also told me that heavier people do better with this type of ALS because it is hard to keep calories on because you can stay so active, so I should try to gain or at least maintain my weight. The speech therapists measured my speaking and gave me a dementia test. I got all the answers right I think. The social worker talked with us about the realities of life with ALS and how we should tell our son, and said that he would likely be an adult before I die. The respiratory therapist measured my breathing and ordered a bipap machine for me as well as suction and cough assist which I will need sometime in the future.
We left the hospital after 5 pm. That fog never did lift. We drove to Half Moon Bay, thankfully only 45 minutes away. We had a lot of information to digest.
I wanted a nice Diagnosis Day photo.
We went to dinner with an ocean view and watched pelicans fishing with seagulls swarming, seals, and dolphins.
After dinner we went for a walk. My husband Stan has a chronic disease and he reminded me that we went for a walk the night of his diagnosis at Mayo Clinic ❤❤❤.
We slept with the door to our balcony open so we could hear the waves. Neither of us got much sleep.