TO: Family and Friends
It has been 2 months since I’ve sent you an update on Phyl, so here it is….
It has been relatively quiet lately and we have settled into a pattern of living which I suspect will continue for some time. After the initial diagnosis and scrambling around trying to figure out what we can do to support Phyl, it is kind of nice to have some “boring” days! We wake up with the sun and Phyl gets me the newspaper and prepares our vitamins. I make her a cup of coffee and we discuss our day over breakfast. Some days there is something exciting like a shopping trip or doctors appointment, and Phyl has coffee or lunch with her friends 3-4 times a week. We prepare dinner together and settle down for some television before bed. Simple days…..
Phyl did start back at pottery last month and found it a bit difficult. She has less strength in her left hand and it makes centering the pots difficult. I don’t know where that will go but it will be a big loss if she can’t make pottery any longer. The bigger problem is with walking. She has little stamina and struggles on steps. Just today we got her a second foot brace which put a bit of spring in her step! But walking is surely a struggle.
Her Physical Therapist recommended that we move our bedroom to the main floor and we had a contractor who specializes in accessibility look at the house. He recommended a major renovation of the main floor bathroom to make it power wheelchair friendly. We’ve decided not to do that (yet) both because of the hefty price tag and the hope that an ALS drug will emerge in the next year that might make it unnecessary. We have decided to remodel my office on the main floor however to make it our bedroom, probably over the summer. This will allow her to avoid steps. The power wheelchair requires much more room than a manual model, which I suspect we’ll need sometime within the year. We may also look at a power scooter, both for around the house but also so she can walk the dog. She is missing getting outside to walk Riley!
As you know, she is taking an experimental drug called Amylyx. I know she was disappointed that the drug did not reverse the disease symptoms after being on it for 3 months (we are pretty sure she is not on the placebo). We are hopeful that it is slowing down the progress, but we have nothing to compare it with. The trial will be over in January, but the company has announced that they will continue to allow those in the trial to take the drug if we want. She was pleased and will surely continue as there are no major side-effects and it may be helping a bit. There are several other drugs being tested and we are hopeful one will make a difference someday. It is a bit of a race against the progress of the disease.
Phyl’s attitude goes up and down. When we focus on today, we are fine. Whenever she gets really tired, her legs and left hand don’t work well and it causes her to worry about the future. The initial confusion and anger have largely been replaced by a deep sadness. We could learn to live with her level of ability at present, but the disease is inexorable….. it just keeps progressing. Fortunately it is slow but we continue to watch for yet another loss in physical ability. Its a tough way to live. Her friends help by keeping her occupied.
In the near term, we are excited to be seeing the family around Christmas. We were in Rhode Island last weekend visiting Elena (and her parents) and tomorrow we head for Somerville to celebrate Noah’s birthday and Hanukkah with Colin (and parents). Phyl looks forward to these trips, but they are getting more and more draining on her. Nevertheless, we have plans to spend a month in Costa Rica in February. I hope the warm weather is good for her muscles. The bungalow is 50 steps from the beach, so we won’t be walking too much!
I’m on sabbatical leave until September so I can be supportive. I”m not sure what we will do when I go back to work. At present, she can drive and get around on her own. If she needs help, we’ll have to look into getting an aide to come in a few days a week while I’m on campus. Fortunately, we have a Long Term Health Care Insurance policy that should help pay for assistance when it is needed.
So that’s it for today. Phyl is out with friends this afternoon and I am about to log into a webinar on ALS. I’m becoming something of an expert.
Love to you all…