After the beach

TO: Friends and Family

FROM: John

I have not sent an update on Phyl for a while as we have been enjoying ourselves on the beach in Rhode Island. We rented a small cottage right on the sand dunes and within eyesight of Pt. Judith Lighthouse. The yard was fenced so we could bring our dog Riley. We spent quiet days reading on the beach, blustery days huddled on the deck, and fun-filled days in the sand with family and friends who visited. And lots of seafood of course. It was for the full month of June and both of us relaxed and enjoyed not thinking too much about “real life.”

Coming home was more difficult. Phyl has been putting off thinking about the progress her disease is making and it hit her yesterday. We had one of our regular visits to UMass Medical as part of the study trial she is in on Monday. Lots of muscle measurements and talking about ALS. We also had a phone call to a Home Health Care Agency in the morning discussing getting her a few hours of help from an aide each day. And we talked about how to make our home more wheelchair accessible. On Monday night she acknowledged that the disease is making her days really difficult as she can’t do so many things that she wants to do. The disease progress is slow but continues to take away her physical abilities. And yesterday it hit her. Fortunately, she had a visit from several friends who let her talk and cry while I went to work for a while. She acknowledged that no matter how hard she tries, she can’t stop the disease. I think the hope she got from the ALS Walk-a-Thon and all of the new research allowed her to imagine that a cure was within sight. Yesterday she realized that it was not likely going to be in time for us.

I am sorry to have to share this with you, but she wanted me to make sure you know the truth. The pictures of us on Facebook enjoying our kids and grandkids are all real. It is amazing how much joy can be mixed in with so much sadness at the same time. So our plan is to continue to do whatever it takes to allow her to do what she can and be as comfortable as possible for as long as possible. And while we are not planning on a miracle cure, we are certainly open to being surprised. Planning for a cure however is too draining and when the hope disappears, it is crushing.

The good news is that the experimental drug she is on seems to be slowing down the disease progress. The good folks at UMass Medical have a record of her muscle strength over the past 9 months. While her legs, feet, arm muscle strength is going down, it is going down slowly. She was off the drug for 7 weeks while we were in Costa Rica (while they reformulated the flavor) and her decline was measurably worse than while on the drug. We are grateful for this. She is also convinced that the support she gets from friends and family, her diet, exercise, acupuncture, vitamins etc. all have contributed to her relatively slow loss of muscles. The scary loss however is in her diaphragm strength which continues to decline steadily. Breathing is not affected yet but it will be eventually. I suspect she’ll need a bipap (mechanical assist worn over the face) to sleep at night within the next year.

Today she can walk with a walker and drive a car. Right now she is at the local coffee shop having lunch with friends. Getting the walker in and out of the car however is a struggle and she sometimes needs help. We moved our bedroom to the main floor of the house so we no longer have to climb stairs which are quite difficult. And we are making plans to remodel the bathroom next winter so it is wheelchair accessible. We have a visit with the neurologist on Friday and we will ask if it time for her to be fitted to a power wheel chair as I’m told it takes 3-4 months to get it. She is still using the scooter outside and I can put it in the car and take it with us when we go shopping. She is quite a terror driving up and down the aisles in the stores. And her new golf cart arrived today so you should be seeing pictures soon on Facebook of her walking Riley out in the field by our house.

This morning we confirmed airline tickets for a trip to Aruba in January. We found a handicap accessible apartment with a pool and I’m told Aruba is fairly flat so we hope to be able to get around! I don’t know what it will be like traveling but we did get a non-stop flight from Boston to make it easier.

I’m not sure what the rest of the summer will bring. I know we have visitors in July and we may try to squeeze in a week at Cape Cod in August. She also has pots that she has already made to glaze and fire in the pottery studio. She doesn’t think she is strong enough to make pots any longer however so we will likely be cleaning out her studio and giving away her equipment. This is really sad and may take some time. If you have any pots she has made, I hope you will cherish them….

I go back to work in September but I’m only teaching 2 days a week so I can be at home to support her much of the time. We will also have an aide come in to help her during the week. We are not sure yet what she will be able to do on her own but she has fallen a few times and I am worried about leaving her alone for too long. She is stubborn (as you know) and I have to be careful not to do things for her that she is capable of doing herself. The problem is that she pushes herself and then is exhausted. I”d prefer that she push herself on fun stuff like playing with her grandchildren rather than doing housework and meals. So we’ll see how it goes.

I realize this email is less uplifting than some of my previous ones – but that is where we are at. We try to live one day at a time and appreciate all that we have rather than focus on what we can no longer do. Phyl and I often talk about how blessed we have been with amazing children and grandchildren. And on July 15 we will celebrate 45 years of marriage. We met in the cafeteria at Great Neck North Senior High School in January of 1969. If my math is correct that means we have known each other for about 50 years. I could not ask for any more in one life time than simply loving and caring for my wife.