TO: Family and Friends
While it hasn’t been that long since my last email, Phyl asked me to let you know about our trip to Aruba and our most recent visit with her neurologist. Of course, many of you saw the pictures on Facebook of Phyl floating in the Caribbean. My greatest joy was watching her float (with a noodle for support) and the HUGE smile on her face in the beautiful blue waters off the beach. She did a bit of snorkeling and was able to see lots of colorful fish. When Phyl is in the water, she says she feels almost “normal”. We were there for 3 weeks and found a beach almost every day!
Of course, getting her to the water was a trick. We had to find beaches where the water’s edge was close to a hard road where she could drive her mobility scooter. We found several that worked. She drove to the edge of the sand and then with my help she could move her legs just enough to shuffle down to our beach chairs. We did the same getting her into the water. Getting out was more difficult as it was a bit of an uphill climb. So I got into the water and she climbed on my back. I carried her up to the chairs (and only dropped her once). I also had to break down her scooter and lift it into the back of the rental car several times a day. I surely missed our van with the retractable ramp that she can drive her scooter right into! Frankly, I think I”m too old for all this lifting (when we got back to Boston, Jake threw her on his back and carried her up and down the stairs like a rag doll)!
Anyway…. great food, sun and warm weather were a real treat. She struggles with muscle tightness in the cold although as I am writing this, Phyl and our niece Jess are out on her golf cart walking the dog in the fields by our house. The cart goes through the snow pretty well! For the past two winters we have been able to stay warm in Costa Rica and Aruba. I don’t know if there will be another big trip in our future however as getting around is getting difficult. We do intend to visit her Dad and Florrie in Florida next month which is much less of a daunting trip.
Back on the home front, we’ve had contractors in the house for the past few weeks remodeling the downstairs bathroom. In another 2 weeks or so we will have a drive-in shower and fully accessible bathroom! This will make life MUCH easier for Phyl as she can’t get upstairs any longer and getting in and out of a tub is difficult (and a bit dangerous). I’ve been taking her to neighbor’s houses for her showers while the bathroom is being remodeled! And the ALS Association is loaning us a rolling shower chair.
So… speaking of the ALS Association. You remember last year when Phyl raised over $8,000 for the Western Mass ALS Walk-a-Thon (she was the second highest fund raiser for the event). Well, we are doing it again. First thanks to those of you who have already signed up or donated and for the others, here is the link if you want to help out:
- To sign up as a team member and joining us on the walk (May 18 in Northampton) use this one: Join our Team – Phyl-in-Tropics.
- And if you want to donate but can’t be there for the walk, use this one: Donate to Phyl’s Team
It is a bit confusing but the money all goes into her contribution to the Massachusetts ALS Association. We are big fans of the Association as they helped to fund the experimental drug trial she is on. In our visit with her neurologist this past week, we agreed that the drug has made a significant difference slowing her disease progress. That said, the disease is indeed getting worse. As I mentioned in my last email, her lung capacity took a big drop over the past 3-6 months. She is now about 50% lung capacity and this triggers a couple of things.
First, we are getting a non-invasive breathing assist machine called a Bipap. It is a mask she can wear while watching TV or at night to help breathe in good air and most importantly expel carbon dioxide. Research shows that the Bipap extends the usable life of her diaphragm, gives her more energy, and may help her sleep at night. The other thing we are looking at is a feeding tube that will be inserted in her belly. This is to help provide nutrition as she loses her ability to chew and swallow. It is not needed now, but they want to do the surgery while she is strong and healthy. We have not made a commitment to this yet, but it is in the near future I suspect. We are seeing another doc for a second opinion but this is what everyone recommends.
So, while we love her neurologist at UMass Medical Center in Worcester, this hospital is primarily a research facility. We went there for the experimental drug trial and to get close to Dr. Robert Brown who everyone says is the top ALS researcher in the nation (and also a really nice, grand-fatherly like man). But we will be going back to Lahey Clinic in eastern Mass for regular support and care from now on. Lahey is known for their supportive care team and they do no research. We were impressed with them when Phyl was first diagnosed but at the time really wanted to get into a research trial so we switched over to UMass Medical. At this point, we need palliative care so its back to Lahey. The good news is that we can visit Aunt Helen, Jake, Shannon and our grandsons when we go to eastern Mass!
We are not sure why her rate of muscle and diaphragm loss has increased so dramatically but Dr. Brown thinks it may be related to her weight loss. She has been slightly queasy on and off for some time and is eating less. She is just not hungry and has lost 17 lbs over the last year (and 8 lbs just this past 3 months). So after our visit to UMass Medical, she made a commitment to get fat! She dropped the dairy-free and gluten-free diets and we are back to bread and ice cream! We eliminated a couple of the vitamins, supplements and drugs that might be causing the stomach problem and she will see her GP soon to investigate. We also think the folks at Lahey Clinic will be able to help. This is pretty scary as there is a direct relationship between weight loss and muscle loss in ALS patients. So we have a new mission….. fattening her up!
Oh yes… one more thing. If you call her and she seems to have trouble talking, please ask if she wants to talk at another time. With the loss of lung capacity, talking is an effort sometimes. You might even text her ahead of time before you call to see if she is able to chat. She LOVES talking with you all, but sometimes can’t find her voice. We are working on a computer talking program that she can type into and talk for her, which will be needed someday. This isn’t a problem all the time (last night she yelled at our dog and surprised me with the strength of her voice). And she and Jess just returned from their adventure in the fields and she yelled down the hall to tell me how much fun she had! But it is a concern and it would be good if you were aware.
Damn…. this all sounds pretty depressing doesn’t it? Honestly, we are pretty happy much of the time. We love doing things together even though our options are limited. We have good friends (last night we were at the Cunningham’s house for dinner with friends and Phyl had a wonderful time). She has lots of friends stop in to say hello or go out for coffee (Phyl is still driving her accessible van). Her friends deliver meals to us twice a week (since I am doing all the cooking this is MOST appreciated). Our family continues to show up and and be attentive (Jeremy and Sam will be here next weekend and we visited with our other two son’s families just recently). Our son’s call their Mom regularly, Dan and Jen stop in to say hello at least once a week, Jess is doing a puzzle with Phyl right now, we will visit with Milt and Florrie soon, my mother was here for Christmas, her friends call, and everyone is thinking of her all the time. I know this is true.
We are dealing with a lousy situation but I feel grateful that we have the support and the resources to make Phyl’s day as comfortable as possible. We have an aide come in three morning’s a week and this will increase over time. Thank God we bought her a Long Term Health Insurance policy (just one year before she was diagnosed). This will help cover home health care and nursing visits if needed for the next 5 years. It was expensive but without it, we would be in trouble. And I am looking at retirement next year. I’m off for the summer but I committed to teach next fall – but not the spring semester next year. Nothing official yet but I’m phasing out of my campus work and will probably continue to teach online, which I can do from home. My first job is caregiver for my wife.
So… that’s enough huh? Sorry if its a lot but that’s the deal… we try to live one day at a time and accept life on life’s terms” And of course we try to remember to be grateful for all of the gifts we have and most of all for your love and your support.
Love to you all….
John
Changing the Story 