TO: Our Friends and Family
Phyl asked me to send you an update (as we have been very busy and she is feeling pretty good right now). I’m not sure what is going on, but her attitude has been wonderful lately. Well… wonderful for someone with a chronic disease, that is. I think it may be that we have been interacting with other local folks with ALS as part of the Western Mass ALS Walk-a-thon fundraiser – and she is doing pretty well compared to most people with this disease. Or… maybe it is just the spring weather helps!
She is back on her experimental drug, Amylyx, after a 7 week break. The company could not provide the product (they were trying to make it taste better) immediately after she completed her 6 month trial. Since Phyl was the 4th person in the world to be on the drug, we were a bit out in front of the process. But after the initial drug trial period, the company offered those who have completed the trial access to the drug for the next year. While there is no indication that the drug improves her muscle ability, she is convinced that it slowed down her muscle loss for 6 months – and then she experienced a more rapid decline during the 7 weeks she was off it. We are watching and waiting on new drugs and perhaps the stem cell work to progress but for now, we are pleased to be back on the Amylyx. Her legs are quite weak and she is using a walker around the house. The leg braces help and she can still climb stairs. We’ve used her wheelchair for several trips that required more walking and now she has the scooter! Her left hand is also very weak and typing on her computer is slow. Her last evaluation also showed some loss of muscle in her diaphragm and reduced lung capacity. It is still fine for now, and her voice is strong but this is pretty scary. Fortunately, the disease progression is slow. Her neurologist told her during her last visit that “he would be seeing her on a regular basis for long time.” I hope so…..
And… with all the limitations, Phyl continues to drive her car, go to yoga, swim (up to 26 laps…. slowly), go to acupuncture and make pottery! I have been going with her to the pottery studio because she is not strong enough to carry, cut, or wedge (prepare) the clay. But if I give her a hunk of clay she can make a pot! It is slow and I know it is frustrating since in the past she would routinely make 8-10 pots in a day, and now she makes 2 or 3… but she is really happy working in the studio with her friends. I go along on her throwing day and the next day she can go alone to trim and decorate the pieces she made. This has been wonderful!
And…. with spring we have been outdoors. Yesterday she was crawling along the ground (really) in her garden pulling weeds and last week she helped Jeremy and I do a bit of raking in the yard. Aunt Helen gave her a nifty little scooter that her Uncle Martin used around the house. Phyl of course needed to take it “on the road” and has been circumnavigating our neighborhood on a regular basis with our dog Riley. This allows her to chat with neighbors (yesterday she went around the block three times and it took 90 minutes with all of the stops to chat). We also took the scooter to Look Park in Northampton yesterday and did a 3 mile loop (I had to walk) but she was truly feeling happy to be outside. The scooter gives her a sense of freedom that she has not experienced in a long time. It has been over a year since she could walk Riley and she loves it!
Mobility is a problem and she is struggling to climb the stairs in our home to the upstairs bedroom. She is able to make it – but it is difficult. We considered a elevator seat and tried one out in a local medical supply store. But Phyl knows she wouldn’t use it (too slow) and it would only be a temporary solution according to her physical therapist. So we had a contractor in last week to give us an estimate on remodeling my downstairs office and making it into a bedroom. We would also turn our guest room into a shared office space so both of us can spend most of our time on the main floor. Phyl is excited about the remodel as she is planning on opening up one of the windows and adding a skylight for more light. She is also having the closet rebuilt and we have to widen the doorway to allow a power wheelchair to fit into the room (someday). We hope to have this project completed within the next month and then move downstairs.
We also got an estimate on a big bathroom remodel to create a walk-in (shower wheelchair drive-in) shower unit and ADA compliant toilet and sink. This will also require widening the doorway and a complete remodel of our very old bathroom. While it stinks that we need to make it handicap accessible, Phyl is delighted to gut the old bathroom and do a complete redesign. This project won’t start right away because she doesn’t need to be in a wheelchair yet and it is expensive. We are also looking at ramps to get a power chair out the front door. While this is not how we planned on spending our “mature” years…. it is our life today. I know this is disturbing news for our family and friends, but we are actually doing quite well. Somehow we are learning to adjust and live one day at a time.
More changes…. we have met with a realtor about selling the back lot of our property where my gardens have been. We’ve got no time for gardens and chickens etc., so we really don’t need all this land. I’ve been meeting with the Town Planning Department as it is not quite a legal building lot. I’m working on trying to buy a bit of the neighbors property to comply with building codes so the lot can be sold eventually (its complicated). But if it works out, it will pay for all the remodeling!
Its really fortunate that I’ve been on sabbatical leave this year with all of the changes we’ve need to make. I need to go back to work in September and we’ll look at having a home healthcare aid come in a few days a week so I can go to campus. I can’t quite afford to retire yet but my hope is that I’ll be able to do so soon. As much as I love teaching, I’d much prefer to be home with my wife. Life goes on….
And… we will spend the whole month of June at the beach in Rhode Island (not far from our beautiful granddaughter Elena…. and her parents). Noah and Colin (and maybe their parents too) will visit us and perhaps Jeremy and Sam can visit. We got the same beach house that we rented last September which is about 50 yards from the beach near Pt. Judith. Phyl loves being in the water. She says that when she is floating she is not aware of her muscle weakness. Of course, I’m on guard watching her! She is looking forward to using our pool this summer as well. It is probably our last year with the pool as it will disappear along with the big back yard if we can sell the back lot. But for now, we’ll get some use out of it. More changes!
So, that’s life here at the Gerber ranch. While it might sound distressing…. we are not feeling distressed (well sometimes). Phyl has so many friends who keep her busy (she just left to go swimming with our neighbor Carol). She is excited about the ALS Walk-a-thon because so many of our family and friends will be joining us on May 12. She chose the tropical theme while we were in Costa Rica and named her team “Phyl-in-tropics”. She is asking folks to wear loud Hawaiian shirts and plans on decorating her scooter!
Thanks to all of you who have either donated and/or plan on walking with us on May 12. If you are on Facebook you can see all of the support she is getting for her fundraiser. She has raised almost $6,000 for the ALS Association (for patient care and research) as part of the Walk-a-thon. You may remember that she also raised over $5000 for the ALS “Cut-a-Thon” a few months ago. She is one of the top individual fundraisers in Massachusetts! Anyway, take a look at her team page if you wish: Phyl-in-Tropics. If you are planning on walking with us, please click on “Join our Team” to register. No need to contribute money but it is great to see so many people who are supporting her. Every time someone joins the team she gets a phone message. She gets excited and feels really supported when folks sign up.
Okay… I need to end this email. It is much longer than I intended (I don’t like reading long emails either). I hope you are all doing well with your own personal struggles. I know that Phyl and I are not the only ones with challenges. For me, I am really grateful to have this wonderful woman in my life. I know that you feel the same….
Love to all….
John
Changing the Story 