TO: Friends and Family ..
I asked Phyl to write a note to you herself. It took her several hours of painstaking hitting her IPad keyboard with a pointer – and she did it. I’ve pasted it into this email below. As her body continues to fail, she struggles to maintain her positive attitude. In her letter, I can feel the struggle.
She wrote the following, just for you….
Dear Friends and Family…
Thanksgiving is upon us and it’s a wonderful time to reflect upon what we are grateful for. I know it might be hard to imagine that while dealing with ALS that there are things for me to be thankful for. I’ve had to let go of so much. In its place came an opportunity to feel the overwhelming love of family and friends. And it gave you all an opportunity to express it.
I am grateful for each and every one of you. I’m thankful for the walks around the neighborhood, the prayers, the outings, the problem solving to make situations work for me, the kisses and hugs, the food, the txt, the phone calls, my new bathroom (thx Dad), the chats on the deck (some serious and some hysterically funny) and the shoulders to cry on.
I am grateful beyond words for my incredible partner of 46 years, John. He is my hero, my rock! I couldn’t do this journey without him by my side. He has supported me with his love and his brilliance! He has done so much research that at times he knows more than the Drs! He is always ready and willing, with a smile, to help me in any way.
My heart is bursts with such love and gratitude for my amazing sons. They continue to give me so much joy and love every day. I count my blessings that they each have incredible partners whose love and support have helped them on this journey with me.
There is nothing that comes even close to the joys of being a grandparent! My heart explodes when I’m with them or thinking of them. They are the most precious little unique spirits. Our newest granddaughter, Lucia Tziporah Marine Gerber, was born on Nov 4th. I am so grateful that she is healthy and beautiful and a part of our clan!
I am thankful that there are machines and gadgets to make my life more doable. I’m thankful that I’m a slow ALS progressor!
This disease has made me “stop and smell the roses”!
I am thankful for so much in my life, but I am only human. I get overwhelmed at times with anger, sadness or fear. It is devastating to experience the loss of body functions as I have. That is why I continue to need you all to keep sharing your love and support!
Thank you all and Happy Thanksgiving!
Back to my words (John)….
It is hard to imagine that our journey with ALS has been going on for 4 years. Phyl mentioned that she is grateful that she is a “slow progressor”. In the ALS community, this is relatively rare. Most (about 75%) of the people who developed symptoms at the same time as Phyl have passed. I recently had to put this record together for a doc. Here is a summary of her disease:
Fall 2015 – symptoms began to appear (trouble breathing while running)
Fall 2016 – foot drop and weakness in left hand
March 15, 2017 – first diagnosis of ALS by a neurologist
August 28, 2017 – began Amylyx experimental drug trial at UMass Medical Center
February 2019 – respirator used over night to help with breathing
April 2019 – feeding tube surgery
July 2019 – began to use the power wheelchair regularly
October 2019 – respirator used part time during the day
At present, she has very little leg movement and some hand and arm movement. This allows her to feed herself and drive her power wheelchair around. We do regular stretching and range of motion activities in the chair to keep her muscles from tightening up. Her hands cramp up pretty badly if they are used too much but otherwise she can position herself to be comfortable in the chair and bed. She asks me to move her legs and feet regularly during the day and several times at night. This seems to work and allows her some comfort.
Those of you who have visited recently know that she needs to use her respirator at least part of the day. She can go for several hours without it so she can eat, chat and enjoy your company. She takes a breath and then is able to say a few words or a sentence and then needs to pull in another labored breath. But as soon as she is not active, the respirator mask goes back on. She wears it in the van while we drive as well. Although she can pull in a breath on her own, the respirator allows her to breathe more easily and sleep through the night. The next step would be a tracheostomy which we discussed with the docs at the Lahey ALS Clinic recently. Phyl has a difficult time thinking about this as it would prevent her from eating and speaking. She continues to hope for results from the experimental drugs she is taking. I do believe they have significantly slowed down the progress of her disease because she had several gaps when she could not take the drugs and I could observe a much more rapid decline during those periods. We have now stockpiled at least 6 months of the two drugs that I believe are helping.
Phyl does better when she has something to look forward to. Our current plan is to enjoy Thanksgiving and Christmas with family and then (hopefully) spend all of February in Florida. We’ve rented a handicap accessible house in Naples. After February, we have no long term plans but Phyl loves springtime in New England and she will direct her friends and some folks we will hire to bring her gardens back to life.
I think I mentioned retirement plans for me in a previous email. That has changed as UMass has asked me to continue to teach from home. I can teach my classes online from now on and still be available at home to support Phyl. So that’s the plan, for now. We have a health care aide who comes in three times a week to help out and we’ll increase her hours as needed.
As long as I stay healthy, we will keep on keeping on. I turned 68 years old last week (and sometimes I feel it). But mostly, I am grateful that I’m physically strong enough to care for my beautiful wife. I’ve been practicing living “one day at a time” for the past 20+ years through my 12 Step Program…. and it has prepared more than I could ever have imagined to be a caregiver. My prayer is that I”m allowed to continue to take care of Phyl for a long long time….
Love to you all….
Click here for the next email in Phyl’s story