Last weekend, I wrote the email below to friends about the March to End ALS happening in Washington, DC on Saturday, October 4 at 11:15 am. So far, our “They Call Me Big Papa” team has raised over $3,000 for the ALS Association! I thank all of you for your care and concern for my sweet husband of 38 years and for all the people who get this rare disease, but don’t have family, friends, clinicians and advocates to care for them. If you didn’t get the email, here it is:

My husband Tom was diagnosed with ALS a year ago.

ALS (amyotrophic lateral sclerosis) is an always fatal neurodegenerative disease in which a person’s brain loses connection with their muscles. People with ALS lose the ability to walk, talk, eat and eventually breathe.

At this point in Tom’s progression, he can’t use his left arm and hand at all, and his right side is headed in that direction, fast. Though he can get around on his own two feet for now, last month he fell and broke five ribs and was in hospital for three days. He has lost over thirty pounds and because of the progressive muscle atrophy of ALS, he will never gain it back.

I have become Tom’s primary caregiver. It is sacred work and I am grateful I get to do it.

I care for Tom with a grateful heart. I am grateful I can show him how much I love him every hour of each day. I am grateful I get to support him as he supported me through my breast cancer journey, when my parents died and through all of the other challenging times in my life. He is my rock. 

And I’m grateful I am not doing this alone. I have the support of my big-hearted children, lovely friends like you, my neighbors, my yoga sangha, the clinicians at the ALS Clinic at George Washington University Medical Center and the ALS Association.   

October 4 will be the second year our whole family (including the grandkids!) will participate in the Walk to Defeat ALS at the Washington Monument. We invite you to join us there — in person or in spirit. If you can come, just email me and let me know! If you can’t attend, we invite you to join our team and send good energy our way. 

Last year, I wrote to tell you I was walking for Tom. But Tom is doing as well as can be expected. We are muddling through this awful disease.

So, this year, I’m walking for the people who receive an ALS diagnosis and don’t have a life partner, parents or children to feed them, bathe them, and help them into their clothes every day. I’m walking for people who are dealing with the crushing fatigue of withered muscles, but don’t have the insurance that pays for the five-figure-priced wheelchair. I’m walking to raise money for the ALS Association because they are the front line for these people who are alone and/or economically disadvantaged, giving grants, loaning equipment, advocating for and supporting them.

I’ll walk proud because the ALS Association was quick to advocate for maintaining the funding levels for research in midst of the chaotic ugliness of DOGE. Their laser-focused advocacy kept the funding we need to understand this thankfully rare, but utterly devastating disease. This research is key to ensuring people don’t get this diagnosis again, and if they do, there is a cure.   

I invite you to join me in support of the ALS Association this year. Here’s the link to participate.

Tom has an indefatigable spirit. He began walking again only a week after his fall with a walker in our apartment, now he only needs his cane. He received his brand-new, custom designed wheelchair (pictured above) and has already mastered many of its wonderous movements, all done with a tiny joystick that doesn’t require the use of his right arm. It is like learning the space shuttle after driving his mobility scooter around, but as you can see from his smile, there is joy in the freedom it gives him. 

Three weeks after his fall, we got to Virginia Beach for a family reunion. It was a was a shot in the arm for Tom, the one called “Papa” by our grandkids (and so now, by all of us!).

Thank you for your support of our “They Call Me Big Papa” team!

All my love,

Meg