Diana Levin's Fight Against ALS

February 24, 2024, Diana died peacefully at home, surrounded by our family, children Courtney, Josh, Alex and me. She fought valiantly against this horrible disease, with grace and dignity. I want to thank each and every one of you who contributed to this Go Fund Me, it helped us so much to cover the enormous expenses associated with this disease. If anyone wishes to honor Diana's memory, please consider making a donation to Compassionate Care ALS at www.ccals.org

Her obituary can be viewed at www.desmondfuneralhomes.com

Although my heart aches, I am happy to know so many wonderful, caring, compassionate people are out there.

Tom Levin

I never in a million years imagined this: the love of my life struck down by ALS. These three letters are like an atomic bomb going off over us. We have lived a wonderful life, sharing so much, great family times, great friends, travel, many long walks, and now I am witness to Diana losing the ability to speak, walk and swallow. She is the most compassionate person I know, and now she is in need of others for help.

I met Diana at L.L. Bean, the iconic outdoor retailer in Freeport, Maine, in 1984 where she was a supervisor in the call center. We both ended up working there for over 30 years. Diana had several different supervisory positions over the years, and one thing was always constant – her compassion for her employees. She really cared about them, besides helping them achieve department goals, she wanted to know about their families and really listened when they came to her. People have always felt comfortable opening up to her, I think this is because they could recognize she was genuine, she really did care.

Diana has always been active, we always enjoyed taking long walks, and she would work out in the fitness center at work over the years. Her greatest joy has been our family, three children and one incredible granddaughter.

In the summer of 2022, she began feeling twitching in her leg and hand muscles. Then in the fall we noticed a slight slurring of her words. After getting a referral to a neurologist, she had many tests done in December and January. The doctor felt the results were inconclusive and suggested we come back in six months for a recheck. Then her legs started getting weaker in the spring and we got her doctor to give us a referral to Mass General in Boston. On June 29, 2023 she got the definitive diagnosis – she has ALS.

It is heartbreaking to witness her losing the ability to speak, walk and swallow. Talking is how she has communicated all her life, and to lose that ability is especially difficult. Diana has faced this disease with such grace and an attitude that amazes us all. She wants to try to do as much as she can for as long as she can.

From Diana:

“The day I got my diagnosis our lives changed forever. This was not the outcome I wanted, but one I suspected I had. My primary concern is for my husband Tom and our three kids and my granddaughter. Tom and I have loved each other for 36 years and I knew when I met him that he was special. He has taken care of me since my diagnosis and has been a loving partner. We have a great support system of family and friends. But now the one who has so always cared so lovingly for me will be left with few resources and pain of loss, because this disease is eroding our modest savings.

It is a strange process, living in my body, that was once strong and fit. The weakness in my legs makes it impossible to walk without assistance. My speech has been compromised, which makes it difficult to communicate, when I was once a strong communicator. This disease is devastating, for my family and friends. It is incurable and I do not fear what’s ahead, but I hate leaving my family, and especially Tom.”

Financial contributions to this fundraiser will help with the enormous financial costs of dealing with this disease. We have always lived a frugal middle-class life; we aren’t wealthy, and the costs caused by this disease are staggering. Some of the expenses already incurred are:

• We had to do a major remodel of the house to be able to stay here, making it wheelchair accessible: $27,000

• A motorized stair chair has been installed: $5000

• Ramps for the front and back ordered: $3500 (plus $350/month)

• A medicine shown to have success slowing the progression of the disease: $2500/month

• There have already been many medical costs not covered by insurance, high co-pays, medical equipment to buy or rent

• Some unknown costs in the future include medical equipment to help Diana stay in our home and home health aides which average $30/hour (could average $3500-$4000/month)

Thank you for any financial support you can offer. Diana is lucky to have such a supportive community of caring friends and family.

With love and appreciation,

Tom

Tom Levin

Diana’s husband

UPDATE (January 2024)

I really didn’t want to have to do this. Our first round of fundraising for Diana was very successful, and I thought it would last us a while. But never having experienced anything like this before, I didn’t realize how many expenses there would be and how much things might cost. So here I am, asking again, even to those who were so generous before, if you can possibly help us once again. I want to be honest and as transparent as I can, so I will tell you exactly what we are spending, and what we need money for that is coming up.

But before I do that, I’d like to give you a quick update on Diana’s condition. If you read my update from before Christmas you know Diana has not been able to speak for some time and has a feeding tube which we use to give her meds, nutritional supplements and water. Her legs had been weak for some time, and she had been using a walker with assistance. Well, I’m sorry to say that as of a few weeks ago, Diana can no longer walk at all, or stand on her own. She is in a wheelchair full-time now. When we were at Mass General last week, her team recommended we start the process to get a power wheelchair, which we have just done.

Now for the financial impact of all this. Here is a listing of our current monthly medical expenses as well as the future cost of a few items.

Drug for ALS which has shown success slowing the progression:

Radicava – our copay is $721.59 a month

Nutritional supplement which is the main source of what Diana “eats”, given through her feeding tube - $900 a month

Rental on medical equipment:

Bi-pap machine for breathing - $236.10 a month

Cough Assist and Suction machine - $126.56 a month

Power wheelchair – Medicare pays 80%, we pay 20% (haven’t picked out exact chair but copay should be $500-1000)

Whole house generator – If you live in Maine, you know we have quite a few storms where power goes out, sometimes for a few hours, sometimes for days. With all the medical equipment we need a generator that will kick in as soon as power is lost. The one we are getting is a Generac and the total cost will be $12,500

Whether you can donate for the first time, or you can donate again, or not at all, please know how much we both appreciate your genuine care and compassion for Diana. It means so much.

With love, Diana and Tom