Brave MacLeod Fights ALS Fund

Dear Friends and Family,

On May 1, 2015, three months before I would turn 61, I lost my job. I was told that I couldn’t lift seventy pounds, a new requirement for the position I held. I wasn’t sure why I was unable to do so, being a regular gym member.  

While I struggled with not wanting to share the news with anyone, shortly after, I noticed a drop in my right foot as well as a growing balance problem. Nothing major, but noticeable. I thought it was related to stress due to being unemployed.

I kept a good attitude, enjoyed my life with my grandchildren, 9 y. o. Ava, and 3 y. o. Landon, and I continued to do what I loved most, what has always defined me as a person, which is to serve others. I used my time volunteering for the Highland Scottish Games, which I have done for the past 25 years. I held several positions at St. James Episcopal Church in New London, and I was an active member of the Freemasons. With my deteriorating muscle, I can no longer attend my Freemason meetings. I also continued my role as Clan MacLeod Vice-President of the New England Region, and enjoyed doing Highland Scotland festivals up and down the east coast during the summer of 2015. I worked late into the night applying for any and all jobs. I made pallet tables for our daughter’s upcoming wedding. I enjoyed more time with Buddy, our wonderful rescue dog. I looked forward to a future traveling with my beloved wife Betsy in a long retirement not too far away. I planned to take her on her first trip to Scotland, where I dreamed of visiting the place of my MacLeod heritage, Dunvegan Castle. I looked forward to seeing Nova Scotia for the first time to visit where my grandfather landed in North America, and to a full family trip to Disney. With much joy, I anticipated walking my youngest daughter down the aisle. I looked forward to living life.

But we knew something was wrong and I was unable to keep and find work. MRI’s showed a pressing issue with my neck and my spine, and I hoped that back/neck surgery would be the answer to the weakness presenting in my right leg. Then my tendency to lose my balance increased. Following several serious falls I quickly went from using a walking stick to a cane while all doctors were in agreement: My symptoms did not support what they were seeing in my test results. They wanted to first rule out MS or Parkinson’s. I prayed and believed that back surgery was all I needed to return to normal as I graduated to using a walker following an incident that sent me to the ER and required stitches in my head. Two days before my initial evaluation at Mass General, I fell again, broke my nose, and was taken by ambulance to the hospital.

On December 8th, 2015 I was diagnosed with ALS, also know as Lou Gehrig's Disease. 

I am frightened, often sad and sometimes angry as I continue to try to cope with my ALS. But I am also determined to find the strength and courage to become my old self, at least emotionally and spirituality in the time I have left. Every day my body grows weaker as my muscles atrophy. I am no longer able to fulfill my volunteer positions, and this has hit me the hardest, the feeling of being so helpless, and having to rely on the good of others. Yet, there are ways I can give back and stay involved. My wife got an accessible table so my 4 y. o. grandson and I can build Legos together. He sets up his electric train on our living room floor so I can watch and offer advice. I have signed up for several research trials, which will hopefully help the next generation of ALS patients. I am anxious to attend my first ALS support group and to have the strength to encourage others to keep fighting and to stay positive.

My only wish as I go into this next stage of life is to be able to stay home as long as possible. It is becoming clear that our ranch style home will not support my needs as my ALS progresses to the later stages, where Hoyer, stand up, or overhead lifts will be required, as well as caregivers. We have trouble lifting me up when I now fall down (Betsy, plus one or two others, can manage to move my mostly limp 160 pounds), so very soon I will be wheelchair bound and will require home-care aid. We will need to complement what the insurance pays and make major renovations to my home where the hallways and doorways are too narrow and major ramping is necessary. Our only income stems from my wife, who has cut back her work hours to care for me, as I can’t be alone for more than a few hours at a time. Our limited retirement savings will be quickly depleted, and I struggle with knowing my family will be left with bills to pay, and no way to do so as I have no life or burial insurance. I will need a motorized wheelchair, a wheelchair van, ramps, bathroom renovations, hospital bed, and daily assistance from caregivers.

It is daunting and discouraging when I watch how this disease is affecting those who care for me, how their lives are put on hold. But for the near term what I need most is hope - seeing my house ready to serve me for as long as possible, and knowing that I will have as much time together with my family while I can still talk.

However you can help financially is greatly appreciated—I am humbled by any small contribution that will help my quality of life and assist us with the enormous financial burden we now face—and just as important I firmly believe in the power of positive thinking and prayer so please pray with me. Pray for everyone who faces this devastating disease, for which they have yet to find a cure. Pray for all who are suffering, and if anything, be kind. One small act of kindness a day goes a long way.

Your loving and humble servant,

John Stuart MacLeod