Fight for Harley in his battle with Bulbar ALS.

Hello, my name is Joel Spiller, but I represent a group of close family that has helped to put this together.

In 2021 our father, Harley Spiller, after many tests and hospital visits due to loss of functions, starting with his voice, received the terrible diagnosis of Bulbar Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. Bulbar disease accounts for the majority of the worst symptoms of ALS. He was 67 years old and retired at the time. He is now 68 years old.

"ALS affects the nerve cells that control voluntary muscle movements such as walking and talking. ALS causes the motor neurons to gradually deteriorate, and then die. Motor neurons extend from the brain to the spinal cord to muscles throughout the body. When motor neurons are damaged, they stop sending messages to the muscles so the muscles can't function. ALS is inherited in 5% to 10% of people. For the rest, the cause isn't known."

Source: mayoclinic.org

This diagnosis has devastated his family and close friends including his wife Joyce, his three sons, and their partners. Joel, Samantha, their daughter Harlow (his Granddaughter), Justin and Kaitlin, and Seth. There is no cure for this progressive neurological disease.

The goal of this fundraiser is to help cover the costs of respite care, extensive home modifications, specialized equipment, and assistive technology that will make daily living easier. These unexpected expenses will have a significant impact on our parents' retirement savings. Our intent is to lessen the financial burden of these needs. We are currently trying to raise $10,000.

We are lucky to be in a province that provides many of the basic needs through support programs such as Shared Health, Home Care, and ALS society donations. The out-of-pocket costs will be needed to cover the following

1. Respite care

2. Lift or ramp for his wheelchair

3. Equipment to transfer him physically from the bedroom to the bathroom or shower

4. A wheelchair-enabled van or handi-transit type transport costs

5. An Electric Wheelchair

6. Funeral Expenses

7. Repair costs to restore the house to pre-ALS condition after

8. Other medical needs and unexpected costs that they will have to cover themselves

When my father's first symptoms appeared he didn’t know then what was causing them. In his words: “I could tell that my ability to speak and enunciate clearly had changed. I had trouble saying certain consonants and some words sounded a bit slurred to me. No one else could hear this, including the neurologist. As my speech got worse and other symptoms appeared, I was initially diagnosed with Myasthenia Gravis in the early fall of 2021. It wasn’t until November 2021 that the diagnosis changed to ALS after a neurology test identified the cause of the symptoms. At that point, the diagnosis of Bulbar ALS projected a life span of 2 - 5 years for the majority of those who have it. I’m now in year 2.”

He wrote this recently, as a way to express the real impact of the disease

“ALS is unrelenting, unforgiving, and unremorseful to its victims. It randomly steals our lives, bit by bit, and gives us no quarter. Every day I wake up and wonder what ability has been impaired, impacted, or lost today. Every day I have to reassess, adapt and find a path to get through my day with at least a modicum of self-respect and hopefully, some happiness.”

A very sad outcome of this disease is the loss of his speech and the sound of his voice. My father has always been an engaging talker. He would tell stories, jokes and hold lengthy discussions with family and friends. He loved to sing and learned to play the ukulele to accompany himself. He was an active member of the local Ukulele Club of Winnipeg for many years. He and his fellow club members would sing and play regularly, and give concerts to Seniors in assisted living and nursing homes. He had to give that up with the loss of his voice and stamina. He also is a skilled wood crafter who enjoys making toys for his granddaughter. He is quickly reaching the time when he will no longer be able to do that type of hobby.

Loss of communication effectively imprisons him in a state of isolation. He now uses text-to-speech AAC (Augmentative and Alternative Communication) apps on his iPad to communicate. This has the most impact on his mental health. He finds typing too slow and frustrating and is unable to take part in most discussions. He is also using a G-Tube to feed.

He describes one of the worst consequences of ALS as losing one of the most important relationships in his life and that is to his only grandchild, a three and a half year old girl. In his own words, he says: "The saddest result of ALS is losing the relationship I had with Harlow. We would regularly sing together, dance around the house or yard, and play ukulele together. Even now I can feel us drifting apart because I can’t really play with her and she can’t understand me. I am trying to rebuild our relationship with my current limitations."

In closing, I would like to thank everyone who spent time reading about our Dad. All donations will go toward Harley's care and living expenses. You can make a world of difference in a stranger's life and we would be forever grateful to everyone and anyone who would help them in these trying times. Thank you, everyone.