A father’s journey
Peter Sharman and his wife, Louise, were on a cruise in the Black Sea when they received the call. Their daughter, Carol, had just been diagnosed with ALS and they were thousands of miles away. Immediately running to the computer, Peter looked up those three letters to see if what he had heard was true – it was. There was no cure for Carol’s diagnosis.
As someone who had already lost a son to a heart attack two years ago, Peter knew all too well what it felt like to lose a child. He and Louise hopped on a plane and travelled back to Canada to face the realities of ALS head-on.
Losing a loved one is immensely challenging under any circumstance. However, the experience of watching his daughter slowly lose the ability to move as her disease has progressed has been emotionally exhausting for Peter, leading to feelings of depression and bitterness.
“Balancing the anger and sadness I feel with being a parent is at times very difficult,” shares Peter. “I used to be full of vigour. I used to be funny. Now I have to pretend to be upbeat around my daughter but inside I’ve completely changed.”
Peter gains strength from watching Carol “embrace her challenges with gravitas” – a 
testament to her strong-willed and determined personality. Rather than passively accepting the future, Carol has become an ALS Canada Ambassador, sharing her story and championing the cause to raise awareness and funds and advocating for the needs of people living with ALS. Carol was also recently appointed to the PALS and CALS Advisory Council of the International Alliance of ALS/MND Associations.
“Carol has taken this diagnosis and turned it into something positive: the legacy she hopes to leave behind,” says Peter proudly.
From the perspective of a father, the ALS journey hasn’t been easy for Peter. And while he supports Carol at the WALK for ALS and other fundraising events and recently attended an ALS Caucus meeting on Parliament Hill, Peter felt there was more he could do.
In early 2018, Peter published a paper titled “My Daughter has ALS: A Father’s Journey.” Through this publication, Peter hopes to present the ALS experience from a parent’s perspective, raise awareness of the disease, highlight the need for government support and increase the speed of research for a future without ALS.
“Knowing that there is a possibility for research breakthroughs brings me comfort,” he says. “But at the same time, new discoveries run the risk of generating false hope for our family because we know that they won’t save Carol. It’s about the momentum and knowing that we all share the same end goal.”
Through all the challenges that Peter has experienced in the past couple of years, he has also made some positive life changes that benefit both himself and his daughter. For example, Peter and Louise recently moved to Ottawa from Montreal to be closer to Carol and her husband, Travis. This allows them the flexibility to see Carol often and offer support when needed.
They have also made travelling with Carol and Travis a priority — recently, they went on a cruise from Singapore to Tokyo and from the Baltic Sea to Russia.
“Cruises are the best way to travel for someone living with ALS,” says Peter. “The rooms are accessible and Carol can rest whenever she needs to.”
As Carol approaches her fifth year living with ALS (a tentative milestone given that the typical prognosis of the disease is 2-5 years), Peter is reflecting on what he has learned along the way.
“It’s important for people living with ALS to do the things they want to do while they still have the time,” he urges. “And for parents, it’s important to know that your child is still the same deep inside. Carol may be losing her abilities, but she is fortunate to still have her mind. She still has her humour – she’s still my Carol.”
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