Participants from the 2017 BC Walk for Huntington Disease. The virtual event this year is set for Sept. 13. Photo submitted

‘It’s all the worst things rolled into one’: B.C. woman advocates for awareness, funds for Huntington’s disease

The virtual BC Walk for Huntington Disease is set for Sept. 13.

Eight years ago, Lesley Nantel noticed that something was different with her dad on her wedding day.

The Maple Ridge resident describes her father as “the strong, silent type, a ‘man of the woods’ kind of guy.” During the wedding, she says he appeared as though he didn’t know what was going on. Previously, she recalls mild movement issues and he had difficulty with his speech and memory.

Following a motor vehicle incident that landed her father in the hospital, she had a hallway conversation with a doctor and inquired if her dad had Parkinson’s disease.

After an MRI, Nantel discovered there was a possibility her father had Huntington’s disease (HD).

“I had no idea what it was. I Googled it and found out it’s one of the worst diseases known to man. It’s essentially a combination of Parkinson’s, ALS, Alzheimer’s with possible elements of Schizophrenia or Dementia. It’s all the worst things rolled into one.”

According to the Huntington Society of Canada, HD is a hereditary, neurodegenerative illness with physical, cognitive and emotional symptoms. HD is caused by a mutation in the gene that makes the protein called huntingtin.

RELATED: Book chronicling local man’s 20-year experience with Huntington’s disease now available

As his caregiver, Nantel watched as her father’s health decline. She decided to get involved with the society to find support, learn more and to assist with fundraising.

She soon found out the disease is hereditary, and there was a 50 per cent chance of her eventually getting HD.

Nantel debated for months if she should take a predictive test which would determine if she would test positive or negative for the gene.

Eventually, she took the test and tested positive. As a result, her son now has a 50 per cent chance of getting HD. Although Nantel did receive a positive test, she is not diagnosed with the disease, as she currently does not have any symptoms.

“After I got the test results, I went to the UBC Botanical Garden, and I just wanted to take some time for it to sink in – I wanted to sit with the results for a while. I’ve come to terms with it now. I went on with life for a bit, I took some time off from work. But since then, I try to stay really positive. Of course, I have bad days – I try not to have a pity party. I also know there’s lots of good going on with research studies.”

Since finding out her results, Nantel decided to participate in HD research at the University of British Columbia and is an active participant in their longitude study as well as their CF spinal fluid study. Once a year she has a spinal tap and donates 20ml of cerebral fluid. She says her decision to participate was “a no-brainer.”

“I just imagine some scientist somewhere will have my spinal fluid in a Petrie dish one day and will say ‘Eureka!’ I know they don’t have a lot of cerebral fluid in the first place, and what if it’s my fluid that helps?”

Currently, there is no known treatment available, but Nantel is optimistic. She believes within her lifetime, perhaps even within five to 10 years, there may be a treatment option. Right now, there are various trials in different stages of human testing.

She stays up to date with research and utilizes resources available through the B.C. chapter of the HD of Canada, particularly participating in a support group. Additionally, she was recently nominated as president of the provincial chapter and is helping organize the (virtual) BC Walk for Huntington Disease, which is set for Sept. 13.

The walk is encouraging everyone to exercise with their closest family friends while socially distancing wherever is most convenient to them.

Nantel will be participating in a Facebook Live on the day of the walk and all donations received until Sept. 30 will be doubled thanks to a donor. The goal of the walk is to raise $40,000.

For more information about the walk, visit https://p2p.onecause.com/bcwalk.



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Manny Abecia participated in a previous BC Walk for Huntington Disease. The virtual event this year is set for Sept. 13. Photo by Meghan Andrews.

Nantel family

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