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

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.



photos@comoxvalleyrecord.com

Like us on Facebook and follow us on Twitter

Get local stories you won't find anywhere else right to your inbox.
Sign up here

 

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.

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

Nantel family

Just Posted

Patricia Taylor and Debra Strut at the Salvation Army on Friday, Nov. 27, handing out winter boots and gift bags to those in need. Taylor says they'll be back until all her supplies are gone.(Mandy Moraes photo)
Parksville residents distribute gifts and winter boots in Salvation Army parking lot

‘I’m hoping to open the eyes of the community to realize that everybody has value’

Qualicum Beach resident Harold MacDougall won $75,000 off a Casino Royale II Scratch & Win ticket, purchased the ticket at Qualicum Foods on Memorial Avenue. (BCLC photo)
Qualicum Beach man $75K richer thanks to scratch-and-win ticket windfall

MacDougall plans on trips to Cape Breton and Scotland

Regional District of Nanaimo will be receiving $1.17 million from the B.C. government in COVID-19 safe restart grant money. (News Bulletin file)
Regional District of Nanaimo directors getting started on budgeting decisions

Proposed tax requisitions for 2021 range from 7.3-per cent increase to 2.2-per cent decrease

David Darmadi, owner of Kalvas - The Log House restaurant, is offering a sweet initiative for SOS. Guests can bring in a new, unwrapped gift or financial donation for SOS, and receive a free dessert. (Lissa Alexander photo)
Sweet initiative to support Parksville Qualicum Beach residents

‘A lot of our guests are very generous and they want to help out’

Environment Canada has issued a special weather statement forecasting windy weather Sunday and Monday. (News Bulletin file photo)
More windy weather on the way for Vancouver Island

Environment Canada issues special weather statement for Victoria, east coast of Island, north Island

Idyllic winter scenes are part of the atmosphere of the holiday season, and are depicted in many seasonal movies. How much do you know about holiday movies? Put your knowledge to the test. (Pixabay.com)
QUIZ: Test your knowledge of holiday movies and television specials

The festive season is a time for relaxing and enjoying some seasonal favourites

Black Press Media and BraveFace have come together to support children facing life-threatening conditions. Net proceeds from these washable, reusable, three-layer masks go to Make-A-Wish Foundation BC & Yukon.
Put on a BraveFace: Help make children’s wishes come true

Black Press Media, BraveFace host mask fundraiser for Make-A-Wish Foundation

A man walks by a COVID-19 test pod at the Vancouver airport in this undated handout photo. A study has launched to investigate the safest and most efficient way to rapidly test for COVID-19 in people taking off from the Vancouver airport. The airport authority says the study that got underway Friday at WestJet’s domestic check-in area is the first of its kind in Canada. THE CANADIAN PRESS/HO, Vancouver Airport Authority *MANDATORY CREDIT*
COVID-19 rapid test study launches at Vancouver airport for departing passengers

Airport authority says that a positive rapid test result does not constitute a medical diagnosis for COVID-19

A small crash in the water south of Courtenay Saturday afternoon. Two men had to be rescued, but reports indicate there were no serious injuries. Photo by Mike Chouinard
Small plane crash in Comox Valley waters Saturday afternoon

Two rescued from plane that had flipped in water; no serious injuries reported

Screenshot of Pastor James Butler giving a sermon at Free Grace Baptist Church in Chilliwack on Nov. 22, 2020. The church has decided to continue in-person services despite a public health order banning worship services that was issued on Nov. 19, 2020. (YouTube)
2 Lower Mainland churches continue in-person services despite public health orders

Pastors say faith groups are unfairly targeted and that charter rights protect their decisions

A photo from 2017, of Nuchatlaht First Nation members outside court after filing a land title case in B.C. ( Submitted photo/Nuchatlaht First Nation).
Vancouver Island First Nation calls on B.C. to honour UNDRIP in historic title case

Nuchatlaht First Nation says Crown counsel continues to stall the case using the ‘distasteful’ argument that the Nation ‘abandoned’ their land

West Vancouver Island’s Ehattesaht First Nation continues lock down after 9 active cases were reported today after a visitor tested positive last week. (Ehattesaht First Nation/Facebook)
Ehattesaht First Nation’s COVID-19 nightmare: nine active cases, a storm and a power outage

The Vancouver Island First Nation in a lockdown since the first case was reported last week

114 Canadians were appointed Nov. 27 to the Order of Canada. (Governor General of Canada photo)
Indigenous actor, author, elder, leaders appointed to Order of Canada

Outstanding achievement, community dedication and service recognized

The Ahousaht First Nation confirmed its first case of COVID-19 on Nov. 26, 2020. (Westerly file photo)
Ahousaht First Nation on lockdown over COVID-19

“Emotions are high. The anxiety is high. We want our community to pull through.”

Most Read