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.

Nantel family

Just Posted

Good Food Boxes are packed in Gold River to go out to people of that community. Greenways is working on expanding the program to other communities including Campbell River. Photo supplied by Greenways Land Trust
Good Food Box program coming to Campbell River

Greenways’ program will provide food delivery to six communities in Strathcona area

Island Health chief medical officer Dr. Richard Stanwick receives a first dose of Pfizer vaccine, Dec. 22, 2020. (B.C. government)
COVID-19: Vancouver Island in a January spike while B.C. cases decrease

Island’s top doc Dr. Stanwick breaks down the Island’s rising numbers

Eden Robinson will be ‘on hand’ for a special online screening of Monkey Beach, based on her 2000 novel, presented by the Museum at Campbell River through the Tidemark Theatre Feb. 4. Photo by Bluetree Photography
Museum at Campbell River to screen Monkey Beach and Q&A with Eden Robinson

Last year’s Haig-Brown Writer-in-Residence’s work has skyrocketed to justifiable fame in the past year

Tahsis mayor Martin Davis stands with an old-growth tree in McKelvie Creek Valley. The village of Tahsis signed a Letter of Understanding with forestry company Western Forest Products to establish McKelvie watershed as a protected area. Photo courtesy, TJ Watt.
Landmark deal expected to protect Tahsis watershed from logging

Tahsis and WFP agree on letter of understanding to preserve McKelvie Creek Valley within TFL 19

Sawyer, a northern saw-whet owl that became synonymous with Mountainaire Avian Rescue Society, passed away peacefully over the weekend. Sawyer would make numerous public appearances with MARS staff in and around the Comox Valley and Campbell River. Photo supplied.
Popular MARS ambassador owl dies

Submitted MARS Wildlife Rescue has lost one of its mightiest ambassadors. Tiny… Continue reading

(Twitter/Ateachersaurus)
The Pachena Bay shoreline in 2013. (Twitter/Ateachersaurus)
This week in history: 9.0 magnitude quake struck under what is now called Vancouver Island

According to First Nations elders, the 9.0-magnitude quake in 1700 CE kick-started a tsunami

Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

Extensive water on No. 4 and 5 at the Mount Brenton Golf Course following heavy rains earlier this month. (Photo by Don Bodger)
Island golf course does a booming business in 2020

A total of 15,000 more rounds played than the previous year at Mount Brenton

SAR crews worked late into the night Tuesday to rescue an injured snowboarder in North Vancouver. (Facebook/North Shore Rescue)
Complicated, dangerous rescue saves man in avalanche near Cypress Mountain

North Shore SAR team braves considerable conditions to reach injured snowboarder

A Cessna 170 airplane similar to the one pictured above is reported to be missing off the waters between Victoria and Washington State. Twitter photo/USCG
UPDATE: No sign of small plane that went down in waters south of Vancouver Island

Searchers out on both sides of border between Victoria and Port Angeles

A tip from the public helped Victoria police located and arrest wanted men Jonathon Muzychka and Dean Reber. (Courtesy of Victoria Police Department)
Tips lead police to arrest convicted killer, robber near downtown Victoria

Two men were at large after failing to return to community facility

The Pacific Rim Whale Festival is breaching for a COVID-safe return in March. (Poster photo by Owen Crosby)
Pacific Rim Whale Festival aims for virtual return in March

Educational celebration scheduled to arrive in Tofino-Ucluelet on March 15.

In this undated image made from a video taken by the Duke of Sussex and posted on @SaveChildrenUK by the Duke of Sussex and Meghan, Duchess of Sussex, shows the Duchess of Sussex reading the book “Duck! Rabbit!” to their son Archie who celebrates his first birthday on Wednesday May 6, 2020. The Canadian Paediatric Society is reminding families that the process of raising a reader starts from birth. (Duke of Sussex/@SaveChildrenUK)
Canadian Paediatric Society says raising a reader starts from birth

CPS says literacy is one of the strongest predictors of lifelong health outcomes

Employment, Workforce Development and Disability Inclusion Minister Carla Qualtrough responds to a question during a news conference Thursday August 20, 2020 in Ottawa. THE CANADIAN PRESS/Adrian Wyld
Easing rules for parental benefits created inequities among parents, documents say

Employment Minister Carla Qualtrough’s office says the government will make any necessary changes

Most Read