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

UPDATE: North Island Green Party nomination still to be determined

Moen says all issues should be viewed through environmental lens

COVID-19 has caused many changes for Port Hardy Fire Rescue so far this year

Port Hardy Fire Rescue’s first and second quarterly reports for 2020 were reviewed by council.

Unofficial holidays: Here’s what people are celebrating for the week of Sept. 27 to Oct. 3

World Farm Animals Day, Drink Beer Day and Virus Appreciation Day are all coming up this week

NDP candidate Babchuk a fixture in local politics since 2005

School trustee, city councillor and regional district chair sets sights on being North Island MLA

Sointula elementary school gets funding for new playground

Funding for the new playground comes from the provincial government’s Playground Equipment Program.

Weekend sees 267 cases, 3 deaths in B.C.; Dr. Henry says events leading to COVID spread

There are currently 1,302 active cases in B.C., while 3,372 people are under public health monitoring

Lightning strike: Tampa Bay blanks Dallas 2-0 to win Stanley Cup

Hedman wins Conn Smythe Trophy as playoff MVP

16 MLAs retiring from B.C. politics add up to $20M in pensions: Taxpayers Federation

Taxpayers pay $4 for every dollar MLAs contribute to their pensions

Shawnigan Lake’s Kubica gets 25 to life for murder in California

Former Shawnigan Lake man convicted of killing woman in 1990

Liberals seek to fast track new COVID-19 aid bill after CERB expires

Government secured NDP support for legislation by hiking amount of benefits by $100 to $500 per week

Join Black Press Media and Do Some Good

Pay it Forward program supports local businesses in their community giving

B.C. VOTES 2020: Echoes of HST in B.C. debate over sales tax

Cannabis, tobacco, luxury cars still taxed in B.C. Liberal plan

She warned her son about toxic drugs, then he was dead

Donna Bridgman’s son died at the age of 38 in Vancouver

Duration of Tour de Rock stop in Chemainus much shorter than usual

Four alumni riders don’t get to come for breakfast in COVID year

Most Read