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

 

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

Talia McKay of Williams Lake is a burn survivor who remains grateful for the support she received from the Burn Fund (Monica Lamb-Yorski photo - Williams Lake Tribune)
’You have to allow yourself the grace to heal’: B.C. burn survivor reflects on her recovery

Learning how to stand straight and walk again was a feat said Williams Lake resident Talia McKay

As a former reporter and editor at the Tribune, Diana French carries on sharing her ideas through her weekly column. (Photo submitted)
FRENCH CONNECTION: Worth taking another look at hemp for paper production

Ninety years after being deemed illegal, few are afraid of marijauna

Ranch Musings columnist David Zirnhelt. (File photo)
RANCH MUSINGS: Milking cows and strangers on the premises

Cows in a milking barn may get upset if a stranger comes

Lake City Secondary School Grade 12 students Haroop Sandhu, from left, Amrit Binning and Cleary Manning are members of the school’s horticulture club. (Monica Lamb-Yorski photo - Williams Lake Tribune)
LCSS horticulture club a growing success

Aspiring gardeners at a Williams Lake secondary school are earning scholarship dollars… Continue reading

Jim Hilton pens a column on forestry each week for the Tribune.
FOREST INK: Plenty of changes happening in forest industry

A new process produces a biodegradable plastic-like product from wood waste powder

Daily confirmed COVID-19 cases reported to B.C. public health, seven-day rolling average in white, to May 12, 2021. (B.C. Centre for Disease Control)
B.C. preparing ‘Restart 2.0’ from COVID-19 as June approaches

Daily infections fall below 500 Friday, down to 387 in hospital

Cannabis bought in British Columbia (Ashley Wadhwani/Black Press Media)
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

A vial of AstraZeneca vaccine is seen at a mass COVID-19 vaccination clinic in Calgary, Alta., Thursday, April 22, 2021. Dr. Ben Chan remembers hearing the preliminary reports back in March of blood clots appearing in a handful of European recipients of the Oxford-AstraZeneca COVID-19 vaccine. THE CANADIAN PRESS/Jeff McIntosh
Science on COVID, VITT constantly changing: A look at how doctors keep up

While VITT can represent challenges as a novel disorder, blood clots themselves are not new

Poached trees that were taken recently on Vancouver Island in the Mount Prevost area near Cowichan, B.C. are shown on Sunday, May 10, 2021. Big trees, small trees, dead trees, softwoods and hardwoods have all become valuable targets of tree poachers in British Columbia as timber prices hit record levels. THE CANADIAN PRESS/Jen Osborne.
Tree poaching from public forests increasing in B.C. as lumber hits record prices

Prices for B.C. softwood lumber reached $1,600 for 1,000 board feet compared with about $300 a year ago

The warm weather means time for a camping trip, or at least an excursion into nature. How much do you know about camps and camping-related facts? (John Arendt - Summerland Review)
QUIZ: Are you ready to go camping?

How many camp and camping-related questions can you answer?

On Friday, May 14 at Meadow Gardens Golf Club in Pitt Meadows, Michael Caan joined a very elite club of golfers who have shot under 60 (Instagram)
Crowds at English Bay were blasted with a large beam of light from an RCMP Air-1 helicopter on Friday, May 14. THE CANADIAN PRESS/Marc Grandmaison
Police enlist RCMP helicopter to disperse thousands crowded on Vancouver beach

On Friday night, police were witness to ‘several thousand people staying well into the evening’

People shop in Chinatown in Vancouver on Friday, February 5, 2021. THE CANADIAN PRESS/Jonathan Hayward
Vancouver community leaders call for action following 717% rise in anti-Asian hate crimes

‘The alarming rise of anti-Asian hate in Canada and south of the border shows Asians have not been fully accepted in North America,’ says Carol Lee

Sinikka Gay Elliott was reported missing on Salt Spring Island on Wednesday, May 12. (Courtesty Salt Spring RCMP)
Body of UBC professor found on Salt Spring Island, no foul play suspected

Sinikka Elliott taught sociology at the university

Most Read