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 含羞草研究社渢he strong, silent type, a 含羞草研究社榤an of the woods含羞草研究社� kind of guy.含羞草研究社� During the wedding, she says he appeared as though he didn含羞草研究社檛 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含羞草研究社檚 disease.
After an MRI, Nantel discovered there was a possibility her father had Huntington含羞草研究社檚 disease (HD).
含羞草研究社淚 had no idea what it was. I Googled it and found out it含羞草研究社檚 one of the worst diseases known to man. It含羞草研究社檚 essentially a combination of Parkinson含羞草研究社檚, ALS, Alzheimer含羞草研究社檚 with possible elements of Schizophrenia or Dementia. It含羞草研究社檚 all the worst things rolled into one.含羞草研究社�
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.
As his caregiver, Nantel watched as her father含羞草研究社檚 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.
含羞草研究社淎fter 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含羞草研究社檝e 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含羞草研究社檚 lots of good going on with research studies.含羞草研究社�
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 含羞草研究社渁 no-brainer.含羞草研究社�
含羞草研究社淚 just imagine some scientist somewhere will have my spinal fluid in a Petrie dish one day and will say 含羞草研究社楨ureka!含羞草研究社� I know they don含羞草研究社檛 have a lot of cerebral fluid in the first place, and what if it含羞草研究社檚 my fluid that helps?含羞草研究社�
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 h.
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