Tania Hennigar on Salt Spring Island.

Image Credit: SUBMITTED/ Tania Hennigar

A longtime Kamloops resident and former tattoo artist is opening up about her battle with Lou Gehrig’s disease, also known as ALS.

Tania Hennigar is fighting for her life against the terminal progressive neurological disorder that causes weakened muscles and loss of control of most bodily functions.

Since her diagnosis in January 2019, the 49-year-old has lost the ability to walk, use the shower on her own, use the commode and drive her accessibility hand-controlled van. Last week, she suffered a new symptom while trying to eat supper. It was the first time she felt the disease affect her ability to feed herself.

“My arm felt heavy and my wrist didn’t want to twist the way I needed it to,” she said. “I leaned forward and chased the fork around with my lips until I could finally catch up with it,” she said. “Sometimes the progression can be so slow it almost feels like it’s in your head. Then you find yourself chasing down your utensil like a drunk girl chasing the straw around a margarita bowl.”

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In hopes of slowing down the disease, that has no known cure, Hennigar recently started taking a daily treatment protocol of 50 vitamins and an unregulated drug. The drug, called Clenbuterol, has not gone through clinical trials and is not approved for use in Canada or the USA. She believes the new drug will change her current medical prognosis of nine months left of life and is already experiencing positive results.

“This province doesn’t do drug trials for ALS,” she said. “We have to go to Toronto if we are eligible and need to foot the bill. You would think that people with terminal illnesses would have the right to any treatment or drug but it isn’t so. Even the states are ahead of us as (US President Joe) Biden just changed legislation and pushed through a bill called Acceleration to Critical Treatment for people with ALS.”

Hennigar said her inspiration behind taking Clenbuterol was a clinical trial done by a neurologist in North Carolina.

“My neurologist said I should concentrate on quality of life, not on the costly intrusive treatments that are available,” she said. “The treatment I started costs about $50 per month and there are no needles, just a gel I swallow three times per day. Within the first week I was able to sit up on my own and raise my arms up over my head. I am following the same dosage as the study.”

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The unregulated drug is known to be used by sufferers of breathing disorders as a decongestant and bronchodilator, and in some veterinary applications. Hennigar said people she knows use the drug in the fitness world to burn fat and help power long-distance runs.

“It’s a neuroprotector and it helps neurotransmitters communicate with muscles and helps with protein synthesis to get the muscles the fuel they need,” Hennigar said. “I couldn’t be happier with opening the year any other way than being a badass crusader taking my life into my own hands and potentially providing feedback on something that may have positive results for ALS patients.”

Hennigar declined to reveal where she sources the drug, except to say she had to do creative networking to access it.

Hennigar is currently travelling back and forth between her partner in Kamloops and her family in Salt Spring Island. She has lived in Kamloops full-time for almost three decades, working 18 of those years as the owner of Eye Candy Ink Tattoos. She shut her business doors shortly after receiving her diagnosis and spent some time on the island painting.

She was two years into her diagnosis and wheelchair-bound when she found herself in a romantic relationship.

“My partner is my sole caregiver and I am so grateful for his love and devotion,” she said. “He has been building ramps and beach wheelchairs, navigating medical equipment and home remodeling. He has even left his amazing job and started a home-based business to afford more time to be with, and care for me. That’s a big humbling chunk to swallow and I’m so grateful.”

Hennigar is sharing her thoughts and perspectives on her Instagram account, her grief, challenges and inspiring messages of hope.

“My personal growth has been exponential and it is ironic I have ALS to thank for opening me up to a place where I can truly live and be the perfect partner for my perfect partner,” she said. “All my priorities have changed. I have softened. I am open. Healing can’t take place where resentment lives.”

Hennigar attends meetings with ALS Action Canada, a patient-led initiative that works to improve access to promising therapies for those with ALS. 

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