Living with MS can present a multitude of challenges, but Stettler resident Philippa Brysiuk holds to an optimistic perspective no matter what a day may bring.
“I was diagnosed on February 7th, 2002,” she recalled. “I will never forget that date.”
And it wasn’t like she didn’t have enough to face at the time. “It started with the loss of sight in one eye the day that I was supposed to have surgery to remove a lump in my breast,” she added. At first, she thought her vision loss might be related to high blood pressure.
“But my blood pressure was just fine. So my doctor said that if I had any other neurological symptoms with it, to remember them.” Later on, her hand went to sleep.
An MRI was scheduled.
“My first symptom was in September of 2001 and I was on medication for it by June of 2002.”
May marks MS Awareness Month in Canada, and Brysiuk recently joined Stettler Mayor Sean Nolls and County Reeve Larry Clarke for an official declaration. She explained that her diagnosis was made relatively quickly, as sometimes it can be a lengthier process.
But when she looked back, she realized she had a symptom much earlier, when she was about 25.
“I had burning in my feet, and it became worse when I walked. If I sat down for a while, then got up and walked again – it was excruciating,” she explained. “I didn’t know that was a symptom until about two years into my MS journey.”
Brysiuk was initially diagnosed with the relaxing/remitting form of MS.
Now, it’s described as ‘secondary progressive’.
MS is defined as an unpredictable disease that can vary greatly from person to person, according to the MS Society of Canada.
It attacks the protective covering – myelin – of the brain and spinal cord, causing inflammation and often damaging the myelin in patches.
When this happens, the usual flow of nerve impulses along nerve fibres (axons) is interrupted or distorted.
Some of the more common symptoms include problems with balance and dizziness, depression, fatigue, gait (difficulty in walking), pain, sensory impairment, numbness/tingling, spasticity, tremor, heat intolerance and weakness.
There are a variety of ways to manage symptoms, ranging from pharmacological treatments to physiotherapy, occupational therapy, exercise programs and alternative and complementary treatments.
Looking back, the period of the diagnosis was also particularly challenging for Brysiuk as her mother-in-law had recently passed away from ALS.
“So with my symptoms, I thought either I have a brain tumour or I’ve got ALS,” she remembers. “It can’t be anything else.”
When the diagnosis was confirmed, of course it was very serious but there was a tinge of hope, too.
“When they did tell me it was MS, I thought, you mean I will get to see my kids grow up?”
She also remembered that shortly after her diagnosis, staff from the MS Society in Red Deer came to Stettler to do a seminar about the disease.
“I knew nothing about it – I had known one person with MS, and she was in a wheelchair permanently. That’s all I knew about it. So it really was the start of a learning journey for me. I have spent the past 20 years learning about MS and learning about the myths – of which there are many.”
She also feels that the more she knows about it, the better off she is.
“The more I know, the better I feel.”
But as mentioned, the challenges are very real.
“My disability level on a scale of one to 10 is probably at about a six,” she said.
“But it’s not my life – my life is my family,” she added. “There are some things that I cannot do for myself which is frustrating because I’m only 61. I should not be in the body of an 80-year-old,” she added, referring to how she can often feel.
“My grandfather died at 94, and I think that he was more physically able at that point then I am now,” she explained.
Other challenges run the gamut from constant battles with fatigue to a strong sensitivity to heat to struggles with balance.
“You never know fatigue until you have to rest after having a shower,” she said. “It’s one of the most common symptoms.
“It can also take me two days to recover from a five-hour drive. And that’s not being the driver – that’s being the passenger.”
Brysiuk also recalled that after her diagnosis, her symptoms eased off a bit for a time.
“I am a personal believer that your brain is the best medicine and that you can (make) things stay in the background for a time if you want to,” she explained. That’s not to say it can be ignored, she added, pointing to the fact she did have to eventually retire early from her much-loved job as a financial adviser at the Stettler Scotiabank four years ago.
“I personally believe there are two choices – you can either curl up in a corner and say ‘poor me’ or you can accept it and move on,” she said. “There is nothing I can do about it – it is part of me.”
That said, she is an independent person who finds joy in doing as much as she can for herself.
And she also finds fulfillment in helping others who are newly-diagnosed and in sharing her experiences at large. She’s also an avid fundraiser, having raised more than $60,000 over the years for the MS Society.
“Our team has also raised almost $150,000. And that’s just out of Stettler,” she said, referring to events such as the annual walk.
“Depression is a really bad side effect of any disease, but of MS especially,” she added. “I have felt myself being pulled down a couple of times, but I’m still able to level out. It can be issue, but I try not to allow it to be.”
That sentiment fits in well with her philosophy which is, “I have MS but…MS is just a speed bump on the road of life, it may slow me down but it won’t stop me!’
Not only is May MS Awareness Month, but May 30th is also World MS Day.
A virtual fundraising walk is held that day as well.
Brysiuk’s fundraising link is https://secure3.convio.net/mssoc/site/TR/Walk/NationalOffice?px=1917299&pg=personal&fr_id=7369
She is also open to chatting with others about MS via her Facebook page, too.
“I want to share; I want to help.”