Guest post by: Donalda Martin-Gagnon
It was one morning in 2009 when I woke up and I couldn’t move the right side of my body. It almost felt like I was having a stroke, so I immediately went to the hospital.
At the time, I was working as a staffing clerk at that hospital, so I had incredible doctors that ensured that I found the answer to what was happening to my body. After undergoing numerous tests, I had an unconfirmed diagnosis of MS.
I had ignored many of my symptoms at the beginning, so the official diagnosis hit me like a ton of bricks. Why was this happening to me?
A few months after being diagnosed, I met Teresa, a woman who had been living with MS, at that time, for about 20 years. She asked me what my connection to MS was, I whispered, “I have MS.” She said, “I’m a hugger” and gave me a big hug. That night, I went home and cried because that hug meant so much to me.
In 2011, I went to my first MS support group with the MS Society. I felt so out of place, and I didn’t want to go back but my husband convinced me to give it another try. After a few weeks, it was like I was going to meet up with friends. Those support group meetings became coffee dates and now we’re all such close friends.
That same year, I decided that I wanted to do all that I could do to reach at least one person and let them know that they were not alone, so I started volunteering at the MS Society.
Eventually, I was asked to be the support group facilitator and I was honoured by that.
I have many good days, but I also experience a lot of fatigue due to my MS. I love spending time with my three-year-old grandson. It exhausts me but I love every second of it. He always wants to play “ninja” and the whole day is spent doing things together. But, when he leaves, I have to sleep for two days. It’s something I expect now and it’s all about defining my new normal and redefining it almost every day depending on how I feel. Sometimes I even push myself a little bit to see if I can break through and create a new normal.
I always try my best to be positive, even when I’m experiencing a relapse but what worries me the most about my future living with MS is the absolute unknown. Is the disease-modifying therapy that I’m taking slowing down the progression? Is there ever going to be a cure? Is there a better way of managing this disease? Could I do things differently? There are so many ways to look at an MS diagnosis and I’m constantly worried that I’m not doing all that I can to remain as healthy as I can.
Some of the mental obstacles that I’ve experienced are due to the lack of knowledge and awareness of MS. Many people don’t understand what MS is and how every day can be a new challenge while living with the disease. At times, I can feel alone but that is why I continue to bring awareness to MS. I want to ensure that the more than 90,000 Canadians living with the disease feel understood and heard.
That’s why programs like the MS Society’s peer support groups are so important. The MS support group has completely changed my life and I know that they can positively help people affected by MS across the country.
Funding support programs helps people today, but funding MS research is so vital because it has the potential to help people living with MS live a better life-long term. I’m so grateful for the immense research being done in the MS community for myself and for people diagnosed in the future. When I was diagnosed, there were only three disease-modifying therapies available. Now, there are 17!
If I could say I was cured from MS, I would finally be able to get my old life back. I miss the old me – the me that could do anything I put my mind to. Just as MS is a life-changing diagnosis, a cure would be life-changing.
Make your #GivingTuesday gift today, where your donation will make 3x the impact for Canadians living with MS, like Donalda. Your TRIPLED donation will help diminish the uncertainty people affected by MS face by providing better treatment options, support program options, and educational experience options – options to make their lives brighter. If I could say I was cured from MS, I would finally be able to get my old life back. I miss the old me – the me that could do anything I put my mind to. Just as MS is a life-changing diagnosis, a cure would be life-changing.