Guest post by Sarah Flohr, MS Walk ambassador
My mom was diagnosed with MS in 2000 and I’ve watched it gradually progress over time. She needed a cane, then a walker, a wheelchair, and now she’s living in a long-term care facility. I had seen through the eyes of a caregiver for my mom for years. Then, four years ago, my vision went blurry and I started having trouble seeing anything at all. I would soon have to hear the words, just like my mom once did, “you have multiple sclerosis.”
My mom’s symptoms started around 1995. She wasn’t sure what was causing them and neither were the doctors. She had symptoms with her back and was experiencing pain throughout her body. It took a really long time for them to figure out what was going on. Once it progressed to the point where my mom needed to be in a care facility, I decided that I wanted to be there for her as much as I could. My dad and I visit her every single day. My dad goes in the morning to spend time with her and help with her meals, and I’ll go in the evening and help her do simple things like drinking or even changing the channel on the TV. That’s been a big part of our lives, helping her with those day-to-day tasks.
There’s a struggle there between taking care of her and taking care of myself. I work everyday and my job is quite busy, so finding a balance is challenging, especially now that I’m also living with MS. I really didn’t see my diagnosis coming – I wasn’t prepared. One day, everything I saw just became blurry. I thought I might need new glasses, so I made an appointment with my eye doctor. They recommended that I see family doctor as soon as possible. My family doctor was concerned with my symptoms and urgently sent me to a neurologist. I had an MRI done and was diagnosed with MS shortly after.
Even though my MS is different than my mom’s, I get worried that mine might develop into a more aggressive form like hers. Seeing it have such an impact on my mom everyday is extremely concerning, but I try to remind myself that everybody’s MS journey is different. My mom is in a care facility, although that’s not necessarily where my journey of the disease will take me. It’s essential for me to remind myself of that everyday. The sad reality is that you don’t really know when or how your disease will progress. Some days, I stress about my future and how my physical or mental capabilities will be affected. Most days, I feel optimistic about my future because I’m confident we will increase access to therapies and resources that will help improve our lives, and eventually find a cure.
As a young woman, who is impacted directly by MS and also a caregiver to someone living with MS, I think it’s important to use my voice and provide my unique perspective. I can see and feel firsthand how MS affects everyone, not just those who are diagnosed. I also think it is extremely important to raise awareness and to meet individuals that are impacted by MS. One of the biggest ways I do that is through MS Walk and that’s why I help organize it. Not only do I love how the event raises an incredible amount of much needed awareness, but it’s really inspiring to see the entire community of people who show up. Even though we are there for so many different reasons or people, we are there for a common goal. We all want to fund MS research and fight for a cure. I’m confident we can get there.
Sarah is our Atlantic MS Walk ambassador and resides in Charlottetown, PEI. As a caregiver for her mom and person living with MS, she has a deep understanding of the impact MS can have. Join her at MS Walk and help us get one step closer to a cure: www.mswalks.ca