My New Normal

Being diagnosed with MS divided my life into two very distinct parts; my life before multiple sclerosis and my life after. I have heard the term “new normal” in regards to many things, including MS. It fits.

I was initially diagnosed with Remitting Relapsing MS in 2011 however, in retrospect; I had experienced symptoms up to ten years prior. At the end of 2013, my neurologist said that I had progressed to the Secondary Progressive MS stage of the disease. This makes sense if you take into account the misdiagnosed years. SPMS occurs when you no longer suffer relapses and remissions, but your symptoms instead progress steadily over time. Instead of hills and valleys, think a gradual downward slope.

I had been using a cane off and on for the past decade but my gradual slope started with transitioning to forearm crutches. I met with a physical therapist and she showed me a few different types. I decided to go with the Walk Easy lightweight forearm crutches. I highly recommend these. They give you so much more stability than a cane but aren’t as heavy as the forearm crutches you are probably familiar with where the cuff goes ¾ around the upper arm. Walk Easy crutches don’t lock in place which gives you more freedom. I used these for over 2 years. In the summer of 2012, for a family vacation, I decided to rent a Luggie Scooter because I was finding it harder to get around without getting exhausted. The Luggie is a fold-up scooter that fits in the trunk of your car. It weighs only 60 lbs. I fell in love with it while using it at Hearst Castle. I could get around and enjoy things again without worrying about the next place to rest. When we got home, we ordered one of my own. I fashioned a crutch bag to strap on to the back of the scooter and I was set. Unfortunately, after a fall in early 2014, I became dependent on the scooter and was unable to walk anymore without fear of falling. While the scooter was great for trips and smaller outings, it was uncomfortable as an all-day option. Since I work from home, I needed something more comfortable that fit me better. I met with an occupational therapist and representative from the wheelchair company and got the ball rolling on a power wheelchair.

I was never hesitant to use mobility aides –they were there to help me get around better, faster, and more efficiently. I was a little embarrassed when people saw me with my forearm crutches for the first time. I looked disabled. Don’t be embarrassed! Mobility aides are a thoughtful, smart, and safe decision. I was steadier on my feet with the crutches. When my friends saw me in my scooter for the first time, they all wanted a chance to ride it. It was fun. Now that I am in a heavy-duty power wheelchair, I have faced the fact that what people first notice about me is that I am disabled. Being in a wheelchair does not diminish the person sitting in it. I’m still me. This is my new normal.