Ever since my multiple sclerosis diagnosis a few years ago, I’ve been writing my own MS dictionary of sorts. When I look up the word mobility in my own personal dictionary, the definition is as follows: the ability to access our legs and muscles and tissue and nerves, with all of our wiring in sync, in order to have the wonderful ability to MOVE, independently. Please don’t think I’ve excluded tools such as wheelchairs, canes, scooters, and aides that help us move freely also. They serve us well, when needed.
When you have MS, thinking about mobility and what it means to you can sometimes feel like a dark cloud looming over your head. Mobility is a big deal, and the thought of having to question it in the future can be overwhelming. Some people have visions of themselves in their future, possibly skipping with kids and the love of their life or even running in a sports bra with their girlfriends. for me, I have no visions like that; I just have the word mobility followed by a big old question mark. How long will I be able to move INDEPENDENTLY? When will I need to start thinking about tools such as wheelchairs? How will that impact me and my family?
I recently read an article that mentioned four specific ways to stay mobile longer. “What were they,” you ask? Purchase correct shoes, tweak your vehicle, look into mobility aids, and think about a service dog. While I find these tips helpful on some level, I must confess that those tips seem superficial and oversimplified. These tools seemed like something that you would use once you’re already immobile, but what I’m interested in is how to prevent that for as long as possible. It didn’t seem like the story matched the title. The question of how to stay mobile as long as possible with your, very personal MS, is a deep one; and sadly it isn’t this simple.
When dealing with mobility issues, the answers often lie in the root of your personal MS issues, symptoms, and how they present. For instance, I was sitting next to a woman in treatment, and because the treatment takes so long, she and I were chatting. She told me that she was thinking about getting a wheelchair because it is hot outside and it was just easier for her to use. For once, I had no words because to me, wheelchairs and scooters are a last resort, but for others they may not be.
I understand that moving is hard when you have a disease and a life and situations that don’t cater to your MS needs – believe me I live with it too. My spine aches and I walk funny and I’m crazy busy. But we must be honest with ourselves and we must push in the ways we can to preserve what we still have. When the time comes, and you start to climb up the ladder of adaptive technology, then we fight another battle where we need to be humble and learn that it is okay to use a cane, or a scooter etc. When that day comes, I will live a happy life when I need such tools. They will not define me.
For now though, I will work to stave off my mobility issues and move as much as possible. If you can move, move because a body in motion tends to stay in motion! It is important to wear correct footwear like we all do, be humbled and move safely. For many of us, the issue with mobility is not just lifting our legs, it is balance. If I try to walk up my stairs holding things, I fall side to side and wind up bumping my way up to the landing. I bump my way up to the landing. Because of that, it is important for me (and others struggling with balance) to reach core deep and exercise those muscles when we can.
For strengthening core muscles, I think that yoga is a great tool. Find a spot, sit with your spine up, or laying down, and breathe in through your nose, and very slowly out from your mouth. For 15 minutes, just focus on your breathing. Do this at least once a day. Studies show it does help MS. Not only does being calm settle our nerves and slow disease progression, it also helps us learn to adapt to stretches and poses. My friends, Ann and Ross Rosen, taught me this and stressed how important it was to steady me, to calm me, to ultimately stop the inflammation that progresses my MS.
When working to strengthen my core, I also love to swim. Not feeling the weight of my body (about 500 lbs is my guess-timation) in a pool is the most heavenly feeling. It’s not just the exercise that will keep you going, it is the fun. Laugh and swim and be silly - it will carry your further than you’ve ever guessed it could.
At the end of the day, it is important to be honest about mobility aides when you really need to use them. Although working out, staying centered and calm, and eating clean are important, you should always focus on doing whatever you can to stay comfortable and feel happy in your own life.