It first started with a limp while carrying my one-year-old daughter on a hike to Calf Creek Falls in southern Utah in 2000. After years of searching for an answer as to why my walking and fatigue were getting steadily worse, in 2015, I received a diagnosis of primary progressive multiple sclerosis (PPMS). Wow, finally I had an answer. Today, I am no longer able to walk on my own, and I utilize a wheelchair much of the time.
My progression is most likely very familiar to many with PPMS. It started with that limp, then went on to needing one cane, then two canes, then a walker, then a rollator, and finally, the wheelchair.
Ah, the wheelchair. That’s what I most want to talk about. For years I resisted it even as my ability to enjoy the things I love to do and people I like to see faded into a past life. My wife would say, “Steve, use a wheelchair if you need to. It would make things so much easier.” But pride got in the way.
Finally, I gave in. And what a difference it has made.
I’ve always been an active person. One thing I have learned in this battle with MS is the need to stay positive and remain as active as possible. To achieve that, I use whatever tools are available. This is where the wheelchair comes in. For me, it is a tool to stay active in life.
I swim three days a week. Swimming keeps me going. I cannot get from the parking lot to the pool on my own; it is the wheelchair that gets me there. The wheelchair is my vehicle to reach poolside. I love to garden, and I use the wheelchair as my tool to get around the yard. I attend a monthly MS support group, driving there in a car with another vital tool—hand controls. The wheelchair then gets me from the curb to the meeting, which is a distant two floors away.
Two highlights in my journey with a wheelchair stand out. One of them was going to see one of my favorite artists in concert, Tom Petty and The Heartbreakers, three months before Tom Petty’s death in 2017. I went with my now eighteen-year-old daughter. The other highlight was skiing at the Crested Butte, Colorado adaptive ski center in March of this year. Neither of these two highlights would have been possible without the tool of the wheelchair.
In November of this year, I participated with the Run A Myelin My Shoes (RAMMS) team in the 8K race that is part of the Richmond, Virginia, marathon. I utilized a liberating third wheel attached to the wheelchair. We will be repeating this adventure next year by taking part in another similar event. I would love to see other wheelchair users with MS join this team either in person or virtually wherever you are located. The RAMMS team can provide dedicated help for those who need an extra push for any part of the event.
I know that MS is a crazy disease which affects us all in many different ways. Staying active is so important, and we need to use whatever tools are available in order to fully enjoy life as much as we can. The wheelchair has been the primary tool that allows me to do the things I love to do, and it has made my wife’s life much easier as well.
Playing the drums, which had been effortless and fluid, has become decidedly effortful and deliberate.