By Joann Dickson-Smith, as told to Kara Mayer Robinson
I really don't know when I transitioned from relapsing-remitting MS (RRMS) to secondary progressive MS (SPMS). It was so gradual.
I was still walking when I was diagnosed in 1994. Then I started using a cane. I went from a cane to walking with crutches over 3 or 4 years. By 2000, I was using a wheelchair. Now I’m totally dependent on the chair.
In the beginning, I had a relapse every 3 months or so. I could tell when things were going to change and I’d have to go to bed. As time went on, I noticed I wasn’t having relapses as much. I didn't feel like I was getting better, but I didn't think that I was getting worse.
About 3 years after I was diagnosed, I was a little bit slower. I had a two-story house, which was difficult. It was hard to go upstairs, then wait until I felt better to go downstairs, especially since the kitchen was there. But I really wasn’t aware that my MS was getting worse. I had a 3-year-old at the time, and I had a new baby, so I was busy.
But I did notice I wasn't doing as much without assistance. I was being careful not to trip or fall because I had already slipped and broken my shoulder. I thought that was just me getting older and clumsy. I really didn’t connect it to the MS. Now, looking back, that probably was the reason.
I didn’t realize my MS had transitioning from RRMS to SPMS for a long time. I think it was 2007, when my two boys and I moved into a single-level apartment. By this time, I had a handicap-accessible van, and I was using the power chair more. Everything was more stressful for me. That’s when my doctor told me it was secondary progressive MS.
Emotionally, I felt like my MS was going forward and I had no way of stopping it. I asked my doctors if there was anything I could do or if there were any drugs for my type of MS. But I never had any luck with the relapsing-remitting drugs. They all made me very sick. There’s still nothing that helps me.
I try to take part in something every day that will help. I’m involved with a wellness program that has exercise and social programs, as well as lectures on things like bladder and bowel problems, pain, meditation, and what you need to do to stay active. I pretty much attend all of them.
I’ve tried adaptive yoga, swimming, core classes, and cardio classes, and even a type of CrossFit. I participate in bicycle events, swimming events, and games with the VA. I’ve snow skied and done watersports.
I’ve also been part of a support group for the Georgia chapter of the National MS Society for almost 20 years. It’s specifically for African Americans because as a group, sometimes they don’t accept it at first. They don't want to tell anybody. Our group stresses lifestyle changes and owning it so you can learn how to live with it.
I’m in my chair pretty much most of the time. I think I’m getting slower. I have problems now with lymphedema, which is swelling, in my legs. I think that’s because of the position I’m in most of the time, in the chair. But I'm doing active physical and mental things to keep me going.
For example, I love to travel. Last year when I turned 60, my sister and my son surprised me by giving me and my sister a trip to Paris. The whole 10 days, I was in a chair. But I was there. We went to the Eiffel Tower. We went to the Louvre. We went all over.
If I have advice to share with others, it’s to embrace your MS because it’s really not going anywhere. It’s a matter of making changes and asking yourself, “How do I want to live?”