What it’s like to go from RRMS to SPMS. One woman shares her experiences, symptoms, challenges, and emotions.
By Joann Dickson-Smith, told to Kara Mayer Robinson
I really don’t know when I went from relapsing-remitting MS (RRMS) to secondary progressive MS (SPMS). It was so progressive.
I was still walking when I was diagnosed in 1994. Then I started using a cane. I went from a cane to walking on crutches for 3 or 4 years. In 2000, I was using a wheelchair. Now I am totally dependent on the president.
At first, I had a relapse every 3 months or so. I could tell when things were going to change and I should go to bed. Over time, I noticed that I didn’t have as many relapses. I didn’t feel like I was getting better, but I didn’t think I was going to get any worse.
About 3 years after my diagnosis I was a 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 didn’t know 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 noticed that I didn’t do as much without help. I was careful not to trip or fall as I had already slipped and broken my shoulder. I thought it was just me getting old and awkward. I really haven’t connected it to the MS. Now, looking back, that was probably the reason.
I hadn’t realized that my MS was switching from RRMS to SPMS for a long time. I think it was in 2007 when my two boys and I moved into a one level apartment. At that time, I had a disabled accessible van and used 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 progressing and I had no way of stopping it. I asked my doctors if there was anything I could do or if there was any medication for my type of MS. But I never had any luck with the recurrent drugs. They all made me very sick. There is still nothing that helps me.
Then I made the decision to physically take charge of what I can do each day. It has become my medicine.
I try to do something every day that will help me. I participate in a wellness program that offers exercise and social programs, as well as lectures on topics such as bladder and bowel issues, pain, meditation and what you need to do to stay active. I attend practically all.
I tried adaptive yoga, swimming, core classes and cardio classes, and even some type of CrossFit. I participate in cycling events, swimming events and games with the AV. I have skied on snow and done water sports.
I have also been part of a support group for the Georgian 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 anyone. Our group focuses on lifestyle changes and owning it so you can learn to live with it.
I am in my place most of the time. I think I am slowing down. Now I have lymphedema, which is swelling, in my legs. I think it’s because of the position I’m in most of the time as President. But I do active physical and mental things to keep me going.
For example, I like to travel. Last year, when I was 60, my sister and my son surprised me by making me travel with my sister to Paris. The entire 10 days I was on a chair. But I was there. We went to the Eiffel Tower. We went to the Louvre. We went everywhere.
If I have any advice to share with others, it’s to embrace your MS because it’s really not going anywhere. It’s about making changes and asking yourself, “How do I want to live?”
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