By Joann Dickson-Smith, as informed to Kara Mayer Robinson

I actually do not know once I transitioned from relapsing-remitting MS (RRMS) to secondary progressive MS (SPMS). It was so gradual.

I used to be nonetheless strolling once I was identified in 1994. Then I began utilizing a cane. I went from a cane to strolling with crutches over 3 or 4 years. By 2000, I used to be utilizing a wheelchair. Now I’m completely depending on the chair.

To start with, I had a relapse each 3 months or so. I may inform when issues have been going to vary and I’d must go to mattress. As time went on, I observed I wasn’t having relapses as a lot. I did not really feel like I used to be getting higher, however I did not suppose that I used to be getting worse.

About 3 years after I used to be identified, I used to be a little bit bit slower. I had a two-story home, which was troublesome. It was laborious to go upstairs, then wait till I felt higher to go downstairs, particularly for the reason that kitchen was there. However I actually wasn’t conscious that my MS was getting worse. I had a 3-year-old on the time, and I had a brand new baby, so I used to be busy.

However I did discover I wasn’t doing as a lot with out help. I used to be being cautious to not journey or fall as a result of I had already slipped and damaged my shoulder. I believed that was simply me getting older and clumsy. I actually didn’t join it to the MS. Now, wanting again, that in all probability was the rationale.

I didn’t notice my MS had transitioning from RRMS to SPMS for a very long time. I believe it was 2007, when my two boys and I moved right into a single-level condominium. By this time, I had a handicap-accessible van, and I used to be utilizing the facility chair extra. The whole lot was extra anxious for me. That’s when my physician informed me it was secondary progressive MS.

Emotionally, I felt like my MS was going ahead and I had no method of stopping it. I requested my docs if there was something I may do or if there have been any drugs for my type of MS. However I by no means had any luck with the relapsing-remitting medicine. All of them made me very sick. There’s nonetheless nothing that helps me.


Then I decided to bodily take cost of what I can do day by day. That has turn out to be my drugs.

I strive to participate in one thing day by day that may assist. I’m concerned with a wellness program that has exercise and social packages, in addition to lectures on issues like bladder and bowel issues, pain, meditation, and what it’s good to do to remain lively. I just about attend all of them.

I’ve tried adaptive yoga, swimming, core courses, and cardio courses, and even a kind of CrossFit. I take part in bicycle occasions, swimming occasions, and video games with the VA. I’ve snow skied and performed watersports.

I’ve additionally been a part of a help group for the Georgia chapter of the Nationwide MS Society for nearly 20 years. It’s particularly for African Individuals as a result of as a gaggle, typically they don’t settle for it at first. They do not wish to inform anyone. Our group stresses life-style adjustments and proudly owning it so you’ll be able to learn to stay with it.

I’m in my chair just about more often than not. I believe I’m getting slower. I’ve issues now with lymphedema, which is swelling, in my legs. I believe that’s due to the place I’m in more often than not, within the chair. However I am doing lively bodily and psychological issues to maintain me going.

For instance, I love to journey. Final 12 months once I turned 60, my sister and my son stunned me by giving me and my sister a visit to Paris. The entire 10 days, I used to be in a chair. However I used to be there. We went to the Eiffel Tower. We went to the Louvre. We went throughout.

If I’ve recommendation to share with others, it’s to embrace your MS as a result of it’s actually not going wherever. It’s a matter of constructing adjustments and asking your self, “How do I wish to stay?”



Joann Dickson-Smith, Atlanta.

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