BY MICHAEL JOHNSON
March 13th-19th is “Multiple Sclerosis (MS) Awareness Week.” As noted on the National MS Society’s website (nationalmssociety.org), Multiple Sclerosis (MS) involves an immune-mediated process in which an abnormal response of the body’s immune system is directed against the central nervous system (CNS).
For this article, I wanted to bring a personal perspective to the disease. I interviewed three people who live valiantly with MS. Two are family members—my Aunt Peggy and my sister, Julie. The third is a friend and well- known local celebrity—Jeff “Smitty” Smith of the iconic Smitty’s Notes.
Forsyth Family: When were you diagnosed and what was your path from the initial concern to the MS diagnosis?
Julie: I was diagnosed in May of 2017. I remember I felt very dizzy. I was attending an event at a retail shop and I remember steadying myself by grabbing a hold of a clothing rack. I am a trained nurse and began the torturous process of self-diagnosis.
A follow up visit to a neurologist led me to getting a CAT scan and it was confirmed that I had lesions on my brain, which is a primary indicator of MS.
Peggy: My diagnosis was finalized in 2001. I recall that I was walking and stumbling a lot. And I started to become concerned about how deeply fatigued I was getting. A neurologist confirmed that I had MS.
Smitty: In 2005, I was diagnosed by a neurologist as having CIDP (Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), which is a rare type of autoimmune disorder very similar to MS.
At a local seminar in 2009, I remember my vision was blurry and I didn’t feel myself. I called my father to tell him I thought I should check myself into the hospital. When I ultimately went to WFUBMC, they ran tests and conducted an MRI. The doctor told me that the presence of lesions on my brain indicated I had MS.
What were your first impressions after being diagnosed?
Julie: Honestly, I was very angry. I felt bad for my kids. I didn’t want them to be burdened with a mom who had this. But I shifted into a mindset of acceptance fairly quickly after that.
Peggy: I was very fearful. I just kept thinking that it wasn’t fair to be dealt this hand. I was frustrated once I found out that I had been given the real medicine in a blind trial test, but that future treatments would not be covered by Medicare.
Smitty: After I was diagnosed, I told myself that I would allow a self-pity party for one month, and that was it. I then had to get acclimated to using a walker for an entire year and during the summer it was brutally hot. I resigned to switching to a wheelchair to get some relief. I wondered if I could still work at my job. Would it be feasible even to do Smitty’s Notes?
What have been your biggest challenges?
Julie: It can be easy to let depression sink in. Physically, I seem to manage pretty well! I just don’t overdo it. There are profound benefits to “household pet therapy”! I am a true believer in the power of pets.
Peggy: I have found that doing the little things is my biggest challenge. I cannot walk without a walker with brakes. And my biggest hurdle is getting over the fact that I cannot drive myself any longer. It can bring about a sense of isolation.
Smitty: I faced the fact I couldn’t do what I did before. I couldn’t ride a bike or go out and about around town. Mentally, I was okay. The best advice I ever got was “put the old Jeff in a box and bring out a new Jeff.”
In what ways have you learned to adapt your lifestyle?
Julie: I manage time to get enough rest. I realize my body works sometimes in ‘elderly’ mode and I make adjustments.
Peggy: I work a lot mentally on adapting properly. There are certainly cognitive issues as a result of my condition, and I have had to transition accordingly. I used to be able to go freely to my Mary Kay Cosmetic seminars and I found that I was no longer able to participate as I once did.
Smitty: Personally, I recognize my limits. I can tell you that my workplace helped me. They embraced it. They installed two automated security doors where I could just use my keycard pass to have the doors open. My employer was terrific.
Have any holistic approaches offered any relief?
Julie: I love massage and pilates!
Peggy: Massages do help. There are some seated exercises I do to alleviate some problematic symptoms.
Smitty: Up until the onset of COVID, I got weekly massages. Those massages helped to loosen the muscles up. And I find that taking Vitamins B and D is critical.
What is something positive that has come from you living with MS?
Julie: I get permission to sleep a lot! (laughs). MS can certainly pump up the gratitude for life. I actually rode my bike in the MS 150 mile fundraiser from Houston to Austin in 2018. I came in dead last, but I am proud!
Peggy: I have been able to tell myself that MS wasn’t my fault. I get a lot out of virtual online meetings with a MS support group.
Smitty: I find that MS has slowed me down in a good way. I now see things in an empathetic light. Not to mention, using the wheelchair has given me a whole new view of the things on the lower shelves at the grocery store! (laughs) I would implore people with MS not to be afraid to ask for help!
