Multiple Sclerosis Awareness Week

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!  

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