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!  

Facebook
Pinterest
LinkedIn
Email

Subscribe to Our Newsletter

Stay up to date with our events and get exclusive article content right to your inbox!

Latest Stories

Other Featured Articles

Categories

All Article in Current Issue

Subscribe to our Newsletter

Stay up to date with our events and get exclusive article content right to your inbox!