Dubuque: Sarah Guard - National Multiple Sclerosis Society

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Dubuque: Sarah Guard

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Sarah Guard

Why did you decide to participate in Walk MS?
I was diagnosed with MS in 2002. I'm walking because I (still) can!

What’s your favorite thing about Walk MS?
The community coming together to work towards a future free of MS.

How many years have you participated in the event?
My mom and I have walked the (Waukesha, WI) MS Walk together a few times, but I've never done one in Dubuque before. This year, I will be a walker AND a volunteer. (Well, and NOW the MS Walk Ambassador as well.)

Are you involved with the National MS Society in other ways besides Walk MS?
In June 2013, I took over the role of Volunteer Group Leader for a monthly MS Support group (MS Matters DUBUQUE) for those with no visible symptoms of Relapsing-Remitting MS and it has been a very rewarding experience. I'd like to believe that until there is a cure for MS, no matter what community I live in, there WILL be a MS Support Group because I will make it happen.

What are a few things you wish people understood about multiple sclerosis?
Multiple sclerosis is a disease of the central nervous system affecting the brain, optic nerves and spinal cord. Most people with MS are diagnosed between the ages of 20 and 50, affecting more than twice as many women as men. Symptoms of MS are unpredictable, vary from person to person, and from time to time in the same person. MS can cause: blurred vision, loss of balance, poor coordination, bladder/bowel problems, slurred speech, tremors, numbness, extreme fatigue, problems with concentration and memory, paralysis, blindness and more. These problems may be permanent or may come and go.

  • Many people with MS hear “I had no idea; You look so good!”  So many MS complications can’t be SEEN. (Blurred vision or blindness, sensory problems, pain, and problems with concentration and memory - to name a few.)
  • In MS, my body attacks itself. (Chewing on the myelin coating of nerves and disrupting the signals from my brain to body OR damaging the optic nerve, without my consent.)
  • Many people with MS are on disease-modifying therapies, often injections, to help SLOW the progression of the disease. (I'm on a daily injection, called Copaxone.)
  • HEAT is often "the ENEMY" for people with MS. (We run central air conditioning PLUS 2 window units in our house during hot, summer months to keep me cool.) I notice more problems with my body temperature is elevated.
  • It often feels like an electric shocking sensation running through my spine and limbs when I tip my head forward (chin-to-chest). This is called Lhermitte's sign or the barber chair phenomenon. I notice it mostly when I am HOT, stressed or tired.
  • It is difficult to describe "a lack of sensations" without using the words "it feels funny" or a description that "it feels similar to when your foot falls asleep".
  • An MS diagnosis is quite scary because there are SO MANY UNKNOWNS, but you have to play the hand that you were dealt and make the best of it!

What’s the most important, meaningful or memorable connection you have made since being diagnosed with MS or having someone close to you diagnosed?
MOST IMPORTANT - I'd say was being able to offer support for my oldest cousin when she was diagnosed with MS in 2012. (Our maternal great-uncle had passed away in 1969 from an 11-year-battle with MS.)

MOST MEANINGFUL - I was saddened (a few months after discovering a MS Support group in my community) when the group creator/leader announced that her one-year-commitment was up. It was SO IMPORTANT to keep this group in tact because it was the first time I had been able to talk to people who "GET" what it is like to live with MS. Although our disease is different for every one of us, we all share the same diagnosis and same fears. We're there to bolster and support each other. It is so useful, especially for those who are newer to this diagnosis to hear from people who have had similar situations AND it is really comforting to see that this diagnosis does NOT guarantee a life of severe disability. I stepped up to the plate and took over the role of group leader in June 2013; it has been VERY rewarding!

MOST MEMORABLE - In June 2013, our family went to Galena, IL to attend a hot air balloon race. While sitting on a picnic blanket, wearing a MS Walk tshirt, the woman on the blanket next to me stated "I couldn't help, but to notice your shirt. Do YOU know someone with MS or do YOU have MS?" Soon, I learned that she was one week away from meeting with a neurologist to discuss MRI results and a suspected diagnosis of MS and she really NEEDED someone to talk to. I was more than happy to be there for this complete stranger.

What makes you a great Walk MS Ambassador?
My support group endorsed me to represent "US" after having taken over the leadership role last June and for promoting MS Awareness Week in March. I've got a passion to work towards a cure; I want to (be able to) dance with my two sons at their weddings someday.

What makes your MS story unique?
I'm really starting to believe that I was LUCKY to be diagnosed because {...knock on wood...} I've had such a mild case of MS that could easily have been missed, had I not listened to my body. Around the time I was ready to go to the doctor for my three weeks of numb toes, it went away. It wasn't until I held a lit match, watching the flame get to my fingertips - WITHOUT PAIN - that I knew that SOMETHING was wrong. (A spinal tap and MRI confirmed my diagnosis in 2002.) I'm pleased to recently learn that I have NO NEW LESIONS on my brain since 2010 and prior lesions have gotten smaller or disappeared; this is all the PROOF I need to give myself a daily injection and KNOW that it is doing its job.  I can only assume that my spinal cord looks equally as happy as my brain did.

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Sarah Guard

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