Last Thursday evening, January 19, 2017, kicked off our very first MS Support Group* meeting for the Central Kentucky area! This monumental support effort has been in the works for a while, and a special thanks to Dana Galloway, our MS Coordinator, and Emily Wooldridge, fellow MS patient, for getting the ball rolling for MS warriors and their families.
What better way to appreciate those two gals and the brave souls who attended than to tell you about it in hopes that you, too, can come join us in the future!
(My administrative skills peek out here.)
The meeting room gathered MS patients (both genders) and their family members despite the crazy Lexington/Nicholasville Road, close-of-business-day traffic and congestion. The cool, soggy, misty rain added excitement in getting to the Central Baptist Hospital complex, newly renamed Baptist Health Lexington, on time, bad-hair-day hair intact, and nervous self focused and present. After figuring out the best place to park (see graphic above) and finding our way to the lower level of the 1720 Building Education Center, we followed the arrowed signs to the meeting room where others had already arrived and commenced socializing.
I signed myself and my husband in on the clipboard and created our self-adhesive nametags.
His read “Mark Taylor, ‘I’m with her.’ >>>>>” Mine read “Lori Taylor.” 🙂
Asserting courage despite my introverted anxiety, we chose two seats in the front row. Well, actually, I chose the seats while Mark confirmed the location of the nearest restroom.
Why is it that no one likes to sit in the front row anyway?
As long as I don’t have to speak in front of the crowd, I personally can see better, hear better, and be closer to the snack table! Haha!
So what happens first after everyone gets a snack, finds a seat, and we begin? We do introductions.
Of course, we do introductions! I thought I might have to tell someone my name, but honestly, I had expected a smaller crowd.
No one wanted to go first, so our co-leader, Emily, began telling us about herself and her interest in support efforts. She explained the name of our group, “Learn to Fly,” inspired by the mighty geese, their astonishing flying “v,” and the amazing way they help take care of one another.
By the way, she has incredible spunk and if she had any jitters, she hid it well.
When she told us a little bit of her story and then looked around for someone to begin, a hush fell over the room like church on Sunday (if you’re a certain denomination, of course, like me. Wink. Wink.) My patience had paid off, the support group was established and meeting, so the least I could do was to help break the ice.
I stand up, tell my name, where I’m from, who I’m with, how many kids I have, when I was diagnosed with MS, and was then supposed to tell something interesting about myself. I confess my gold star nerd status, and then…
I don’t even remember what I said after that. Hahaha! I do remember people chuckling at me and Dana revealing that I was the secret newsletter planner/editor for our area MS Newsletter. After I finished my little shpill, I sat back down and listened to what fellow MSers had to say.
For some, I listened to what they didn’t say.
In short, the following observations stuck out to me:
- There were 15 MS patients (1 male, 14 female.)
- At least 5 were diagnosed within the last year, and 6 were diagnosed or had symptoms for more than 20 years.
- Most suffer from Relapsing-Remitting Multiple Sclerosis (which is the type that plagues me.)
- More than half of participants seek Tysabri as their choice therapy; some take Copaxone; some, Tecfidera (which is currently the therapy I undergo;) a few, Lemtrada, while others take alternate medications, supplements, and at least one or two that do not currently undergo any drug therapy.
- Symptoms that seem to be common amongst the group were vision disturbances, numbness and tingling, fatigue, depression, heat sensitivity, spasticity, lack of concentration and focus, brain fog, and either a struggle with or loss of use of different parts of the body. I’m sure there were more that escapes my memory. I am an MSer, after all. Wink. Wink.
Listening to these other MS patients tell their stories, my own story felt a little more validated and legit. Other people felt like me.
Maybe I’m not an alien after all. The weirdness that is Multiple Sclerosis does exist, and I’m not the only one contending with its for-real crap.
I think it’s easy yet unintentional for family and friends to forget a person with MS (or any chronic illness) pushes through extra struggles to just make the day. At times, there is no push at all. The struggles are there. The day plays out whether one is ready face it or not.
The remarkable similarities regarding MS were not just symptoms and indications of suffering.
We were alike in our convictions and aspirations of overcoming.
Not everyone that day, or all days feels like putting up their fists to fight off the monsters. But hearing another person talk about the ways they cope and get through their hardships can be enough to at least hunt up the boxing gloves.
The following good, sound advice, tips, and what things work for others reverberated in the discussion until they bounced and landed on me like glue:
- Trust Dr. Winkley. Everyone loves Winkley!
- Make sure your reading materials and/or research information is Dana-approved.
- Rely on your support system–you know who they are. It’s times like these when true colors shine bright for all to see. If a dear one flakes out or avoids you as if you are contagious, mourn their loss, not yours.
- Stay positive! It’s hard some days and when it is, refer to #3.
- Try to get as much exercise as possible. Keeping the body active seems to be a common effect that produces excellent outcomes.
- Take your medication/therapy. Don’t go off of it even if you think you are doing fine and do not need it. Just trust your fellow MSers on this one.
And that is where I close this post and refer back to the name of the support group, “Learn to Fly.” Geese are strong. They are stronger together.