The members of the multiple sclerosis (MS) community on PatientsLikeMe are very open when it comes to sharing about their journey, and shep0454 (aka Shep) is no exception. He recently spoke with us about his life with MS, and he pulled no punches when talking about his emotions after being diagnosed, the wonderful people he’s met on PatientsLikeMe and the difficulties in traveling and vacationing with MS. Read on to see his personal journey (and his great sense of humor).
Hi Shep! Tell us a little about yourself and what you’re currently up to.
I’m currently up to about FOUR foot TEN since I’m now a member of the Power Chair Guild full time!
“A little about myself….” huh!?!?!?! I have been on my MS journey since I was a little boy running into the side of Cadillacs while waiting for the school bus…NO!!!! really!!!
Relapsed and remitted with balance and falling and gran mal and absent seizures and impaired comprehension and blurry vision and heat sensitivity and unexplained lapses of chronic fatigue for about fifty years with no confirmed diagnosis. After a heart attack about seven years ago, I began to proactively seek an answer to these enigmas that all of a sudden wouldn’t go ‘bye-bye’ anymore. About four years ago, I finally received a confirmed MS diagnosis, which has been upgraded to secondary progressive.
OH!! Joy!!! OH!! Rapture!!!…just saying!!!
You were diagnosed with MS about three years ago – what was that experience like?
“’….three years ago”….’ – ….give or take an hour here or there, I’m pretty sure it was Nov. 4th, 2010, at about 2:23pm…and to be honest with you, finally knowing what the HELL I had been over compensating most of my life with all those and several more strangely beguiling symptoms, it was pretty damn WONDERFUL to finally know!!!
When you’ve been through more doctors and specialists in a lifetime than could staff a hospital the size of the MAYO (hold the mustard) Clinic, finally…even with no known cause or cure or even an effective treatment since the diagnosis came so late in life…it was truly a blessing to not have to doubt my sanity and have an answer to the black hole that was the mystery of most of my life…how’s that for drama!!!?!
What are your favorite tools to use on PatientsLikeMe to track your health, and what have they helped you learn about your MS journey?
Just today, another poster on a thread in the MS forum made this declaration about ‘tools on PatientsLikeMe’ and I paraphrase:
‘Out of other MS support/social sites, only PatientsLikeMe offers me:
…a place to track my doctor appointments…
…my treatment history…
…a way to record relapses, related symptoms…
…and their severity and duration…
…charts to reflect not only the ‘physcial’ disabilities associated with MS but also ‘Quality of Life’ and ’emotional & phsycological affects…
…the feeling that I am participating in offering hope to future MS generations by supplying these statistics for research and offering insight into the medical field of the realities of living with MS…
…the ability to blog and reach out to other MS patients, not only for my own needs…
…but to try and support them when I’m able…’
I agree…just saying!
You’re very active in the PatientsLikeMe MS community. Can you share a little about the connections and friendships you’ve made in the MS forum?
My goodness, sir!!!! I’m a Southern gentleman, and we’ens never talk about such intimacies…..!!! But, also in the same regard of being from the south and knowing that everyone loves good gossip; here goes:
I’ve met a MS patient who is Afro-American and drawn strength from her journey of not just her dual diagnosis of MS and cancer; but as a younger woman, sitting at her mother’s bedside and watching her die from the elder woman’s own battle with the typical aggressive type of MS that people of color have to bear………
…or how about, the lady that I came to know vicariously on one of the MS threads who shared how her personal journey was slowly robbing her of anything that was acceptable in her ideal of a ‘quality of life.’ Even though she reached out to mentor college students and tried her best to stay as active as her variation of this chronic illness would allow….this dear sweet and compassionate ‘friend’ took her own life!
I will never know that kind of courage…just saying!
I have been privileged to know many parents who found their own MS experience to become more and more debilitating while still being super mom and/or dad…
…and soccer transport & scout leader….
…and PTA supporter…
…and church/synagogue participant…
…and, when the significant other didn’t run out the back door screaming that ‘they didn’t sign up for living with a crippled, spouse or partner!”
Constantly second guessing whether they’re doing all they can do to provide the best effort…especially for their children.
Feeling guilty about whether they’re passing some kind of DNA or gene to their offspring that will provide them this life-altering disease and all the related challenges.
Pushing themselves so hard some days that they can’t tell the difference from true physical exhaustion and the terrible impact of the MS fatigue that is unique to our specific disorder.
These good folk, with children or without, not realizing that our independent journeys with MS and its disabilities is a rare and just as an unique opportunity to teach our childen…
…our spouses…
…our extended families…
…our neighbors…
…our friends…
…and the public we encounter while living as best we can, by example of how to rise above our personal challenges and teach any who are paying attention how to overcome and persevere with grace and dignity!
Our gift to them…if we choose to accept it as such!
We heard you recently took a trip to the Dollywood/Gatlinburg area – what was it like? How did it compare to traveling before your MS diagnosis?
‘Dullywood’….really!?!?!?! I went a year ago, renting one of their park scooters…had to pay admission to get in…and then rental fees to use an assistive device in order to actually move around the venues…I was then asked to pay EXTRA for a canopy for the scooter since it was raining like it was an Asian monsoon….or something-something!!!!
Gatlinburg has public transit/trolleys that are ADA accessible for wheel and power chairs….and it proudly proclaims this public service…as it should!
“How was this past week’s vacation to this resort area different than before my diagnosis?!?!?!?!?!”
Well, during the relapse/remitting part of my fifty odd years, I was fairly able to drive my butt to Gatlinburg by myself…
…check into a motel room on the third floor and only be concerned if there was an elevator because I felt lazier than normal. Back then, I made sure I brought enough ‘safe sex’ sundries to ensure that I didn’t get some kind of auto-immune disease. Now, my MS provides the ‘safest’ of all safe sex techniques – it has robbed me of any sensation or ability that would be required for basic participation in such behaviors.
I now pack enough extra pants for each day of the trip since now I have to be prepared for little moments of incontinence that makes every day a new adventure for learning how not to be embarrassed as HELL because I didn’t make it to the toilet. I didn’t usually forget why I went into a store or restaurant or down an alley and sit there in my power chair going ‘duuuuhhhh!’ It also didn’t matter to me one way or the other if the public transportation and/or handicapped parking was carefully marked or not.
…nope!!! I was most often pissed off because I couldn’t find anything close to the entrance like all these ‘disabled’ people got away with…. My favorite: NOT having to deal with whether the public rest rooms handicap booth is big enough for me to navigate the power chair around without taking out a partition or backing into plumbing….
…and I guess the biggest difference is that I didn’t need an entourage…
…that would make a rock band jealous …
…just to be able to get there…
…and actually need the bellstaff to unload the SUV for a tip…
…and provide basic assistance with bathing and food prep… …depending on the foresight of the architect and designers as to just how accessible their condo truly is…
…and lastly, finding the good grace and manners to not slap the crap out of some rude a**hole who desperately needs to share how having to deal with my presence in my power chair and needing all of these necessary considerations for be able to be there in our conjoined public space is just too much to bear!!!
….just saying!
Thanks for this wonderful opportunity to explain my MS journey to anyone who would care to learn about what this particular chronic illness has provided me for a life of ‘shit and giggles’….just saying!
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