Thursday, September 15, 2011

Carnival of MS Bloggers #97

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Sleeping Legs, MS Faces and Awareness, RX Yoga

by Karen of Meandering...One moment please

Photo courtesy of Hubbers

One of the best things about vacationing at the lake is kayaking and canoeing. I have always enjoyed both. This year was no exception! There is nothing quite like gliding along the water silently, taking in all that nature has to offer.

As my mobility is somewhat stilted on land now, it was exhilarating to travel quickly across the water so effortlessly. I once again felt in control of how my body moves. I felt totally able bodied, and free from the limitations that disease has imposed on me.

I zipped around the bay and paddled out on the big lake for about an hour. As I headed back to the cottage, I noticed that I no longer felt any pain in my lower back or legs. The transverse myelitis plagues me with a considerable amount of pain most days. Wow, kayaking and nature surely is the best medicine I thought!

As I beached the kayak on the rocky shore, the excitement of being pain free slowly turned to concern, when I realised that I couldn't feel the rocky ground through the underside of the boat. Not tending to be an alarmist, I continued to maneuver the kayak to a stable resting position so I could climb out.

If you've ever been in a kayak, you know that the only way out, is to pull yourself up, back, and out from the tiny opening. It usually works pretty good by using your legs to push against the front of the boat, as you lever yourself up with your arms. I kept trying to hoist myself from the confines of the small space where my legs rested. It wasn't working!

I couldn't get out of the boat! I couldn't get out because I couldn't move my legs at all, nor could I feel them! There was no one down at the dock, and the cottage is a considerable way up the hill, so calling out for help was useless, because I wouldn't be heard. It was about at this point that the panic set in.

There I was, stuck in a little pink kayak, numb from the waist down, with arms flailing, while making bizarre squawking noises. Thankfully the scene was eventually noticed by Hubbers, who was on the upper deck sorting out his fishing tackle. I think the squawking noise was what caught his attention.

He managed to haul me out of the little pink prison, and settled me on the sand, where I laid like a beached whale. Convinced that my legs had just "fallen asleep", I protested the urgent suggestions that we should take a trip to the nearest hospital, (which wasn't that near).

After a while laying flat on my back, searing pain started shooting from my toes up to my hips. Well, this was surely a good sign! Pain equals feeling, and feeling equals not paralyzed. I regained almost full feeling in both legs, (along with full pain) over the course of the next few hours.

The doc said that the angle of my legs in the kayak, put pressure on the spinal cord, smack dab in the area of the cord that has already been damaged by the TM. That pressure in turn compressed the cord further and caused the temporary paralysis.

There you have it... I knew my legs just "fell asleep"!

To be on the safe side, I have scratched kayaking off the list of fun things to do up at the cottage!

by Laura of Inside MyStory

Do you grow weary of hearing the inspirational tales of people who have MS but still conquer the world?  Do you have trouble identifying with the athlete who just ran, swam or biked across the world in the face of MS or the person who climbs into the ring with a raging bull and emerges with the championship belt? The list of motivational speakers includes a wide variety of talents and skills and they mean well, but it can be difficult, if not impossible to relate to their message.

It’s a mystery why this disease affects all of us differently and I don’t begrudge those people who appear to have benign Multiple Sclerosis – that mild disease that may not even need to be treated. Kudos to them being able to continue living life to its fullest, setting lofty goals and working hard to achieve them and I certainly don’t want to take away from their successes, but I have trouble relating to these super-patients.   Their normal of living with Multiple Sclerosis doesn’t compare to the normal of the numerous people I know who have this same disease.

The best human interest stories and inspirational tales for me don’t come from the globe-trotting, super achieving people with MS.  The real people living day in and day out with the struggles make the most inspirational witnesses to the human condition of living with Multiple Sclerosis.

Let me hear the experiences of the primary progressive MS patient who regularly lobbies on Capitol Hill in Washington, DC, to keep awareness of our needs in the limelight for legislators.  Now this is someone I should wish to emulate.

How about the single mom whose partner decided to leave rather than stay in the trenches with Multiple Sclerosis?  Recently I heard that 70% of people living with MS end up divorced; how do those people who are left alone, often with children to raise, manage?  These people only have themselves to rely on for their daily needs. There has to be a tale or two about their highs and lows that would inspire me to not give in to this monstrous disease and its unfortunate side effects.

Or maybe I can learn important lessons from the person forced onto disability from their dream profession, because MS doesn’t discriminate and strikes people from all walks of life.  What does it take to maneuver the maze of assistance programs when you lose all your assets and your identity to this disease?

There are as many stories as there are people living with MS; they may not all have happy endings, but there are lessons to be learned from all. Life with MS is not a happy fairy tale, but more like one of those tales from the Brothers Grimm, where life is often cruel. Give me the real life stories of emerging from the dark side of MS with new direction and a sense of purpose.

by Judy of Peace Be With You

We MS bloggers
comprise a small percentage
of those who are ill.

Are we a voice
for largely silent people
who need to be heard?

What is our role?
Just simple self expression?
Must we advocate?

by Diane J Standiford of A Stellarlife

As I have aged (like fine wine, uh-hem), my need to make people aware of multiple sclerosis has increased. Funny, but I expected the opposite. As my own knowledge and experience grew, MS became a bigger unknown to my worlds.

There was my work world. I was only in my thirties and full of energy! I started a disability group for employees (not ONE member had MS). I explained about MS while riding my scooter to city council meetings, to jury duty, on buses, in Starbuck's across Seattle! Then I moved to an enclosed community in gay-Seattle and began my awareness quest there. My struggle to get around with my cane was epic, and it led to many discussions about MS. I fought to make the public restrooms of my mixed retail apartment building accessible, I wrote letters to the theater chain asking for isle rails, I met with city sidewalk engineers to fix broken ramps and install new ones where needed. MS, MS, MS

By my fifties I moved to a retirement community, average age 85, and my energy for all this awareness making has run flat. Not a day goes by when eyes do not look at me in my power chair and wonder, "WHY is SHE here? In THAT?" I have considered a hand-out, the book with one of my short stories about MS located in the library here apparently is not sufficient. (Though the first one I donated was stolen, causing a bit of a brouhaha, so some residents actually wanted to read it...)

Shocking to me how many of this age group are so unfamiliar with MS. Keeps me wondering who is doing any MS Awareness for us? A once a year walk just isn't enough, and what does that do? It shows people laughing, walking, maybe a power chair here and there. But mostly a party atmosphere---how are people learning about MS from these events? (Sponsored quite often my at least one drug company.) I remember the one I went to. Finding transportation there was a joke, and the volunteers tossed me a T-shirt, "You can put this on over your shirt."

When I said I couldn't lift my arms up, they looked at me like I was an alien. Good grief. I ended up leaving after they couldn't find a place for me to sit and were having so much fun laughing among themselves about a movie they had seen...well, I just zoomed as fast as I could in hopes of catching the ne'er-do-well Access Van service before it left.

So, it seems I will be spending the rest of my life supplying MS Awareness. Fifty years ago, I am sure some other woman with MS spent her life doing the same thing. Though, when I was five years old I was hearing about MS from TV ads, magazine ads, radio, "MS. The crippling disease of young adults." A few more of those ads would make my task a lot easier.

from Melissa's Madness

That was my Facebook status yesterday. Was I really jumping around the office with my neurologist with fists in the air? Actually the very thought of it almost makes me drop to the floor hysterically laughing. All kidding aside, my routine appointment went well. I am set up for an EEG and MRI. He did say that my strength is good, but after watching me walk, that my balance is a little shaky (which now that I think about it, I did notice). I asked him if he could recommend anything specific to help with that. He said going for walks (duh) and doing yoga-esque balance exercises. Here's the thing. Years ago I attempted yoga at home and didn't like it. Now, like I said, this was years ago. Pre-Alison...Pre-MS diagnosis. I think at that time I maybe got bored with it, but to be honest with you, I only did it for a week at most. With my mind-set nowadays, my doctor is recommending it, so I'll absolutely give it another shot. At this point, I'm just glad I didn't get another prescription written out for me. I stopped at Target yesterday (shocker) and purchased Jillian Michaels: Yoga Meltdown, so we'll give it a go. He also wants me to continue the strength training I have already been doing. time. Fingers crossed this goes well.

UPDATE 11:50 AM: WOW!!! That was so much different then I remembered!!! I really liked it! Alison just told me that I'm "sweaty and gross" so it must have been a good workout. ;)

This concludes the 97th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 29, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 27, 2011.

Thank you.


  1. Thank you, Lisa, for including my poem among such awesome company.

  2. Ditto, nice to be included with such great bloggers. Thanks!