Carnival of MS Bloggers #82

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

Love, Pride, Brains, Research, and Courage

4-Letter Words

by Kristie of X-Out MS

Today I had to do something that I never thought I would.  I sent my husband (at work) a 4-letter word message.  Just 4 letters. At a point where I didn't know what else to do - scared to no end - the world around me spinning faster than I could handle - and the only thing that popped into my head & that I was able to communicate was a dreadded 4 letter word. 

What was it?

Help.

That 4 letter word for some reason takes so much for me to ask for - and when I do, I feel almost shameful.  It's literally acknowledging that I can't do it on my own & I need someone else to assist me.

Super frustrating.

Then - my husband appeared at my car window - tapping to get my attention as I lay there with my eyes closed to the spinning world around me - and I was filled with the realization of another 4 letter word that I like so much better.

Love.

Run your own race

by Dan Digmann

I realize we aren’t all runners, but hear me out on this.

So the other night I was running on the indoor track at Central Michigan University’s Student Activity Center. It’s where I run in the winter. Not that I mind the cold outside, but it keeps my MS-numbed feet and me from running/slipping/falling on the ice and snow.

Nine laps make a mile. The middle lane of the three-lane track is intended for runners. And this time of year, the SAC track is packed with college coeds eager to sculpt their bodies into spring break shape.

This is my fifth winter running at the SAC, and I had an epiphany the other night when a runner blew past me at lightning-fast speed.

Here's a photo of me running at the SAC that was featured in a Morning Sun article last year.

In previous years I would have trashed talked him in my mind, calling him a showoff and wannabe and thinking how damn funny it’d be if he tripped and fell. Nothing hurt but his pride, but that’d be enough vindication for me.

But this year a kinder, gentler Dan had a more mature thought about this man who sprinted by me as though I was standing still. Rather than hate him, I truly saw myself in him. Because that was me … just two days earlier. I was the one blowing by everyone else.

Two days earlier I was speed training. Sprinting half a lap, jogging for one. Sprinting half a lap, jogging for one. I wasn’t showing off. Not entirely a wannabe. I was running my race. For me.

So many times with MS and life, it’s easy to compare myself to how and what other people are doing. Who would have thought a keeping-up-with-the-Joneses attitude could work its way into living with a chronic illness?

This is where I’m grateful I got into running because the lessons I’ve learned there have helped me to mentally move forward in my life with MS.

When I enter a race, the success of my race is not determined by how I finish overall or within my age group. Rather, how does it compare to my personal best time? My personal best time.

Oh sure, it’s great to place among other competitors. But even then, are we satisfied? One time several years ago I honestly placed first in my age group. Rather than fully celebrate first place, I downplayed it and made excuses (“But there were only two in my age group!”). I imagine I would have been more proud and perhaps even bragged about it had it’d been a personal best.

So I try my best to focus on what I’m doing in running and in life and compare it me. My dreams. My abilities. My circumstances. My goals. My personal best.

And how my personal best compares to everyone else is either excused by my disease – “Yeah, but I have MS” – or an added point of pride – “Yeah! AND I have MS.”

Know yourself, and run your race.

Taking My Brain Back from Multiple Sclerosis

by Diane J Standiford

In my new life at the assisted living/retirement community I had to move to (TWO YEARS AGO! WHERE DID THE TIME GO?), there rages within me the desire to build some new brain cells and paths up there. Many firsts and "never tried before"s have taken place. I hope my brain is growing a bit.

When we are babies, EVERY day is packed full of "never tried before"s, then with each passing year we try less and less, just a fact of being human. So, while I know I'll never catch up with that growth during my earliest years, I will do as much as I can.

Never ate peppers before. Never played Bridge. Never met so many people. Never wrote so much. Never read so much. Never typed so much. Never ate oatmeal, grits, Gouda cheese, asparagus, beef jerky, my stomach must be going crazy. Never spoke Swahili. Never learned so much about the Bible or Beverly Hills. (I thought Palm Springs was in Florida--all knowledge from Blogs I've followed.) Never used skin cream. Well, just never have done so many new things since I was a baby. And you know what? I think it is working. My brain says it is having a blast.

"You never___?!!" Yeah, I get that a lot. I'm 53 and doing it now.

Last week I played a great hand of Bridge. Got the cards and played them well. Nine diamonds, partner opened a spade, I countered a diamond, then back with 3NT. (Spade lead might have sunk me.) My dummy had 2 aces and west lead went low right to her! She also had two diamonds. Perfect. Yes, after over a year, I am beginning to be able to play Bridge.

Now, a game like this covers it all---being social with live people (not that any of you are dead, but we don't have to use as much of our brain with facebook friends or when reading a comment/blog, we basically rely on previous brain paths to decide if the words are sarcastic or serious or neither or both) forces the brain to interpret many body gestures and verbal cues. Shuffling the deck of cards (which I could not do at ALL 2 years ago, but now do it with a passing C), dealing them (again, took over a year) and holding 13 cards, all digging those brain paths.

Taking my brain back from multiple sclerosis is my new destiny. I didn't chose MS, but I can chose this. I am putting action behind the words, "Fight MS," because we really are at war here. When I read those who post "Fight MS" (in blogs and Face Book), they too often are charging straight into drugs or surgery, both which have yet to be without a doubt proven to help MS AT ALL! (That's right, I said it, again, some YouTube videos and people in an early stage, RRMS, or complete undocumented by the medical establishment/scientists stories of great turn-arounds, are not cutting it with me, *I* could have made those videos and told of such success myself after my diagnosis in 1990---and the only culprit was the natural and proven course of MS doing its thing, being healed by my own body in ways no, NO, medical researcher knows.)

"Pass." "One club." "One spade." "Pass." "Two no trump."
Taking back my brain one card at a time.

Now!

by Judy of Peace Be With You

Share the urgency.
That should be the call to arms
of all MSers.

What is evident:
time is not on our side.
Quite the opposite.

Running on ice floats.
Current research feels that way.
We need a cure now!

The following video was sent to me by one of the persons who worked on this mini-documentary.  It is presented by BYUtv.

Courage: Ryan Ren



Finally, I want to congratulate Marc Stecker, the Wheelchair Kamikaze, for being named the Best Patient Blog of 2010.  Way to go, my friend!!


This concludes the 82nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on March 3, 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, March 1, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #81

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

New Year, New Beginnings, and Brain Games

This is the Year of the Rabbit. Happy New Year!

Things That Make You Say, "Hmmm…"

from Matt of Multiple Sclerosis Daily News

I feel like for the last week I've been waking up from my diagnosis. It's kind of like waking up with a hangover and asking, "Now what did I do for the last six months?"

I think the biggest thing for me is realizing my mortality. There's going to be an end to things. The thing is, it's sort of a blessing. Knowing there's going to be an end but also having it be in the future gives us time to appreciate our experiences. I really do appreciate life so much more now.

I'm oddly less disturbed by my fading abilities now. Maybe because I've been able to read so many other people's stories. When I read a story about someone only being able to walk to the mailbox after 15 years I think, "Oh, you can still walk to the mailbox? Awesome!"

The other day I was at a meeting where a person with advanced MS rolled over to a counter and then stood up to get something. I thought to myself, "Oh, you can still stand? Awesome!"

I thought that being handicapped was going to be so much worse than that. I know that for some people it is, but even they seem relatively happy day to day. They still have passions and thoughts, they're literally still alive.

I don't know what I was thinking was going to happen. I mean, when I could barely put my socks on, that was scary. But really, potential sock problems are pretty easy to deal with compared to even current problems I have.

I don't know. I'm not saying it's great, but it just doesn't seem so scary anymore. It's a hard road, but at least it's a road.

9 Days!

from Dave at My life with Multiple Sclerosis

Well I met with my neuro yesterday and got some blood tests back. Sticking with the plan and getting visits to everyone prior to treatment!!!! I want base line with everyone.

I am not sure why but today a light bulb went off in my head. A few of you probably already had these thoughts. Neuros treating MS patients are really only a monitoring station/service. They can prescribe the "drugs", the pain pills, the depression pills, sleep aids, etc. etc and after that…there really is nothing. They can do more tests. They can see if things have changed. They can poke and prod you. Then, frankly after that there is absolutely nothing they can do…..They can say, “Keep your chin up, buckaroo” or “Let’s try a new drug” (if you take them)…..but in the end….there you are…nothing…..ZIP.

Off my soap box and back to my appointment. Overall it went very well. My blood tests were great except my B12 1900 is in the stratosphere. After that I listened to the "drugs" talk again. The "drug" conversation, which in no way was over bearing or anything, went pretty smooth and we moved on. Reviewed my changes in symptoms, talked about sleep apnea (creeping into my life), and of course had what I will call a weak neuro exam. As an example and I will leave this alone I didn't have to walk, take an eye test, or take my shoes off. Then the 800 pound gorilla came in the room.. I asked about his thoughts on CCSVI and guess what. What is that….:(? We then discussed it for a bit. We discussed the trials going on. He asked if I had tried getting into them. Of course I replied yes in fact I have and was denied. Then the next bomb..tic..toc… I am going for the treatment on the 11th!

To me and my wife's surprise this is where things took a great turn. My neuro said 3 HUGE things to us. One, I am not against learning from my patients, two if the interventional radiologist in NY needs any test done please let me know and three he would talk with some local IRs about CCSVI and see what they may or may not be doing. KUDOS! Then there was me and he wanted to be in the loop on what happens. I got his email address and will be forwarding him some information on CCSVI some testimonials and my information so far. This part could not have gone better for us.

So to close this out it was a worthwhile trip to the neuro. I now have a neurological resource willing to learn and grow along with me as I go on with my MS. Good stuff.

9 days……

Cognition Issues in MS/ CCSVI

from CCSVI {M}ammanannys{S}tory

I often said only half jokingly that of all the things MS had taken for me, I missed my mind most. I couldn’t remember where I put things, important dates or even what day of the week it was sometimes. Thoughts I wanted to express were not the words that came out of my mouth. During remissions, I did not get total relief from these problems. When I progressed to SPMS, I was afraid I might really lose my mind. I taught adult classes until my ability to concentrate was severely compromised. My neurologist ordered cognition therapy for me when I couldn’t repeat simple sentences word for word. I had to use materials that were more suited to an elementary student than a 50 something well educated woman. I was determined to do all I could to exercise my brain until somewhere, somehow, I could break through the cog fog that made me ashamed to be around my own family. I had a great deal of difficulty keyboarding but I knew there were free resources available online and I used them to get me through the last few years. If the angioplasty procedure did nothing else but improve my cognition, I would have been ever so grateful.

Many people with this condition have cognitive problems. It’s important to do whatever you can to stay sharp while you for your procedure. I have listed a few websites with free games and resources to help you. You might even enjoy playing some of them with your children, grandchildren or friends.

Some people are telling us that we cannot repair the damage already done to our brains. I agonized over that possibility before I had the procedure. Thankfully in this regard the naysayers are wrong. This is just another piece of the CCSVI puzzle where we can take control of our bodies and minds.

There are many resources other than these and I’m not advertising for anyone. These should all be free although some may have “upgrades” to pay for if you want all the bells and whistles, but they aren’t necessary at all.

www.lumosity.com
Lumosity trains your brain with 30 targeted brain games and exercises. The specialized brain training web application comes in both free and paid subscription versions. The library of games relate to speed, memory, attention, flexibility, and problem solving. The full suite of games is open to subscribers only, though those with a free account can play quite a few games across the board.

The games are well designed: the Birdwatching game works on your visual processing skills and concentration. Lumosity also has multiple courses designed by experts that bolster weak areas like weak memory, problem solving, math skills, and also brain related medical conditions like ADHD and TBI. Don’t forget to take their free Brain Grade test.

www.sharpbrains.com
Sharp Brains is actually a blog that keeps tabs on the brain fitness and cognitive health industry. So expect to find a lot of articles on brain health and the use of digital tools to enhance our mental muscles. The site also tries to raise social awareness on the importance of regularly exercising our mental faculties. One way is through the site’s newsletter. But if you are itching to put your brain through the paces head straight to the Teasers section. The large lineup of links to brain games, puzzles, and illusions could keep you occupied for some time.

www.braingle.com
Braingle is a community driven website that says it has the largest collection of brain teasers, riddles, logic problems, quizzes and mind puzzles on the web. 20,000 of them is a large number. Being a part of the community helps as enthusiastic members constantly keep the site updated with the freshest picks of games. As a free member, you can also subscribe to the daily teaser. Check out the Mentalrobics section for some cool brain workouts and articles on topics like stress management and memory.

www.smart-kit.com
At Smart-Kit, you get to cross train your brain on a variety of puzzles and games. All games are meant to be kid safe and designed to stimulate free thinking and problem solving. Some games like the Memory Match Game are easy while you might have to scratch your head when it comes to playing Take Something Literally. The Lateral Thinking games (which comes under the category marked – More) deserve a special mention here.

www.braintraining101.com
Games by their very nature call for a lot of co-ordination and mental skills. Take a game like Tetris or the classic Simon Says and you can ‘reverse engineer’ it as a game for brain exercise.


This concludes the 81st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 17, 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, February 15, 2011.

Thank you.

Comments for this post.