I founded the Carnival of MS Bloggers in 2007 to connect the growing MS Blogging Community. My vision was to become the central hub where bloggers could find each other and to feature a collection of independent patient voices.

As larger MS organizations have also begun to feature patient voices on their own websites in recent years, the Carnival of MS Bloggers is no longer the single driving force in serving this wonderful community. For that we should all be grateful.

Thank you for continuing to support me in this one-person labor of love over the years. As of now, I will be taking a break from hosting the Carnival of MS Bloggers.

Please feel free to continue to email me to alert me to new MS blogs to add to the comprehensive MS Blogging Community index.

Lisa Emrich

MS Bloggers A-D

MS Bloggers E-L

MS Bloggers M

MS Bloggers N-S

MS Bloggers T-Z

MS Caregivers and Loved Ones


Thursday, January 28, 2010

Carnival of MS Bloggers #54

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

Living a Normal MS Life and Cognitive Reserve

PE Class, Wildwood Flower, and Buttons
by Kmilyun at Bifurcate in the Road

Augh you might be asking what in the world do adaptive PE, flowers, and buttons have in common. The short answer is me LOL.

Hang on to the edge of your chairs now because this is going to be one of those real exciting blog posts that you surly spent hours awaiting!

First off I could take paragraphs to go into all the things I can no longer do. Or pontificating on all the stuff you can do and I can not or things I can do and you can not. Blah blah blah it is all lip service no? (in this case keyboard hitting).

Seriously, I can not be the only person with MS that finds it highly annoying to read about some great and wonderful accomplishment someone with MS has managed. That really does not cheer me up or make me strive to reach for the the stars. And it has the rebound effect (or is it affect?) of the inevitable comments from family – gee they climbed a mountain with MS so what is the big deal about not wanting to go camping where there is no running water and the closest restroom is 10 campsites down. Obviously you should be able to do that it is not like climbing a mountain you know!

Then again should I really feel bad and guilty or be berated because I can still drive, or make it up the stairs? Is not my personal perspective of suffering good enough. I somehow do not qualify? I have come around to the conclusion/belief that each and every person who overcomes any disability whether judged big or small is busy climbing their own mountains. And these mountains can be akin to pole vaulting over mouse turds to raising a truck over ones head. They all count.

And the above being the lead in to why I really like my adaptive PE class. It is a diverse group that gathers four days a week for an hour in the short bus trailer. I have yet to hear, see, or sense from anyone in the class that someone is better or worse or crazier or sicker than someone else. It is what it is. People who can’t talk use those boxes to communicate, the blind, the wheelchair bound, the mentally disabled, the goofs like me – we all just – well are.

It is the first place I have been with people who are not close friends that when my brain has gone south and it appears I took a stupid pill where I did not feel stupid.

Moving on without a segue into the next topic – I have decided to learn to play wildwood flower on the dulcimer. I have listened to a few renditions of the song. My favorite is June Carters last recording of it. I think I have figured out the notes – well a few might be missing – but I will see. It is not easy to find TAB notation for the old style noter and drone playing. The ones I have found on the net are for chording and finger picking. Big attempt for me as I still have problems with Go Tell Aunt Rhodie LOL But I am gonna give it a try.

Rush hour traffic here in Sacramento is the pits. I really dislike driving in it anymore. But the shop where the Luthier can put the strap buttons on my dulcimers does not even get in till 4:30pm. I am getting smarter here now so give some credit, I know that it would be a bad idea for me to install them even though I have done many over the years on guitars. So I put on my brave face, kissed the dogs goodbye and ventured out onto the evil freeway – at the start of rush hour(s).

I did not get lost, I did not crash, and on the way back home in the peal of the rush I turned on my truck radio. Yes, I made it home and listened to some tunes on the way. Not really that distracting because top speed was about 20 for most of the trip. The dogs were really impressed with the strap buttons and I suspect the fact that I made it home before doggy dinner time had a lot to do with that.

Now I can hold and play my dulcimers without them shooting out off my lap like rockets headed for a crash landing!
So today I just was, I made a goal, and I did something normal.

Cognitive Reserve Hypothesis
by Shauna at Bugs, Bikes, Brains

We all know that neurological disease can lead to cognitive impairment along with possible physical impairment. For many of us with MS, we may have noticed lapses in memory, ability to find the right word (tip of the tongue syndrome), unusual moodiness. Some of these things are part of the aging process, sometimes related to stress and/or hormones, and sometimes they are related to the disease.

How do we hold off these impairments? By the time we realize they exist, it may be too late as damage may have already been done. That's the scary part. However, we also know that the human brain is amazingly plastic and that we continue to learn things as we age, so continued brain stimulation by way of physical and mental exercise may help.

There is a hypothesis called the cognitive reserve hypothesis. It suggests that "enrichment protects against neurocognitive decline secondarily to disease" (from Wikipedia). "Lifetime intellectual enrichment (estimated with education or vocabulary knowledge) lessens the negative impact of brain disease on cognition, such that people with greater enrichment are able to withstand more severe neuropathology before suffering cognitive impairment or dementia." This is from the latest study of this hypothesis.

You can think of it this way. Two people contract a cold. One person is a health nut, eats right, exercises every day, gets the appropriate amount of sleep. The other person is a junk food junkie potato couch. The health nut has a good body reserve to fight off the cold within two days. The junkie, though, has no reserve and suffers for a week. The health nut has an "enrichment" of his health, the junkie doesn't.

The cognitive reserve hypothesis doesn't state that enrichment protects you from cognitive impairment; it simply lessens the negative impact. The two people I mentioned above both caught a cold, but one was impacted less than the other.
Cool, eh? I thought so. And it's related to the current study I'm in, the one about cognitive impairment and brain connectivity. You can bet your boots I'll be watching for more studies on this topic.

Let's face it. We have MS. We know it's neurological and degenerative, affecting physical and cognitive abilities. Some of the damage we have little control over. But there are also some aspects over which we do have control. We can get on a disease modifying treatment as soon as possible. We can eat right, reduce stress, get the proper amount of sleep and rest, stimulate our minds and exercise smart.

I have talked about exercising smart before but will sum it up for new readers or to prod those of you who may have forgotten. Stimulate your mind: do puzzles, but do different ones every day. Mix 'em up. The brain is stimulated by new things. You can do a Sudoku one day, a crossword the next, maybe some logic puzzles the day after, but mix it up. By doing the same ones every day, you become good at those kinds of puzzles, but the brain isn't doing anything new, so doesn't get the same stimulation.

Exercising smart is a pretty easy one. If you go for walks or hikes or whatever and don't have an Ipod or MP3 player, try doing multiplication tables as you exercise, compose a letter in your mind, try to recall a favourite recipe from your childhood. If you have a portable media player, listen to an audiobook, or Spanish lessons, or music that you normally wouldn't listen to. You can download free stuff from the library. Take different routes when you walk or hike. Remember, the point is to give your brain something new to work on. In other words, exercise your mind and body at the same time.

Another way to think of it is like this: your brain looks for patterns, whether it's music or words or what you see. These patterns are ingrained in our brain after years, kind of like the beaten down paths from base to base on a ball field. your brain will take the path of least resistance. If you expose yourself to something new and different, your brain first goes "What?" and then starts to search for familiar patterns. Not finding any, it gets down to the business of processing the information, beginning to lay down a new path. That is stimulation. And it's a good thing.


This concludes the 54th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 11, 2010. 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 9, 2010.

Thank you.
Comments for this post.

Friday, January 15, 2010

Carnival of MS Bloggers #53

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

Happy New Year!!

Here we are in 2010. Wow. This will be the 3rd year in the Carnival of MS Bloggers' existence. Can you believe it?! We've had two years of brilliant writing and sharing by MSers of the blogosphere. Thank you so much for reading and for supporting each other with such open arms and hearts. MSers truly rock!

What The H***?
by Judy at Peace Be With You

What the H*** happened
to my life, the one I planned?
It’s sure not this one.

I’m used to making
lemonade out of lemons,
but this is too much.

There is gold here, yes,
but I tire of panning
and getting pebbles.

If MS Is A Gift, Where Do I Go To Return It?
by Zoomdoggies at Howling at the Moon

My mom always told me I had a bad attitude.

When I was a kid I never understood what she meant by that, but now I not only see what she was saying, I'm starting to think she may have been right. Particularly around the holidays, so many people seemed to be recounting the blessings conferred by MS, or some other chronic condition. It makes them a better person, brings them closer to God, deepens their appreciation for life, family, whatever. I suspect I should find these essays inspirational and thought-provoking. I find them thought-provoking, all right. They provoke me to wonder, "Are you f%#king nuts?"

I do not see anything good about having MS. Nothing. I do not feel blessed in any way. I do not see it as an opportunity to become a better person. I'm perplexed by the general assumption that, when you have a chronic disease, it's important to maintain a positive attitude. Why is that? Can somebody point me to some real, convincing evidence that positive thinking makes a rat's patoot worth of difference, to anything?

I'm not talking about wallowing in self-pity, here, making yourself and everyone around you miserable. I don't see any point in that, either (although I admit I do it sometimes. I try not to wallow, but sometimes I put my feet in and swish them around a little). But isn't it positive enough to take one day at a time, enjoy what you can, appreciate the good stuff, and just slog through the rest?

Projecting a relentlessly positive attitude is hard work. I know. I do it all the time. Most people who ask me how I am don't really want to know, not really. "I'm fine..." I say, "I'm good...", and we talk about something else. I wonder if forcing yourself to be artificially positive might even have a negative effect. I find it very stressful to pretend I'm OK when I'm not.

Inspirational affirmations make me itch. "Life isn't about waiting for the storm to pass; it's about learning to dance in the rain." "When life hands out lemons, squeeze out a smile."

"I have MS, MS does not have me."

I admit I'm being deliberately obtuse, here. I realize that the people who say this probably just mean they are determined to maintain a life outside of MS. They will not let the disease define who they are. That's all good. I try to do it myself. But every time I see this, what I hear is "If I fight hard enough, I can beat MS. I can keep it from changing my life."

Maybe you can. I hope you do. But I couldn't. MS has totally kicked my sorry butt. Maybe I should have fought harder. Maybe I wasn't positive enough.

I'm pretty sure MS has not made me a better person. When I finally had to retire from work, one of my coworkers told me, "You've been an inspiration to all of us as we see your courage and grace." It was such a nice thing to say, I only wish it were true. Have you ever noticed that obituaries always talk about fighting a brave battle against disease? I'm afraid mine will have to say I was a pitiful spectacle, a total cringing whining craven coward. I'm not being brave. If there were another option, I would take it. I'm just not aware of any.

I've even had people tell me "You're a survivor." I guess I am. We all are, aren't we? Until we aren't. Then we're dead. To borrow a headline from The Onion, "Despite Best Efforts of US Medical Profession, Death Rate Remains Obstinately High at 100%." Does being a survivor, when the only alternative is being dead, make me a better person? I'm not seeing it.

Maybe it's just my bad attitude.

-- Mme. Crabbypants

A Hero's Journey
by Judy at Peace Be With You

It’s okay to cry.
It’s not lack of bravery.
These can coexist.

Crying can free one.
Stolidness can imprison
a voiceless heart.

A hero’s journey
helps us to understand fear,
not avoid it.

Pity Party, Anyone?
by Mis at Just My Thoughts....

I talk about strength, coping, educating, and support here a lot. But, there's another side to living life with a disease like MS: Pity parties. It struck me after talking to a friend that the image I portray of myself here isn't entirely accurate. "But Mis, you're so strong". I hear that so often, and it always baffles me, because Lord knows I don't feel strong at all. Truth is, most days I am afraid of my own shadow and the shadows of my future. While I do want to encourage those either living with MS or know someone with it to empower themselves with the strength knowledge can give, I don't want to paint myself as some stoic pillar of strength either. So... today I want to bring you along to my pity party.

Yes, I most certainly DO have pity parties too. Most days I go about life in relative peace of mind, but some days I wake up and just think "URGH!" Thankfully, my pity parties don't last long. I spent the first six months post diagnosis in one huge pit of depression, and I learned from those dark days I can not allow myself to wallow in what is versus what used to be. These days my down spells typically last anywhere from a couple hours to couple days, but never very long overall. So why have pity parties at all? Simple really: Because I am human. I really believe anyone struggling in their life has the right to feel, process, and deal with those emotions. It's when we don't deal them that they grow into something much deeper and darker. I've been in that dark place, and I have no intentions of going there again if I can avoid it. For me, letting myself have "ok my life sucks" moments allows me to feel and process those emotions, and then move on.

My pity parties usually consist of a lot of sadness, and are usually brought on by a symptom worsening that particular day. Last night for instance, I had a small one. The left side of my face had been bugging me all day, my left leg simply did not want to work correctly no matter what I did, and I'd been having girdle band pain all day. I had gotten up to use the washroom and my leg just hurt so bad as I limped along. The muscles just refuse to relax sometimes, and trying to walk on a cramping leg is rather painful. My husband heard me cursing under my breath as I made my way through the living room, and asked what's wrong. My response? "I just don't want to have this damn disease anymore." The minute the words left my lips, it was like a flood gate. I ended up in the bathroom for a good 20 minutes just to have a good cry alone. I had had enough, I was in pain, I was frustrated, and I just didn't want to have this wicked, nasty disease anymore. Logically, I know no amount of tears or cursing is going to change a thing. I can curse up a blue streak bad enough to make a sailor blush, and I can cry so hard I fill the bathtub, and when it's all said and done I'll still have MS. But dang it, I don't care. Sometimes I just need a good crying, angry moment to let it all out. A moment to say "poor me, this sucks"...so I can then calm down and move on.

So while I don't want pity from anyone else, sometimes, I do have to allow myself a little pity party for myself. It's my way of coping and moving on without falling into a true depression. And you know what? I truly believe that's ok, if not healthy. Better to have a crying moment in the bathroom than months in depression, right?

For all of you struggling in your lives, be it due to MS, another illness, or simply life circumstances: Remember it's ok to have moments of weakness. It's ok to cry, and it's ok to be mad as hell. Allow yourself to have a little pity party when needed so you can process those emotions. Once you're done cursing and crying- leave the party and rejoin your life a stronger, calmer person. It's great to have strength the ability to cope with all life throws at you. But when you reach the point you're thinking "The next person to say 'but you're so strong!'...I'm going punch out", it's time to let yourself have a much needed pity party. It's ok to be human- even with all our flaws and imperfections.

Be well all :)

Expressing Anger 
by Judy at Peace Be With You

Anger is lethal
to the mind, body, and soul,
yet needs expression.

This powerful force
can also right many wrongs.
Safe release is key.

We MSers must
monitor which of the two
angers we express.

Finding Balance 
by Judy at Peace Be With You

So many brave ones
face crazy uncertainty
and never complain.

Many admit fear,
acknowledge they are so scared.
Which are better off?

Fear paralyzes.
Denial can do the same.
Somewhere balance lies.

This concludes the 53rd edition of the Carnival and the beginning of 2010!!

The next Carnival of MS Bloggers will be hosted here on January 28, 2010. 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, January 26, 2010.
Thank you.
Comments for this post.