May 29, 2011

What's up with the brain?

I would venture to say that those of us with MS probably know more about the brain than other folks.  After all, we live with it changing every day, we see the effects of these changes, we adapt around them as we can. A friend of mine posted an interesting article about the 10 myths about the brain: and I found it rather entertaining to read, knowing what we MSers know.
To quote:
1. We only use 10 % of our brain: well, with MS, we pull in recruits from all over the brain for the littlest functions, covering for the areas where black holes cause transmission losses. We can see it on fMRIs - while others may use a curlicue of brain activity, we use a wonder our brain aches!

2. "Flashbulb memories" are precise, detailed and persistent: Hey y'all?  Remember that guy's name? Or why you are storing the iron in the fridge? Or where the iron is this time?

3. It's all downhill after 40, 50 60 - ah, the luxury of time. Actually, those of us with MS know we have to keep our brains active and use them all the time, or the slippage is truly magnificent.  We are on medications that muddle our heads, too, all to keep our cranky bodies from misreading the messages from on high and pushing us into spasms and twitches. They make us foggy. But first thing in the morning, we rock.  Ask us anything. Just not after 3 pm.

4. We have five senses: The authors here argue that we also have proprioceptive senses. Those ones that tell us where we are in space. I laugh.  Hollowly. As I fling my body here and there.  Something about losing the sense of touch and balance does something to that proprioceptive sense. I personally often think I am standing up straight when I am actually leaning slightly to the left (political reasons, sorry) and thus I weave elegantly like a sailboat in the wind. And don't ask me where my foot is at the moment.  It could be anywhere. I assume it is at the end of my leg, but unless I look, I can't really be sure of that. Same goes for one of my breasts. Unfortunately my stomach remains.

5. Brains are like computers. He argues this is a myth. I argue our brains are like computers using Windows (TM).

6. The brain is hardwired.  Well, we know it's plastic, in our case somewhat like silly putty, given to recording images that get stretched as we play with them and melting into a flat disk if not played with...Hey, if we didn't rely on brain plasticity we'd be staring into the air, gasping slightly. Hurrah for plastic brains! Although if I am told to play Sudoku ONE MORE TIME, I am going to explode. Not all of life can be reduced to squares of numbers. I prefer to struggle with learning to play the ukulele.  Many good returns from this - music is multitasking for the brain, plus if I learn to play it well enough I can use it to annoy all my friends and relatives by singing "tiptoe though the tulips". Plus it hides my tummy.

Well, I could go on, but you get the idea. Life with MS is an exploration of the brain in all its marvels, whether we want to or not. Betcha you didn't know you could have hiccups anywhere, did you? Try them in your toes for a treat.

Heading out for the MS walk today, where I hope to be able to persuade my brain to let my legs do their thing without interruption. Lately it's been telling my glutes that knotted up is the way to be. Makes it hard to do that forward swing thing so I look a bit like Tim Conway doing his old man impression. Mind you, I laugh at the thought of him, so maybe that's a good thing...

May 24, 2011

Is it all about the poo?

My brother sent me on this podcast  from freakonomics radio about how a man with MS was "cured" by getting a fecal transplant.  Apparently, if we have bad germs in our guts, we can get some good germs from someone else's poo and allow them to inhabit our guts.  This will remove the harmful bacteria that live there and therefore return us to health. Assuming they beat up our bacteria and take over.

It's an interesting point.  If we are, as described in the podcast, 10% us and 90% bacteria, there's something to be said about reorganizing our friendly colonists (pun intended) to be more friendly. And, after all, that discovery of H. Pylori and ulcer causation revolutionized the treatment of ulcers.

And, truth be told, there is much research to indicate that MS is probably infection-related, given that it involves an autoimmune response that must be triggered somehow.

I'm not sure about having a poo transplant, though. There's a lot of nasty stuff in poo, much of it I would not want to visit.  Montezuma's revenge, cholera, who knows what else. I'm reminded of the rabbits of Australia - brought on for hunting, reproduced like mad, then they had to treat the rabbit problem, and lost control of that, too.

And I can't help but wonder if some of the same magic thinking is going on here that hangs around those in support of cleanses. Our digestive tract is full of little creatures that change and reproduce and wriggle about depending on what environment we give them. I think they'd be hard to manage long term.

The fellow they interviewed said that he was all better after his treatment, but time will tell. Relapsing-remitting MS is a trickster that way - you can think you have it beaten and then it sneaks up on you from behind (har har). I hope he stays well. But it's another tale of anecdote not making scientific proof.

I'm not signing up for the randomized controlled trial, though.

May 23, 2011

Being funny...

I was at a MS support group the other day and joking in that graveyard way a lot of us with MS have about the changes in the disease, the weird things that go on, the humour in our everyday challenges. It seems to me that a lot of us with MS have that kind of humour - there isn't much that can be done for the disease, so we may as well laugh and get on with things. As we can, lurching merrily about and etc, dropping things, wobbling here and there...

But one lass took exception to our joking about.  She was seriously upset about MS and felt we weren't taking things with the right sense of gravitas. She was right.  We weren't. Right then.

MS is so often invisible because we don't get seen when we are down and out.  We go to ground, we hide at home, we don't answer the phone, we rarely speak.  We deal with our sorrows and losses privately, knowing that there is a limit on what we can expect friends to tolerate, that daily complaints just bring us down, that our private struggles don't make for good press.  The disease doesn't go away, it doesn't get better, we aren't "fighting" it like one does with cancer (because fight as we might, we can't beat it).  It becomes boring to share. Even a disease like MS that changes every day can become same old, same old.
This doesn't mean we don't spend several days of our lives destroyed by grief, or struggling to get anything done, or depressed to black.

When we get together, we share our challenges, but we also have a good laugh.  People who don't deal with this chimera of a disease don't understand what we go through, and it feels so good to laugh with those who can nod and add to the joking. It helps. Like this drawing by Bill Watterson, seeing others laugh can't help but make you smile.

So I say, let's laugh, giggle, snort, guffaw, and hoot this disease into the corner as often as we can.  It will creep out again, but let's enjoy our sorrow-free moments.  Let's wallow in them.

May 17, 2011

A kiss is just a kiss....

Epstein-Barr virus
But "kissing disease" (Epstein-Barr virus) can be that gift that keeps on giving...
I had mono my first year in University.  Sick as a dog, I was. Sicker than your average dog, in fact. What really burned my hide besides the fact that it nailed me neatly in time for exams (I slept through my biology exam) was that I HADN'T KISSED ANYONE for months before I got it. It seemed unfair.  Should have the kissing, anyway, if you're going to suffer with that stuff. It was nasty.
The next year, my dad was diagnosed with non-Hodgkin's Lymphoma. Apparently it is related to Epstein-Barr viral infection, which he had had in university. He fought it, bravely, for 10 years, gradually whittling away to a pencil stick of a man who gleefully ate hot fudge sundaes while I tried to diet and then told me over and over again how wonderful they tasted. "Let me describe it to you," he'd say. "It'll be almost like the real thing." He was so thin I didn't begrudge it, and we snorted with laughter at each other, me trying to get skinny, he trying to get fatter.  But when he was diagnosed and they told him about EBV, I felt a little shudder run up my spine.
Then I get diagnosed with MS, the first in my family to do so. And as I read about the condition, I see that ol' EBV raising its ugly head again. Surely they could come up with a vaccine for this? They've managed one for chicken pox, another herpesvirus - I know vaccines for herpesviruses are challenging because of these viruses' nasty habits of hanging about forever in your nervous system (think shingles, that other herpes that we all hope never to have to explain to anyone, etc.).  But I'm beginning to think that those of us who do get really sick with EBV have pretty serious risks of developing other nasty and healthcare expensive things. Might be worth the investment.
And I'm not the only one...
Whaddya say, big pharma? Got any vaccine in that pipeline for MS prevention?
A virus similar to herpes could be a risk factor for multiple sclerosis
Publication Date: 2011-05-17

Tel: 34 958 242 071

At present, while there is no cause known for this condition, patients with MS seem to have genetic vulnerability to certain environmental factors that could trigger this condition, such as the Epstein-Barr virus. Scientists at the University of Granada have found a relation between the Epstein-Barr virus –which belongs to the herpesviruses family–and the development of this condition

The Epstein-Barr (EVB) virus –belonging to the herpesviruses family, which also includes the herpes simplex virus and the cytomegalovirus– is one of the environmental factors that might cause multiple sclerosis, a condition affecting the central nervous system, which causes are unknown. This has been confirmed by University of Granada scientists that analyzed the presence of this virus in patients with multiple sclerosis. Researchers analyzed antibody levels, that is, antibodies that are produced within the central nervous system and that could be directly involved in the development of multiple sclerosis.

Multiple sclerosis is a demyelinating condition affecting the central nervous system. Although the cause for this condition is unknown, patients with MS seem to have genetic vulnerability to certain environmental factors that could trigger this condition.

While other studies have tried to ellucidate whether infection with the Epstein-Barr virus could be considered a risk factor in multiple sclerosis, what University of Granada researchers did was conducting a meta-analysis of observational studies including cases and controls, aimed at establishing such association.

A 151-patient sample

In a sample of 76 healthy individuals and 75 patients with multiple sclerosis, researchers sought a pattern that would show an association between this virus and multiple sclerosis. Thus, they determined the presence of ant¡bodies to Epstein-Barr virus antigens synthetized within the central nervous system. Simultaneously, they identified viral DNA to measure antibody levels to EBV within the central nervous system, and the presence of EBV DNA respectively.

This piece of research was conducted by Olivia del Carmen Santiago Puertas at the Department of Microbiology, University of Granada, and coordinated by professors José Gutiérrez Fernández, Antonio Sorlózano Puerto and Óscar Fernández Fernández.

The researchers found a statistically significant association between viral infection and multiple sclerosis starting from the detection of markers that essentially indicate an infection in the past, while markers that indicate recent infection or reactivation are not relevant.

The researcher Olivia del Carmen Santiago Puertas state that, as the factors triggering this condition are still unknown “studying them is important to try to develop a prevention method”.

This study found an association between MS and some viral infection markers “but, to obtain a definitive conclusion, further research is needed with a significant number of patients that combine different microbiological techniques, where the different viral infection markers are recorded, and assessing patients’ clinical state even years before the onset of the first symptoms of multiple sclerosis”.


- Relation between Epstein-Barr virus and Multiple Sclerosis. Analytic study of scientific production. European Journal of Clinical Microbiology and Infectious Diseases. 2010.

- New Strategies and Patent Therapeutics in EBV-Associated Diseases. Mini-Reviews in Medicinal Chemistry. 2010.

Contact: Olivia del Carmen Santiago Puertas. Department of Microbiology, University of Granada. Office phone: +34 958 242 071. E-mail address:

Subject: 39;
Country: Spain;
Institution: Educational Body (School, University);
Category: Result; 
RCN: 26753
Quality Validation Date: 2011-05-17

May 8, 2011

Arrgh. I feel like a pirate...

I think I might have been doing a bit much.  Today I have a left eye twitching like Inspector Dreyfuss, my right foot seems to have forgotten how to hold its bones together, my left foot wants to do toe taps, and I've developed a wide stance and walk. And for some reason my right buttock thinks it needs to knot up. I'd write more but my vision is on strike. The only difference between glasses and no glasses is a qualitative change in the impressionistic view of my world. Whew.
I think it's time for a spot of lunch and a nap. And then some stretching. Maybe I can peel off the pirate cap after that and regain some sense of normalcy.

May 5, 2011

that MS Waddle...

I am just getting sexier and sexier. Met up with my wholly amusing and quite wonderful new neurologist today (these happy health care providers are throwing me off - everyone seems to be having a good time and it's even been raining for over a week straight) and he made me walk across the room and said, "Ah yes, that wide stance walk to keep your balance. Hmmm." I hadn't thought about it much before although I know I have times when I stomp about like a sailor on shore leave, striding this way and that, but apparently now, even on short walks, I've developed an attractive waddle. Nice. I blame my right hip flexors, who don't seem to be getting the message these days about locomotion - and my left foot, that insists on dropping to catch the ground with its toe. It makes an attractive sight.
And today, it made for an almost fall and a twisted ankle that made me shout.  Fortunately, Chutney the magnificent therapy dog was with me and proceeded to drag me forward with his leash and tangle himself around me and a tree to stabilize everything. He is so helpful.
So, to add to my middle aged spread, I've developed the "here's me head, me behind's coming" walk that my mother used to spot in others, plus a wide enough stance that this same mother would argue I looked "ready for anything".  She really was a shocking woman.
As for me, I think I'll take to using that cane thing.  Could be more debonair than waddling.

May 3, 2011

I'm a walker....sigh...

I've been part of the MS walk for 4 years so far. It's been a challenge every time. The first time, I walked it with relative ease.  The second time, I staggered with my cane, and was in intense pain by the end. The third time I volunteered and helped empty garbage and fill out surveys, which required me to stand all day and which put me in bed for a week. My plan was to avoid the walking part, which I felt was getting beyond me.

This year, I'm in a new location, and the walk approaches quickly. I should call and offer my volunteer time, but I'm fairly sure they are well covered for the coveted sitting positions already, and I'm in recovery from my move here to rainy Dartmouth, and even volunteering seems too much for me right now.

I've been lucky with my MS, in that I haven't had the sort of acute flare-ups that require hospitalization, etc. I think part of that is just that I don't bother calling the docs when I feel rotten - I just go to ground and wait til it goes away.  But I've had a bad few months, and things are, alas, getting worse. Foot spasms are now my constant companions, and my legs give me grief whenever I walk - my hip flexors just aren't that enthusiastic about the whole movement thing. My vision is often misaligned, and vertigo and I hang out fairly frequently.  My glasses no longer work for my right eye, the one that had the optic neuritis before. It's like a slow erosion of abilities. Fortunately, it's SLOW. I am so grateful for that.

My brain testing did reveal I have lost cognitive abilities, too.  Nothing to keep me from driving, YET. But that lurks ahead, too.

But hey, I'm an old lass. I've had fun, I've inner tubed the glaciers on Mt. Rainier, I've walked through Yellowstone, I've travelled in Europe, I've had a career that was rewarding and helped others. I've raised three wonderful kids and delight in them. I feel most for the younger people who get this diagnosis - they need a cure, they need better treatments, they need to be able to live a life like what I have had so far. My life isn't over by a long shot, but I am content to settle a bit, to change my focus, to give up some pleasures, having had the chance to experience them. Those younger MSers deserve that option, too.

So I'm going to haul my tired self and my glamorous cane and my puppy out to do the walk again this year. I probably won't be able to walk the whole way, but I'm going to give it a try. It's important.

I'm hoping those that read this blog feel like donating to the MS Society  - it's easy to sponsor me - there's an online form (click on the link above), or you can mail your sponsorship in.  Every tiny bit counts. The Society has been a huge help to me, and I'm looking forward to working with the new chapter here. They offer client services that keep people with MS and their caregivers better off than they would otherwise be, with support for devices and referrals and information and helpers. They fund research that is progressing quickly, especially now that stem cell research has been approved in the US. Help me help those that follow me. I'll do what I can.