December 31, 2010

More about CCSVI, from a thoughtful voice.

http://vimeo.com/17889703
Kidnapped from Marc's site, the Wheelchair Kamikaze http://www.wheelchairkamikaze.com/

This doc explains a great deal about the science and lack of science still existing around the CCSVI thing.  He does say venoplasty is very safe (stents ARE NOT), but he doesn't address any problems caused by repeated venoplasties.  he also explains some of the structural difficulties in diagnosing CCSVI as versus regular venous functioning.  It's well worth a listen.

For my money, I still don't understand the why.  When the doc here says he has no evidence that the stenosis is correctly diagnosed and there is further, no evidence that it has any relationship to brain disease, why does he then say it's okay to do it?

My older brother is a gastroenterologist. When he joined his new practice, he was reprimanded for not using the fancy diagnostic machines as much as they had budgeted him to do - he deals with children and prefers to be as non-invasive as possible. But his partners weren't happy, because in order to pay for the fancy machines, they had to thrust x number of patients through it. I can't help but feel suspicious that some of the eagerness in for profit centres to do this procedure has to do with this pushing to use expensive machinery.  A good bunch of we MS patients, demanding treatment, must make these places sing with joy and order a new set of post-its. (I worked in the non-profit sector and lemme tell you, a new order of post-its, even the cheapie copies, meant there was excess money in the budget - otherwise we reused photocopied paper, torn in fourths).

I keep hear the phrase, follow the money.....yep, the drug companies have had a healthy chunk of it up til now, and you bet the other sectors of the health care system would sure love to have a handle on a source of money such as we provide. Especially if we have to be re-plunged frequently! Wahoo! and get those Jaguar keys, Macie, we're going for a ride....

Sorry.  End of year cynicism. It'll pass. Til then, Happy New Year All, and Never ever get a stent in your neck veins, okay? It's dangerous.

December 16, 2010

"Well, it looks like you've just gotta live with it...."

Isn't getting older grand?

The thing with having MS is that you never know if a new crazy thing going on with your body is a transient (with luck) sign of your MS, or if there is something else wrong ticking away in your body.  After all, a ms body is, as we say in the fiction game, an "unreliable narrator". It makes one feel a bit of a neurotic.

I remember being in agonizing pain for several months, thinking it was just fibromyalgia, only to find I was suffering from bursitis in my hips and a torn rotator cuff. I mean, really.  One night a few months ago, I had agonizing pain down one side and thought it was a muscle spasm, hopping in and out of the bath several times to relax the muscle and wondering why it wasn't working.  Well, it was a kidney stone, so no wonder.

Now I have lucked into an excellent nurse practitioner who actually believes in preventive health care. She has sent me for various tests and picked up all sorts of interesting things, none of which are acute enough yet for the people she refers me to to find interesting.  So I am in the bizarre situation of waiting to get worse.

Which is pretty funny when you pair it with the MS thing of "going to get worse". So I am under observation for my kidney stones to see if they grow any bigger, am waiting for the gallbladder attack to demand removal of my gallstones, and now just returned from a rehab doc who looked at my knees (and my insurance) and said, "hmm.  Well, they don't look too bad - even if you can't walk on them reliably.  So let's just leave them, shall we?"

And she explained that the reason my knees were malfunctioning was that my hips were weak.  This after months and months of squats and exercises of the hip variety.
So I suppose this is where the rubber of my body hits the road of the MS. I remember early on going to a physiotherapist because one leg remained weak despite exercise. I guess the exercises are helping me stay relatively okay but not really improving much.

I just wish, sometimes, that someone out there would say to me, just once, "Well, I've got JUST the thing for that. Let me go get it and in a few minutes you'll feel as good as new!"
No wonder people are flocking to CCSVI despite the dearth of positive results and the gradually accumulating negative outcomes. We're just so tired of hearing, "Well, it looks like you're going to have to just live with it."

Unfortunately (and here I would like to add "Merde alors! piss piss piss!" as I do in situations that are fraught with disaster), I think they may be right, and we will just have to adjust to our bodies gradually getting worse every day, until they become bad enough that they become interesting.

And hope that we stay boring for just a wee while longer.....

December 9, 2010

Well, I'm not happy.

Yep, the Mad Sow is positively flipping. Went for a recheck of my eyes and their visual fields today and my lovely opthamologist is sending my report to my neurologist, intimating that things are not better and are, in fact, worse. Mind you, optic neuritis, from what I read, gets gradually worse over a period of days to weeks.  Then it can resolve itself, or, alternatively, result in permanent vision loss. Lovely.
Way back when I first got diagnosed with this disease, I bargained with God.  Okay, I said, I can cope with the physical things (some of them - I really wasn't hoping for incontinence and such) - but leave me my mind. So when the cognitive/emotional things took over, I was a bit miffed. Now I'm bargaining again - listen, I know I can never find my car, or add up my bills and I over tip to extremes because figuring out 15% is just too hard - but you KNOW I love reading and writing and I kindof need to be able to see for those things.
And then parts of my vision wander off. God only knows where they've gone.  The eye doc thinks it is all quite mild right now, for which I am totally grateful. However, I'm wary. And oh so tired, fatigue being the other major sign of this particular flare-up.
I'm not happy. The whole shootin' match has joined in, making my left eye unable to hold position for the test (the vision loss is in my right) and my legs are twitching to beat the band. and if I didn't have a puppy to tend to, I'd be sleeping all the time. Blah blah blah.
But enough whining.
Things can only get worse, so I may as well enjoy what I have now. I'm off to read a book. While I can.

December 1, 2010

Doctor my eyes have seen the years

and the slow parade of fears without crying
now I want to understand....

Today I finally bent and took my eyes to be checked at the eye doc's place - they've been giving me a bit of grief lately, giving me needle sharp pains at times, followed by blurring. Especially my right eye.  I know I've given up on doing close work even with my glasses on, as I can never rely on the darn things to focus when I want them to.
http://www.nlm.nih.gov/medlineplus/ency/imagepages/1143.htm
So I got my visual fields tested and discovered I have a slight and somewhat scattered loss in my right eye.  Eeeeeks.
Can I just mention this possibility of vision loss scares me most of all?

Ah well, perhaps it's just a flare-up. Or maybe I just have dry eyes and it is all just fatigue from the testing.  I go back for a retest next week, and I'm hoping all is better and I just wasn't paying attention. Please. Please?

Doctor my eyes
Tell me what's wrong
Was I unwise
To leave them open for so long...
http"//www.youtube.com/watch?v=pCTYxIsLThA

November 30, 2010

Walking is hard!


I feel a bit like those awful Barbie dolls that used to be sold some years ago that would say, when squeezed, "Math is hard!" I can empathize with Barbie, with her spastic always pointed feet and her knees that bend improperly, her fixed hands. My body is a bit that way today, as the flare-up I've been having for the past week adds to the foolhardiness of walking all over the place when visiting my son - it was a lovely tour of Waterloo but I foolishly left my cane at home and had to buy a new one halfway through the day.
So we wandered on, and I got such a good feeling about wonderful Waterloo - I finally saw it as my son sees it - accessible, filled with easy transit connections, charming shops and restaurants, pleasant people, pretty sights. At least until my hip started giving out.
Today, I have a puppy who has spent the weekend in a kennel and returns expecting fun fun fun and a body that wants sleep sleep sleep, preferably lying flat without a young pup slobbering all over me. Perhaps I can persuade him for later in the day...Meanwhile, I dragged myself out for a walk before the expected rain starts.  Chutney the poodle kept looking back at me, waiting for me to speed up to my usual pace....but it was all I could do to put one leg ahead of the other. And now, typing seems beyond me.
I keep reading about these people who are desperate for CCSVI treatment who have fewer symptoms than I do. I don't understand the urgency.  Sure, life is grim sometimes, like today, but rest and self-care often improves things and I feel somewhat better. I'd still rather wait and see what comes of the research. All of it, including the research into other areas...

November 19, 2010

Mouse Cortex Array Tomography Journey


This gives me pause, for wonder, for thought, for admiration. How complex the brain of a mouse. How marvellous. And how inscrutable. I can't help but wonder at the work of neurologists and neuroscientists who try to plumb and understand these depths.
I read about people fearing that we will soon have implants that read our thoughts and act on them - it seems impossible, with so many different connections and pathways to analyze, that anyone can design such a system for more than one person - it would have to be so finely tuned.
We still don't understand the effect of antidepressants or the impact of the meds we take for our MS, and sometimes it just seems unreasonable that we shouldn't understand these things, until you see something like this, and realize it's a bit like understanding the universe, or the effect of atoms and nanoparticles and black holes and iron deposits and inflammation and anger and love and chocolate.
It's astonishing that we have come so far. A credit to that complex, intense thing, our brain.

November 11, 2010

It's Walking (and fundraising) time

I can walk and carry a bone, too!
The ever cute puppy Chutney and I are setting a goal to make it through the MS Walk next spring. It's May 1st in Ottawa, and if I organize myself to move out East, that will be my last month in the Capital for awhile.
Last year I couldn't walk the 5 km. Last year I could barely stand for the event - I participated as a volunteer and then collapsed for two weeks. Since then, though, I've made a commitment to myself to exercise regularly - daily. I've worked my way through the Wii Fit and the Wii EA Active and Active more and am eagerly waiting for the EA Active 2.  The puppy, a tiny toy poodle, requires regular walking to forestall house destruction and keep him understanding who is boss.  So twice a day we head out for a walk - sometimes long, like in the mornings when I have energy or short, like in the afternoons when I do not. We're gradually building endurance, the two of us.
I'm doing the fundraising part of the walk because I know how much we need the support the MS Society gives those with MS and their families.  I've been honoured to be on their Board this past year, and have seen how hard everyone works, how they do whatever they can to help those that need it, how they take cuts in everything to ensure there's enough money for research and client services. They're an amazing group.
I've also seen people much farther along the MS pathway than I am.  It's heartbreaking.  That said, these folks are fun and lively and good company and generally speaking, astonishingly positive. But life in a wheelchair just can't be as much fun as they make it seem.
So, I'm putting out an ask, as they say in executive speak these days -
1. I'd love it if you would join my team of walkers (things are much more fun in bunches), and 2. if you can't do that, I'd love it if you would sponsor me. It would really help me work toward my goal of being able to walk the 5 km - and maybe after that, the Camino.
Every little bit helps. You can sponsor me online at:http://msofs.mssociety.ca/2011WALK/Sponsor.aspx?&PID=1243034&L=2

Thanks so much!

November 9, 2010

The global view

I've always prided myself on my ability to scan information and grasp the big picture - like a hawk circling on high, I always seemed to be able to see patterns and goals and obstacles clearly.
This just isn't working any more for me.
It's come on slowly, sneakily.  First, I've lost the ability to read medical studies and grasp them without several go-overs. Now I find it harder and harder to see patterns in Scrabble or to figure out spatial problems or see things in a holistic way. Driving becomes a series of small steps, trying to organize my finances slips away.  It's not that I'm becoming senile or anything, I think.  I just seem to have a bit of a traffic snarl in the part of my brain that follows patterns through.
On the good side, I forget stories that I've read almost immediately, so I can reread them again and again. On the bad side, I have 40 packages of spaghetti in my cupboard. I know I should make a list. But that's admitting there's a problem.
I find it frustrating to be losing my analytical ability, my big picture thinking, my sense of global understanding. Of course, maybe I was just fooling myself that I had those abilities, but my degrees say no...
Practically speaking, maybe it means I should concentrate on short stories instead of novels for writing, focus on simpler tasks, do brain training, keep up with the exercise. All I know is that the thought of ever having to manage a workday again seems impossible. How would I keep track of all the things I had to do?
Oh, and also on the positive side, my wobblies are back, so I have the advantage of looking vaguely drunk if I don't concentrate on walking. Saves on actually having to buy the booze!

November 5, 2010

The creeping terror

Ah yes, well, I do like to be dramatic.
So here I've been, feeling vaguely well for the last while, exercising madly, almost able to walk without occasioning some disturbance in my motor core.  But the evil MS doesn't sleep. It's still there, and as soon as I put pressure on myself, it slithers out around the edges and does little things to me, like making my right toe drop just for the heck of it, or making my balance wonky all of a sudden so if I turn about I risk falling, or stopping my brain from chugging along appropriately. My typing degrades.  My ability to make decisions slips ever squidgewards. I make up silly words....

Marc, the infamous Wheelchair Kamikaze, pointed out the slithery dread in his blog today in talking about why there seems to be such a split between neuros and MS patients regarding CCSVI. The thing is, all the stuff they offer us just delays the inevitable.  Our brains remain twitchy, swollen, and the MS continues to kill off the myelin or astrocytes or whatever they are figuring out now, even when we appear fine. I have a good friend who has pointed out several times that we none of us know our fate, and tis true I may be run over by a bus tomorrow - but the difference is, we do know what our future MIGHT be, and it causes fretfulness. We would prefer a cure, thanks.

Every time I feel my body slipping, I can feel that dread.  I can usually compartmentalize it, promise myself that I will worry about it tomorrow, so needn't do so today, but when I head to bed and notice that, despite the medication I am on that used to work to stop my leg spasms, they have returned - well, it's scary.

Or when I go to an event and see people with MS much further along than I am - it's hard not to put myself in that wheelchair, imagining how I might cope, wondering how they find the strength to do it.

Then I shake myself and tell myself that really this just means I should squeeze joy out of whatever fit days I have left, and find extra joy in wherever I need.  It's true, but it's not always easy. Pollyanna-ishness is tiring.

It makes me want to punch things.

October 5, 2010

Hope vs. despair

I've decided to get a puppy.  My family members probably think I'm mad.  After all, I had a perfectly wonderful dog, Dudley the magnificent (in the photo) who I loved to bits, and I sent him away to live with another family shortly after my diagnosis.  The thing was, I was fully prepared to be crippled and in a wheelchair after a year and didn't want to subject a poor wee doggums to the boring life that would mean.  Dudley went off to a family of five, with three cheerful little girls who promptly dressed him up in doll dresses and hats and who he went to happily, used to the pell mell of a herd of Bichons in his parental home.  My quiet little place must've bored the poor fellow, so I'm glad he's put his paws down in a place where he will be loved to excess. (and which has a fenced yard!)
I have cycled through pets, looking for companionship in a container I could manage.  I have my ferocious parrotlet, Dora, who tries to run my life and who lives a very spoiled existence indeed.  She's sweet and bossy and prefers me to any other landing surface which is adorable. But she's not quite enough.
This puppy is a vote of confidence - in me, in my ability to deal with this disease, in my ability to live alone and succeed at it. He's sweet and roly poly and all that, but his genes are smart, and I know if I work at it I can train him to be a great companion animal. He will make me walk even when I don't really feel like it, he will make me laugh also. I need this, more than I can admit. Living alone with an unpredictable chronic disease is lonely at times.  It's not that I want a person around, though, necessarily, though I like that.  Sometimes I just need a mute companion who will live and breathe around me and care for me.
I do hate the unpredictableness of this disease and wonder about taking on a new responsibility - but then I have hope that the progress will be slow, that I will have time to truly enjoy my new little buddy, exploring new places through dog's eyes. I have hope.

September 28, 2010

Today I awoke...

to dreams of spasms.  I'd been watching a tennis match with friends and family and we were sitting at a picnic table, when suddenly my legs spasmed up and arched over the table as I stood, seeking escape.  I ended up having to crawl away, while my vision greyed over and eventually I was blinded.
I remember calling to my mother, "Can we just please go home?"

It was the kind of dream that sticks with a person. The kind that makes your body twitch even when you don't want it to, the kind that sends your mind into unhappy areas, thinking of this disease and what it is doing within your brain, undetected.

There's yet another new theory about MS - that the problem isn't death of myelin, but instead, activation of astrocytes, the little cells that make and repair everything to do with nerve cells. If they go rogue, bad things follow.
Ah well.  I should feel reassured that as the stem cell and other research goes ahead, we are coming closer to an answer to this disease. I can only hope we figure out prevention soon - I have kids, and  my biggest fear is that they will be visited by MS themselves.

But the more I hear, the more I realize this is a very complex entity we're dealing with here.  And I just really wish it would stay out of my dreams.



http://www.nature.com/neuro/journal/v7/n10/fig_tab/nn1004-1021_F1.html

September 23, 2010

Blaming and hating

There's so much anger out there about the CCSVI thing.  It makes me weary.  I mean, heck, we're a pretty unlucky gang, we MSers, and we should be standing together, rather than trying to decimate each other. It reminds me of the battles between stay at home mothers and working mothers, where both sides just hurl invective at each other (and men) without ever acknowledging the right things about the opposing side.

It's exhausting.

I find it most frustrating when the MS Society gets attacked.  These are the same people who get people wheelchairs if they need them, find walkers and canes if necessary, look into housing issues and legal issues ( or at least refer you to someone who can help) and yes, fund research. And yet all of a sudden they are the great satan and do nothing but evil. I can't agree with that viewpoint. In fact, it seems like ingratitude of the highest order.

I know our MS branch is working so very hard to raise the money needed for client services, ongoing classes, research, education and awareness. The small group of  staff are everywhere, totally dedicated, working many hours overtime to fill in for volunteers who couldn't make it, to help make events a success.  There are many many volunteers who help with their work, many of whom feel disenfranchised by the anger directed at the society. All in all, this hatefulness is not going to get us anywhere. Except maybe the MS Society won't be able to help those folks who really need their support. Do we want that?

Research is ongoing into CCSVI. Fortunately (I believe it is not going to be a cure-all), research is also ongoing in several other areas. This is a complex disease.  A study (http://www.eurekalert.org/pub_releases/2010-09/cp-isp091610.php) today reported that the immune attack on neurons doesn't just attack the myelin - it attacks the cells themselves and changes the calcium balance. It's preliminary, but it just adds to the messiness around this disease and the very real challenge in treating something that is so different for each person.

I wish we could concentrate on working positively instead of negatively.  I wish neurologists wouldn't be so rude about it all. I wish they were cuddlier overall. Mine does not fill me with love, I gotta tell you. So it's understandable that people might get a bit angry at the neurologists.  But hey - the neuros have their own problems.  MS patients are notoriously well-informed and somewhat demanding.  We can be a pain in the arse.
Maybe we need to just chill on both sides of this thing and admit we may both be wrong. Or right.

There's one thing I do know.  The MS society folks and the neuros aren't hoping to keep us sick forever. That's just paranoia. There's plenty of work to go around.

Now the drug companies?  Well, they love it when you have to take a medication forever. It's true. I'd love to force Teva to lower the price on Copaxone, which they've been ordered to do but have ignored up till now. I'd love it if we could all get off the statins everyone is being prescribed, or the antidepressants. I'd adore a national pharmacare program here in Canada. We have fill-ins, but they involve so much paperwork it's almost not worth the trouble. Almost. Except that I'm at $1800 a month for prescriptions alone (low estimate) and that could bankrupt a gal.

September 18, 2010

Dating and the Sow

It's a challenge, this whole dating world and the Mad Sow. It isn't easy to not bring it up. I'm rather young to be retired, I obviously don't go to work, and I look relatively fine.  Questions arise. I've taken to telling people I'm a writer but I need some more publications if I am to sound persuasive about it all. Maybe I can just say I have an inheritance that doles me out a dribble of money each month?

But the question is always there - how bad is your illness?  How bad is it going to get? If I fall in love with you, will I be saddled with a cripple? Harsh, but reality is many women with MS are left by their partners. And vice versa, though less frequently. Chronic disease is no picnic to think about. And though I deal mainly with crushing fatigue and numbness now, who knows what tomorrow may bring? I don't. My neurologist says my disease looks relatively quiet. That's nice and I'm grateful. The fact that I was diagnosed older than is common could be good or bad, depending on which study you read. I take my meds, I try to eat properly, I exercise madly when I can. I'm doing everything I can to keep well, but my brain might have different ideas.

But, let's be honest here.  I'm over fifty.  Almost everyone in my age group has at least one chronic disease. Many of them don't know they even have it. Many of them will die well before me of high blood pressure or stroke or diabetes or cancer. It's the idea of having MS that scares people - the image of wheelchairs and walkers and trembling limbs and spasms. Heck, that scares me, too.

The other diseases aren't as visibly disabling in people's minds. But as a nurse, I can see them.  I can see the smoker, coughing, and visualize their lungs, see the COPD waiting ahead.  I see people who don't exercise or who are scarfing down mallomars, and I know what they'll likely be told soon.

So I get slightly crusty when I'm quizzed about my MS. I'm good now, I tell people. I have no idea how I'm going to be tomorrow.  And neither do you know how you will be. Let's just pretend we are all healthy and live the life we have, right now.

September 14, 2010

Crashing

I feel like an ant who comes across an ant lion trap.
For the last few weeks I've been feeling fine. No real signs of the Mad Sow, exercising like a crazy thing, doing aerobics and strengthening and able to walk and hike and carry heavy things and balance and move and filled with energy and light. Carrying and toting and sending kids off with furniture and stuff I helped load into vans, helped take off vans. I am busy with my daily endeavours, running here and there and doing important ant-like activities. I'm cheerful, glowing, stimulated and stimulating.

Suddenly I notice the sands slipping around me. It becomes harder to exercise - my balance is off - I start to risk falling as I step into aerobics. I find volunteer things seem too difficult to continue with -my brain won't take on new information. I stop eating so healthily because it's too tiring to even think of food preparation. I get tireder.

Last night, needle sharp pains start in my eyes.  I drive my car against the side of a building when I do a drive-through for coffee. I go out for lunch and am overwhelmed with the noise and chatter and can't quite make my head work properly.  After lunch, I am entirely wiped out, stagger home and crash into bed, too exhausted to move, lying flat and unconscious for two full hours. Now I'm awake, but shivering like I have the flu. I am slipping down, like the ant in an ant lion den, grains of sand slipping under my feet.

Like the ant, I'm going to pretend the jaws aren't at the bottom of the hill. I'm going to keep scraping at the sand grains, hoping to pull myself out of the trap. I'm going to rest tonight, eat healthy things, look after myself with green tea and cuddly blankets and send myself back to bed early. And hope, hope, hope the edge of the pit is closer than it looks.

But there is something nasty waiting at the bottom of the pit.

I like the healthy ant me. I don't want the illness to take me again. I don't. I don't.

August 6, 2010

Buff but bummed

Okay, so I've been working out like crazy for a month now.  I've earned praise from my automated coaches on Wii Active ("Keep this up and you'll be coaching ME soon!"), I am now familiar with the elliptical downstairs and have managed to get to three bars into the "weight loss" category - I've even developed considerable arm muscle mass and slimmed my legs.  My blood sugars rock. My body moves without complaining too much and my balance has improved.
So why oh why am I spending the REST of my days in sleep or sluggish brain death? I should be getting peppier as I go, as I lose weight, gain muscle - but instead I slump and collapse after lunch, sleep for hours, wake for dinner, sleep more.

And worse, despite the muscles, lifting groceries is still so difficult. Doing housework seems beyond me.
I know my body is getting in shape, but something in it isn't getting the memo. Although I can see slight improvements to stamina, I'd expect more after 30-60 minutes of exercise almost every day for weeks.
All I can hope for is that with cooler weather, all this work will show. And nap to extremes now.

August 2, 2010

Nocebo, placebo, kissing...we need to know more!

And so it starts. Some studies refuting Zamboni's claims: http://www.news-medical.net/news/20100802/Research-shows-no-link-among-CCSVI-and-development-of-multiple-sclerosis.aspx

Two small studies, and I'm sure those looking for a conspiracy will note that they were conducted by neurologists, but they are a start of a question around this issue.
Saskatchewan has decided for clinical trials of the venoplasty but I've noticed that guardrails are being placed around their statement as talk progresses. Still, I do hope we get some REAL evaluation of this procedure, not just anecdotal statements of hands feeling warmer or being slightly better for a while. I want longer follow-up, better testing, perhaps MRI changes.

One of the other interesting studies I read lately mentions how people with MS are more likely than those without to react negatively to placebos, to complain about side effects from sugar pills, etc.  The "Nocebo" effect, as studied in this meta analysis review. http://msj.sagepub.com/content/16/7/816.abstract

We've always known that the placebo effect has a strong impact on study results; now it seems we react more both to positive and negative stimuli.

It's enough to make one feel like a hysteric or hypochondriac.  But perhaps there is something important here that speaks to the damage our brains have undergone.  Perhaps they are "twitchier" due to the irritation MS causes.  Perhaps that's why we seem supersensitive, in good ways and bad.

It's hard to know.  But it does make me suspicious of small studies that purport to find success. And it speaks to the need for larger studies, repetition of results, before we can wave the flag of success.

Another study, mentioned to me by a dear friend, speaks of tongue stimulation to increase the ability to walk. http://www.jsonline.com/features/health/54545577.html
Interesting stuff. Myself, I prefer my tongue stimulation when shared with another. I feel this study gives me the right to explore kissing with as many people as possible (or one as often as possible) as a MS treatment. And I don't care about any placebo effect....

But hey - in all the studies that show success in MS treatment, they also talk about physical therapy and exercise regimes to rebuild muscles. And yet no one seems to look at just exercise as a treatment for MS.  Perhaps because there's no money in it?

July 26, 2010

to all those travelling for CCSVI and stem cell treatments

Oh, how I wish you wouldn't. There are so many people just out making a buck off of you. It breaks my heart. And I know about desperation about MS, really. My own life has been destroyed.


Offshore Stem Cell Clinics Sell Hope, Not Science

July 23, 2010

Every once and awhile, this disease scares me...

I know I've been lucky.  Since my diagnosis two years ago, my progress has been slow, almost benign, except for the weeks of fatigue, the more than infrequent difficulty walking, the numbness in my nethers, the confusion.
Last weekend I went to a lovely picnic put on by the local Chapter of the MS Society as part of their student summer program.  Almost everyone there was in wheelchairs or walking with tremendous difficulty.  Some used tubes in their mouths to push the remotes on their wheelchairs. Many needed help eating. It was sobering.
Today, I dragged my somewhat unenthusiastic legs over to the gym to try a workout - (I am going to beat this diabetes thing to death if it kills me!) (and I want to keep my muscles in as good shape as possible) they were dragging a bit and I was wondering if I could do it - when I passed a woman who noticed my MS walk T-shirt and said "good for you!" and explained she had MS.  She was in a power wheelchair with head support. When I told her I had MS, too, she said, "wow!  You're lucky you are still walking!". I agreed...
Coming back from my workout I joined a man in the elevator who was carrying a gym bag, so I asked him if he was just coming back from the gym, too (as I sweated profusely beside him).  He said, no, he was going later, and then he saw my T-shirt and jabbed me in the MS section of it, saying, "good for you!  I know so many people who have MS - you know Dan, downstairs?" I shook my head no.  He said "Well, he used to be okay, but he's in a wheelchair now..." I told him I had MS and he leaned forward, grabbed my sweaty head and planted a kiss on my cheek. "You poor thing," he said, "God bless you!"
I murmured something about "there are worse things..." and he said "No, this is bad enough.  My partner is so ill and she's younger than I am..."
It's like I'm getting a message from the world and the gods that yes, I should be more grateful that I am almost okay (and I am profoundly grateful), and yet, that I shouldn't count on it persisting.  Yikes.

July 20, 2010

Well, shoot.

So here I am exercising like a mad fiend, enjoying feeling my body react like a healthy person's would, enjoying the freedom of being able to walk a bit without having to think about it....
Yeah, it's been hot, but I've tried to keep cool, well hydrated, reasonable about activity.
And then it hit me - today - the awful fatigue.  It's been creeping up on me the last few days - I've been feeling more of the "nah, don't wanna"s and fewer of the "let's go!"s.  I've been crashing asleep in mid sentence and snoring the whole night through. I've noticed a sluggishness in getting up the last two days.
But today - the wall.  I dragged myself to my class this AM, worked blindly through it, came home, and too tired to eat, collapsed onto the sofa and slept the day away.  I'm still exhausted, since the joy of the MS fatigue thing is that it doesn't get better even after sleep.
I'm frustrated. And fed up. And feeling that same old sense of loss that comes whenever I am reminded that things just don't work properly in my body anymore.
And I'm reminded about why I am not at work. This fatigue was a daily thing when I was working full-time.  I was in a fog almost all the time, barely conscious, unable to remember what happened or went on, dragging myself from coffee to coffee to coffee to coffee.  And when I'm so tired, I can't think straight.  It's like I'm looking out through a tunnel - my vision blurs, my hearing seems less effective, I feel locked in to my interior.
It's a reminder, not a welcome one, but a reminder nonetheless. Life has changed forever.
Now to rest and heal and get myself back on track again....

July 19, 2010

What Causes MS? Or where do vaccines figure in all of this?

Just reading a thread on the very helpful site, Patients Like Me, where I routinely go when I want to ask a question that my doc would look at me sideways for asking.
They've been there when I wondered about which treatment to take, when my legs started spasming and no one seemed to think it was a common thing with MS, when I lost sensation.  They've been helpful, and they have additional sites for other diseases where fellow sufferers get together and share information. It's great to look up medications and see if others have been prescribed the same things, etc. Awesome resource.
However, it is filled with people who are desperate about MS and also somewhat uninformed. The latest post is filled with suppositions that vaccines caused their MS.  Now, we don't know what causes MS, so I can't be SURE they are wrong, but research says it is probably a combination of things - from low vitamin D, to infection with Epstein-Barr disease (mono) after age 15, to stress, to a variety of other things from genetic tendencies to environmental pollution. Maybe vaccines do play a part, but I hate to read these posts.
Why?  Because I'm a nurse, and I know what those vaccines prevent - diphtheria, where a thick membrane forms across your throat, disabling your ability to breathe; rubella, where infection during pregnancy results in a deaf, severely congenitally damaged child; polio, which leads to paralysis with first infection and often recurrent paralysis later in life; pertussis, which I've seen kill babies with exhaustion; tetanus, which paralyzes the lungs and can kill. They aren't minor diseases.  We've become casual about them because they are now rare, thanks to immunization.
My son is travelling through Asia and caught amebic dysentery.  He is taking pills to forestall worse infections: malaria, sepsis from any wounds, etc. But what is primarily protecting him are his immunizations, for hepatitis, yellow fever, etc etc etc. He is wandering safely through a literal morass of germs and creatures all hoping to feast on his remains. As am I, here in safer North America.
We have so many little bugs who are becoming resistant to antibiotics that immunizations are becoming even more important year by year.  I take my flu shots.  I need to get my tetanus updated (tetanus is in the soil and can getcha anytime - you need a booster every 10 years).  I can't prevent my MS or my diabetes or whatever, but I can do what I can to keep myself from being felled from diseases for which we have the prevention available. Why wouldn't I?
I wish I could finger the blame for why I have MS.  There isn't any in my family; I don't know why I have been so lucky.  Inside myself I blame a bad case of mono in College and my second to last boss, who stressed me to breaking point. But I don't know.  It doesn't really matter in the end for me, though I'd like to see the cause identified so it could be prevented for others.
But fear of vaccines has its own dangers...

July 15, 2010

Lawsy, how I DO hate the summer!

I never thought I'd get to this, after a winter of grey and grey and suffusions of grey, but I hate summer.
I hate the relentless sun, the humidity that makes my sweat just lay on my skin with nowhere to go, the hot breezes, the sounds of lawnmowers and trimmers and motorcycles and wonky air conditioners. I crave shade and spring and fall and the kind of air that enlivens me rather than the heat that makes me lie about like a pole-axed sheep for most of the day.
The plants bug me.  They are so untidy. The heat and humidity have caused them to grow all leggy and unattractive and only the weeds seem to be winning the battle for the sidewalk cracks.
I hate wearing clothing this time of year, and yet, it's expected. I hate seeing people who deny these expectations. Men, for example, who wander about shirtless.  It pisses me off, me in my bra and shirt required by law (and, frankly, common decency, as an over 50 plump woman does need to shield somewhat).  Mind you, over 50 fat men don't seem to feel the same requirement.
Every day with MS, the heat saps me more and more, to the point where I feel lucky if I want to do anything.  My brain glides into neutral. Then reverse. Then it falls off the cliff.
I loll about.  I read novels. I forget what I read. I drink water. I loll.
Making food seems unnecessary and unpleasant, so I live on grapes and slices of cheese.
I get impatient with the body and brain that seem to only want to lie about, but I'm trapped, pinned like a butterfly to a board. I force myself to exercise every morning, before my body gets the message, but crash into dead sleep at eight every evening. My feet are cramping more and more, legs twitching more, as the heat gradually shoves my MS buttons.
I long for those first few cool breezes of late August...

June 29, 2010

I want a new drug

I want a new drug, yes I do.
Huey Lewis and the News
I want a new drug
One that won't spill
One that don't cost too much
Or come in a pill

I want a new drug
One that won't go away
One that won't keep me up all night
One that won't make me sleep all day



One of the most awful things about MS is the endless piles of pills that are prescribed to you to manage the symptoms. They cost all sorts of money, they interact with each other, causing more symptoms, they rob one system to manage another.
I've fought the drug thing as much as possible and even resent taking the ones that are supposed to be managing my disease (the endlessly expensive Copaxone)
Lately, though, I've found a new drug, one that I had forgotten about.
My symptoms are relatively quiescent at the moment, so I'm doing the exercise thing, and I tell you, if you can force yourself past that 10-15 minute barrier and break out in a sweat, those endorphins are fabulous.  I could become an addict, easy. Today I was singing along as I gasped through 30 minutes on the elliptical trainer - at least until someone else came in. Sweating like anything, no glowing for this gal. It was wonderful, joyful, painful....;-)
I'm trying to be careful, keeping cool, trying to keep my fluids up - but once I start it is so hard to stop....
Love it.

June 28, 2010

Clinical Trial Testing New Multiple Sclerosis Treatment to Launch in Buffalo

Clinical Trial Testing New Multiple Sclerosis Treatment to Launch in Buffalo
Looks like a good study protocol. Hope it shows us something of help!

Myelin repairing itself - wahoo!

Protein Helps Mitigate the Effects of Multiple Sclerosis

As well as the marks of other conditions

June 8th, 2010, 12:42 GMT
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Image showing demyelinization damage on a nerve cell
Enlarge picture
A group of American investigators from the Washington University School of Medicine (WUSM) has recently developed a new approach to mitigating the devastating effects diseases like multiple sclerosis leave behind in the brain of patients. The science team says that a protein involved in building the cortex of children and infants could have its action hijacked, and then used to restore the mature brain to its former potential. The finding could have significant implications for a large number of people suffering from MS and other neurodegenerative conditions, the experts say.

The disease appears when myelin, the protective layer that ensures the insulation of nerve cells, is disrupted. This causes the electrical signals traveling between neurons to lose their intensity, and become scrambled. “In MS patients, myelin repair occurs inconsistently for reasons that aren't clear. Understanding the nature of that problem is a priority because when myelin isn't repaired, the chances that an MS flare-up will inflict lasting harm seem to increase,” explains WUSM associate professor of medicine and of neurobiology Robyn Klein, MD, PhD. The scientist is also the senior author of the new investigation, which is detailed in the latest online issue of the esteemed journal Proceedings of the National Academy of Sciences (PNAS).

The WUSM team conducted its recent study on a batch of unsuspecting lab mice, which were genetically modified to act as a model for multiple sclerosis. It was discovered that a protein known as CXCR is directly responsible for fixing the myelin sheet covering the neurons. The finding was made possible by the fact that the group did not use a standard MS model for the research. In past works, the actions the brain took in repairing itself were obscured by the response of the immune system. The problem was circumvented through the use of the drug cuprizone, which promotes the death of myelin-forming cells in the mouse brain.

The results were “a surprise, because the main thing CXCR4 has been known for is its role in forming the brain, not healing the brain. But we did know that injury increases the number of brain cells that make CXCR4, so it wasn't an unreasonable place to look,” Klein explains. “We do not yet know if this myelin repair pathway is somehow damaged or impaired in MS patients. But I like the idea of turning on something that the brain already knows how to make by itself, allowing it to heal itself with its own molecules,” the expert adds. The WUSM team is now about to begin a new set of investigations, in which they will look at this protein, its actions, and its potential for a new drug in deeper detail.

June 23, 2010

Oh the joys of being able to move!


I feel bipolar. On the days when my MS body won't cooperate, I am grouchy, depressed, hostile, unmotivated.
On the days when it works, the sun comes out and I spring about, filled with the energy of muscles screaming to break free.  For the last three days I've managed a 30-45 minute aerobic workout, loving every minute.  I even did the deadly Wii Active today (sure, just the easy low impact one, but still!), breaking into a sweat so prodigious I daren't be seen for at least a half hour or so til it all stops pouring out of me. I can feel my tummy getting tighter, and it fills me with joy. And my legs remain strong, my balance is good (until after the exercise, when I develop a listing to one side like a sailboat tacking upwind).  My lungs feel open and exercised and aerated, my brain is functioning better, it's all wonderful. And I feel less like smoting anyone who annoys me...
I get done with my workout and immediately start thinking of doing another, my mind and heart willing, my muscles and nerves ever so affirmatively NOT. But I try and work in a walk as well later in the day, just because I can, and there are all those days when I can't that my muscles have to make up for.
And then, at night, when I crawl into bed, the pain starts - the muscle spasms, the contractions, the hip flicks. I try not to whimper, but it hurts, damn it, especially when my back flips my legs and they are pooped from the day. Fortunately, I am usually so tired that I fall asleep before too much whimpering ensues, but I'd sure as heck like to know why the spasming starts when I am at rest.  And maybe how to forestall it. Maybe I'll find out when I see my neuro on Friday....
Meanwhile, I'm riding this active horse for as long as my body will let me.  It feels so GOOD! And I can't help but think, if I exercise now while I can, maybe I'll get a grip on all those other monsters that have come to live with me - overweight, diabetes, high blood pressure...of course, the main problem is that when I exercise, I get very very hungry....;-)

June 19, 2010

Help Mii!

Ah Mii.
Any of you who read this blog know I love my Wii Fit. It's perfect for we wobblies, as it helps balance us, and adjust its expectations day by day so we need not die from over exercise....

But I've got some issues.  First of all, I created my Mii, designing it short and round, only to get on the board and have it readjust me shorter and rounder.  It's harsh.

I got over that shock - after all, I'm still cute on the picture despite my poundage - but then came the weigh in....

The line flows upwards, the BMI is over in the red area, and my Mii shoves out its not insignificant tum and wiggles it while the program says "That's obese!"

Okay, okay, I get over that and even learn not to take the cracks about the balance test not being my strength to heart(it was a bad balance day) and not to cry at the days when my Wii fit age trots up near my real age...and sneer back at it when I haven't exercised for a day and it gives me grief...

Unfortunately, now I am trying to lose weight somewhat dramatically as have diagnosis of diabetes to add to the thrills of MS, and the scale part is important. But it varies extremely depending on where on my carpet I place it. One day it soared by 4.5 kilos!!!! I know water retention is one of those things we wimmen have to cope with, but migods - ten pounds of water?  Unlikely. I hoped.  I rearranged the board.

"Ooh" it cooed when I stepped on it. "Your weight has changed.  Continue?" I continued. I still ended up 3 lbs heavier than I'd been the previous day, but at least I didn't feel like I needed to lie down and die.

Now, though, I don't trust it. I test my weight at least three times during a session. I'm becoming obsessed. It tells me my weight will vary by kilos depending on time of day...it mocks me with its red line and tummy wriggling...it nags me to exercise exercise exercise to get that posture of mine better, alternately praising me for excellent posture and telling me I wobble (dang left ankle) and need to work on my core. It's like an inconsistent parent, giving conditional love.

Help!

June 13, 2010

So, how does one know? Work and MS...

I've fought hard, filled out many forms, suffered life-threatening papercuts, and taken on the role of a disabled, can't work person.
Always, in the back of my mind, despite blinding fatigue, pain, leg spasms, cog fog, etc., I've felt a bit of a fraud.  After all, I don't need a cane all the time. I'm not confused all the time. I don't sleep ALL the time (though it often feels that way). I've only had maybe three flare-ups in the past 6 months.
So I commit to volunteer things, needing a purpose.  And then I often can't do them thanks to the fatigue...
But would I be able to do them for pay? That's the question. Or would I swiftly descend into the mad state I was in before leaving work, where, exhausted and stressed from trying to cope, I became hyperemotional and inappropriate?
Of course, there were issues there.  One was an employee, a doctor, who abused me every day, verbally. He even sent his patients in to abuse me. The ones that survived his care.  He was a rotten doctor and a bitter man, and he made my head spin with all that he pulled.  I wanted to fire him. But who fires a doctor, when they are scarce? Add a stressful job and high expectations by myself and my boss, and life was pretty tense.
Could I survive a "regular" job? Could I even get a regular job, after being off for a year on LTD? Would I endanger my LTD by trying?
My head is spinning.
I can't help but think that some people manage to work on less brain power than I have on an average day, even with my MS. And the constant pain I have - well, it's been around for years. I'm used to it, and it's only occasionally it grabs me by the gut and makes me cry out. The fatigue?  Well, there ARE meds for that.
But MS is a progressive disease. I've already noticed that my legs are much more spastic than they were a year, two years ago. They cramp when I stretch 'em, and I don't like walking, though I wish I could. It scares me to head out when I know the return journey will likely be pain laden and torturous.
But should I live my life afraid of what may happen?  Or should I push through and devil take the hindmost?
I have a neuro appointment in 2 weeks to evaluate my latest MRI, which I hope will give some explanation as to the increasing spasms in my legs and numbness in my nethers. I'd like to say I may get some guidance there, but I dunno. Neurologists aren't the cuddly type, and will likely not have much to contribute.

June 11, 2010

my brain aches....

Just had phase two of my cognitive testing for a study being done here in Ottawa - it involved one testing session, a second two weeks later, and a third in three years. It's supposed to evaluate cognitive changes in MS over time.
In some ways it was reassuring - I can still add most numbers, can think of new ways to combine sets, can tap the space bar at a certain rate. I failed utterly at the "reorganize the discs on the pegs" task and realize I need more time in kindergarten and soon before my abilities to grasp spacial solutions leave me entirely.
Remembering words, numbers, story elements - tasking! I had to close my eyes and block out all other stimulation to focus.  Wonder if I could do this during meetings at work?
Of course, got home and my blood sugar was a mere 2.8, which might have accounted for some of my fogginess.
It's difficult tracing the effects of different chronic diseases, and also I am wondering about the effects of medications and the causation of various troubles in my body. Where does one disease begin or end?  Where do the medication side effects become enough to discontinue them? What causes what?
I am so confused, and it's not just from the testing....


Curious about how you'd do?  Try going to this test site -there's a quick little test you can do that gives you a bit of an idea about some of what I did. http://www.neurology.ufl.edu/memory/cognitivetest.shtml

June 9, 2010

Saving all your foodstamps and burning down the trailer park

http://www.youtube.com/watch?v=s8zn63ADiIE


Soy un perdedor
I'm a loser baby, so why don't you kill me?







Sometimes, with this little MS thing, you feel both like a loser, and angry enough to burn down trailer parks. 
I can't even begin to tell you how TIRED I am of being told I look fine, when I've managed to drag some sensible self out of me for an hour or so in a day.
I feel frustrated that I have to explain and explain and explain, even to those who know me.
I'm tired of trying to learn the lingo for being taken seriously by doctors and neurologists.  
I'm fed up with dealing with the probable side effects of medications that may not really be helping me after all, and if they are, well, it's not by much.


I imagine everyone with a chronic disease, especially if they are outwardly semi-vertical and smile, deals with this anger and frustration at not being heard. On the one hand, we're PISSED that we were given this wee challenge to mess up our lives - on the other hand we are FROTHING at the mouth about trying to explain it yet again to someone. Or excuse ourselves, or explain why we can't do something or whatever. Grrr.
Just saying....
Seriously, I don't feel like a loser, nor do I want anyone to kill me.  But there's something in that song that calls to me. Perhaps that's because when I talk to health care professionals, I feel like I should be singing it to them...
Whaddya think they'd say?

churchsign_loser.jpg

May 25, 2010

feeling growly

I truly hate being at the beck and call of the disability folks.  Generally, they have been kind, relatively friendly, and caring. But they can turn on a dime and I find it terrifying, especially with this disease and its changeability.
Lately I get the feeling they think I am malingering. And it terrifies me.  They can pull my payments anytime they choose and I am out on the street. Literally.
I'd write more, but it's just too damn upsetting to think about.
Nothing like having a progressive, life changing disease that isn't QUITE enough to make me be considered as disabled. Because SOME days I can move and think.

May 21, 2010

The spotted dogs

Every once and awhile, the reality of having MS and the essential and existential traps it puts one in sends in the depression dogs - not necessarily the black dogs - but the ones with black spots.
Like life.
I hit such a black spot recently. I had had a major flare up of my MS, such that walking wasn't something I could really manage for more than a couple of feet, giving me spasms and twitches and fatigue that knocked me back on my back slumping into that gentle pudding of afternoon slumber...
For the first few days, I was okay with it.  I mean, I've had bouts before, but I'd been lucky - I could usually count on being able to pull myself out in a couple of days, gradually start exercising more, get my life back on track, empty my fridge of the things that had gone mouldy, you know, catch up.
But as the days dragged on and on, I got impatient, angry with myself, petulant, and the spotted doggies started to creep in from the corners, demanding food and a scratch under the ears. I'm allergic to them, so my eyes started watering at the slightest thing: the whine of a Midas Muffler commercial, songs on the radio with words like evening and night and lonely and loss, the delicate ruffles of petunias.  I started getting annoyed, plucking said flowers off and cursing their stickiness, thrashing things around in my fridge, throwing papers around, kicking the spotted dogs til they whined louder. Ineffectually, since my throwing arm and kicking leg were out of commission.  Which made me madder. It's like arguing with a spouse and throwing a tea towel at them.  Lots of flutter, no effect.
I'm a terrible patient, largely because I am terribly impatient. I don't like not being able to do things. I find it unjust.
Eventually, when the dogs get too large or their spots threaten to swallow up what little brightness covers their hide, I contact my "helpers".  They try to help, but they can't give me what I need.
I NEED to feel useful, important, meaningful.  I need to have something to do with my day that gives me a feeling of accomplishment. It's tough to get that done when even moving about takes more energy than you have in the bank. And there's that fine tension between wanting to help others and realizing you just don't want to spend the energy doing it.
I go to a church.  They are lovely people. But now that I am a member, they expect something from me. I don't have it to give, not even the little things like cooking squares. I volunteer, but find I am barely able to push my efforts forward. I fight attaching myself to anything, in case I might be required to do something for someone.
So am poised between the dogs and the wall. Trying gently to push them outward, but not having much effect...

May 14, 2010

Say WHAT?

Last November, the company asked the FDA not to approve any ANDA for Copaxone until the product is fully characterized. It further maintained it isn't possible for a generic applicant to show that its product has the "same active ingredient" as the drug "because neither Copaxone nor any significant subset of its polypeptides has been fully characterized, and because it is unknown which of Copaxone's potentially millions of protein-like polypeptides are clinically active and responsible for its therapeutic effects in reducing the frequency of relapses in patients with relapsing-remitting multiple sclerosis," according to the FDA's response, available at regulations.gov.

Read more: http://www.fiercepharma.com/story/teva-talks-healthcare-reform-copaxone/2010-05-13#ixzz0nwH6NvO5



Ya gotta love being a guinea pig. I've just found out that my dear copaxone may be behind some of my high blood pressure and liver abnormalities. Not that anyone knew about this, apparently. It's endearing to be on medications which even the developer has no idea about how they work. It's reassuring to think they don't actually know WHAT IT IS MADE OF. It's such a pleasant thought to inject this stuff into my body every day while taking a whiff of optimism juice, hoping it will work, having no idea what "working" really means.


I've had experience with this before. I "did" Vioxx for pain before. I was on Effexor, queen of the iatrogenic disease causing drugs, which also remains unexplained as to how it does its magic. I was on Lipitor, until I got leg muscle spasms (might have been MS, now that I think of it), and put on ASA until they realized it would more likely kill me than save me.


And now as I step into my second half-century of life, as medically managed as anyone can possibly imagine, I'm offered these medications, told they are good, given my prescriptions and told to smile and be a good girl and take them. 


Yeah, I suppose on balance they are probably keeping me alive. But really now, folks. Couldn't I just chew on some nice alfalfa?

May 13, 2010

MS and lust, lethargy and lipgloss

Okay, I'll admit it.  I'm a fifty-one year old who has rediscovered the joys of lust after a long marriage where sex was the only medium used to indicate displeasure (unfortunately, ex didn't get that message). Let's just say it was a bit sparse near the end, say the last five years or so. (or 10)

One of the best best things about leaving my marriage was meeting a lovely man that taught me that it wasn't ME that couldn't respond, didn't like touch, etc.  It was the situation that cooled me off. I was overwhelmed with joy and sensation and still love the guy, years later, though he is no longer part of my life.

So I find it terribly unfair that MS has sucked away my sensations in certain, ahem, key areas. Not that it has slowed me down. I argue to my friends that I am so fatigued from the MS that there comes a point on a date where it is just easier to lie down and do something that doesn't require much chat. It passes the time, remains fun, provides physical activity, I don't have to be witty, and the men seem to like it.

It's a bit dangerous, though, as it becomes my fallback position (as it were) when I am tired at the end of the evening. When I was dating more, I'd go out for dinner, say, go for a walk, wander about, then feel, really, I HAD to lie down right away.  Y'all with MS know this feeling.

The men - well, they were only too happy to keep me company. Add to that my main sensations left are located in my lips, and after a few kisses, well, life became rather scandalous pretty quickly.

But, I reasoned, if I don't use it, I might lose it. And, like eating chocolate when I knew diabetes was pending, I felt I should pack in as much as I could before the boom fell and I wouldn't be able to enjoy it any more. Well, they do say MS impairs some cognitive functions, too...

Alas, even using it hasn't helped me not lose it. MS marches on, and now I am a seriously lascivious woman trapped in a body with seriously impaired sensation. I tried to tell my neuro about it and had to revisit it a lot before he (always he, always he) would listen.  I'll just bet if I'd been a man and told him I couldn't get it up, he'd have been all over it with ideas.  But it remains that women lacking sensation is still deemed rather unimportant, despite so many studies talking about how sexuality is essential for intimate relationships, self-esteem, bonding, etc.

I'm still interested, and thank heavens I am in a relationship now with a kind, loving man who seems willing to explore options, but the fact remains there are times when I can't feel him touch me. And no matter how aroused my mind may be, if I can't sense his touch, my body doesn't respond. It's frustrating. I miss that thrill of neurons firing up and down my spine and tickling my lust centre. I miss the feeling of an aroused body. I miss the increasing heartbeat, the warmth speeding to the skin, the hairs raising. It often doesn't happen, and it's definitely not his fault.

It's tempting to give up, but I've never been a quitter...and I'm not quite ready to retreat to memories of my explorations.
But I've had to give up chocolate.
Unfair.

May 2, 2010

Catching multiple sclerosis before it strikes

Catching multiple sclerosis before it strikes

An interesting study (smallish but intense) about the blood markers that indicate MS, perhaps indicate how "fresh" the disease is.
Could be helpful especially in studying progression and treatment of the disease - and might explain how some respond to treatment and others don't - perhaps their disease is "older" even if less severe.
More fascinating research that is adding to the puzzle....

May 1, 2010

and now, from your friendly jellyfish...or maybe not...

So apparently sweet furry animals aren't the only creatures we should be grateful to for MS treatments...still, the thought of being stung by these guys (or bees, another selfless creature in research) is more offputting than my daily copaxone shots...


Chicago -
Madison, Wis (May 1, 2010)-  Quincy Bioscience, the biotechnology company responsible for the development of apoaequorin as a neuroprotective compound, is sponsoring the National Multiple Sclerosis Society in their fight to raise awareness through the Multiple Sclerosis MS Walk in Madison, Wisconsin on May 2.  MS is a chronic, often disabling, disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves.

Quincy Bioscience staff will be presenting and distributing important recruitment information for the MS HOPE Trial, a recently launched study by Quincy Bioscience.  MS supporters can stop by the Quincy Bioscience booth to learn more about MS Hope Trials and how the jellyfish protein apoaequorin may improve the quality of life for those with MS.

Mark Underwood, president of Quincy Bioscience became interested in the jellyfish protein while majoring in Psychology at the University of Wisconsin-Milwaukee.  After reading an article that linked the stings of jellyfish with the symptoms of MS, he decided to pursue this study further.  Underwood explains, “The importance of finding answers is at an all time high.  Events such as these can bring the community together to effectively raise awareness of MS and we at Quincy Bioscience want to bring hope to the MS community.”

Quincy Bioscience encourages the community to come out, raise awareness and support the cause for Multiple Sclerosis.  The walk will be held at Warner Park in Madison, WI on Sunday, May 2, 2010 staring at 9 a.m. and is open to the public.

About The Wisconsin Chapter of the National Multiple Sclerosis Society
The Wisconsin Chapter of the National Multiple Sclerosis Society is a community of individuals who are committed to achieving a world free of MS. The Chapter helps over 10,000 individuals throughout 68 countries throughout Wisconsin impacted by MS to move their lives forward. The Wisconsin MS chapter provides comprehensive support services and educational programs to people with MS, their family and friends, and raise funds locally to support the National MS Society’s research initiatives.

About Quincy Bioscience
Quincy Bioscience is a biotechnology company based in Madison, Wisconsin and is focused on the discovery, development and commercialization of novel compounds to fight the aging process. HOPE Trials is the research arm of Quincy Bioscience.

The company's products focus on restoring calcium balance related to neurodegenerative disorders and other destructive age-related mechanisms. Quincy Bioscience has developed health applications of the jellyfish protein apoaequorin for dietary supplement.

Picture credit: http://lesleehorner.files.wordpress.com/2009/12/jellyfish2.jpg