December 11, 2012

On the perils of accepting charity

Job accepting charityWilliam Blake

I am in a frumious mood. My own fault. I went to a charity MS event today. Not a fundraiser - a "social" event. One of the Anglican churches here has been holding lunches for people with MS for the past 40 years - an astonishing and kind commitment but ever so slightly weird. 

Why? Because they don't speak to any of the attendees and in fact treat us all as if we are mentally feeble. I had one man practically walk with me to the washroom to ensure I could understand the Men and Women signs appropriately. Argh. 

A church pianist sort played hearty Christmas music on the piano to add context but she played too loudly for anyone to speak with each other, especially MSers with weak voices, sort of like you'd do at a senior's luncheon where everyone is senile or very hard of hearing and sits quietly and drools through the concert. She did a good job but had a different songbook than any of us so we always ended the carols in different places. 

They kindly made food suitable for people without teeth and brought around broken up bits of fruitcake that were passed to us in crumbly small amounts. And they poured us 1/2 cups of coffee so we wouldn't run the risk of spilling it or burning ourselves.

Santa came, and with him a man dressed as an elf, who gave a 15 minute long speech, crying all the way through, about how he loved wearing the elf suit for Christmas Daddies and etc and how "all your happy faces" made it worthwhile. The happy faces got rather stiff during his emotional session, which I guess he does whenever he wears "the suit". He does make a good elf, if a somewhat bipolar one.

We'd taken a ride from friends so we were hopelessly trapped there for the entire event.

There WAS a wonderful man with a fantastic voice who ensured everyone sang Christmas Carols, so that was fun. I suspect he is the parishioner who pushes this thing - they said at the beginning that the usual people didn't want to host it so the men's club did. 

And so all the men stood together over in the corner staring at us while the women toiled in the kitchen, as usual with church things...And everybody brought $5 gifts to share. I was hoping for chocolate but instead got a shiny necklace and two hand towels in pink that said "Love always persists". With bunnies and carrots embroidered on them (not by hand).

All in all it made me CRINGE with horror at the thought of being in a senior's home where I would be pushed out to one of these festive events in a wheelchair and forced to endure and smile through all of this SHIT every few days until Christmas. I swear to god I am taking myself out before that happens, or I'll have to check in with a weapon. Or a few.

God, I pity the poor. It occurred to me that this is what usually happens at charity dinners, where all the good folk, hardworking and with their hearts firmly in the right place, cook food and serve it while watching the poor/old/feeble/sick and hoping they are appropriately grateful. Egad. And for the first time I saw the hell that ongoing disability could be - endlessly going to these things for a "day out" until I perish in the attempt to gulp back another shortbread cookie made with rancid butter. I'd rather get a cash gift and spend it on liquor and sin, with no one watching to see if I choked.

I really don't think I have the intestinal fortitude to be a charity case. How DO they do it?

Exhausted from trying to be nice and failing miserably. 

December 7, 2012

Inspector Dreyfuss

Well, so, here I am in agonies with trigeminal neuralgia, going around grabbing at my head like John Cleese in the Fawlty Towers episode about the Germans and unable to think without shafts of pain shooting through my head, so I go to see my excellent doctor and she prescribes Gabapentin for me.

Cool. It stops the agonizing pain.

But now my left eye is twitching like Inspector Dreyfuss in the Pink Panther movies and I feel vaguely piratical as my eye closes down after twitching. And today, I developed nystagmus in my right eye, so my left eyelid twitches and my right eyeball twitches.

I'm beginning to look vaguely possessed.

November 20, 2012

October 22, 2012

Arggh - who do you TALK to?

So here's the thing.
I'm losing a great deal of my ability to walk.
This could be because I haven't been as good as I was about going to the gym. Or it could be progression of my disease. Or maybe I've been too bad about my meds. Or I could have something else going on.
So I call the MS clinic.
They tell me to test for a urinary tract infection. Never mind that I have only ever had one of these in my lifetime and that my symptoms are more on the urinary retention side of things. No infection symptoms. Once you've had one of those, well, they are noticeable.
But still I will smile and go forth with my little jar of pee to see if that's the problem. Of course it won't be.
Then I called to Copaxone people today to find out about whether I could skip my shots during my trip to Cuba.
It's going to be a pain to carry needles across that border and keep the medication cool and remember to inject myself every day. And then carry the syringes home. And yes, I do have a "permission to carry" letter, but it isn't in Spanish.
"Oh no," she says. "You have to take it every day or you will get more relapses!"
Well, see, I don't have relapses, so to speak. I just slip gently down, losing a few steps here, having more spasms there, going numb bit by bit. I've been lucky enough to never need hospitalization.
And truth be told, I've missed more than a few of my Copaxone doses.
So I said, well, it doesn't seem to be doing anything for me, anyways.
And she said, "oh you won't feel it doing anything. You'll just be less sick than you would otherwise be."
Well, there's the rub, isn't it?
You can't sense any benefit? Well you still have to take it because the alternative is thrust at you like a threat if you even mention it.
What a wonderful marketing trick. Take it, you won't notice anything. Don't take it and you may completely crip up. Wow. So, if they figure out that your symptoms are getting worse and you dare to mention you have missed a few doses, well, you know whose fault it is going to be. Not the drug company, whose meds don't slow progression, no no. It will be my fault, of course.
I even asked her if I could double up on the dose for a few days before - they are doing a study now looking at taking double the dosage for three days a week as vs the same dose every day.
"Oh no," she said. "That study hasn't been finished yet!" But given that they prescribe the exact same dosage to a 99 lb kid and a 250 lb man, I can't imagine doubling up the dose would be a problem, risk wise. And given that it doesn't slow progression, what's the big deal? The nurse told me it did. Studies differ.
So who do you speak to to get an answer?
Your MS clinic, who are overworked and much more focused on the really ill and their research subjects?
Your drug support nurse, whose main role is to keep you hooked on their drug (though my usual nurse is not like that, thank heavens, or at least is open to discussion)?
Your peers? Sometimes that helps, but there's a lot of bad advice out there.
Research? If you can find it and understand it...but remember the publication bias and the funding issues that lead to the tendency to promote big pharma solutions compared to other things...
It's lonely trying to figure out what to do when living with a chronic disease that isn't understood.
But sometimes, you just wanna...

October 7, 2012

Pain and MS, including those with an axe to grind

Oh legs. Legs'o'mine. Couldja leave me alone just for a leetle while?
I still don't get it - why is there so much numbness plus so much pain? Surely they should block one another out?
But no, here I cringe, legs repositioning every few minutes while I struggle to feel my fingers on the keys.
I do wish I understood this disease better. I wish anyone understood it better.
And thanks, CCSVI advocates for once again sending me an unnecessarily long and gruesome post to my CCSVI, the terrible temptations post. Every few months you send me one. It's tedious.It's advertising, pure and simple. Usually I delete the comments, made as they are by some mailing robot that spasms, like my legs, unexpectedly, and shoots out blather.
I've decided to allow this one because we are at the point of doing a study here in Canada that looks like it will be carefully designed enough to actually give us some answer, unlike all the observational studies done before. This study will assign patients with venous "obstructions" to control and experimental groups and do mock procedures on the controls. Everyone involved will be blinded as to who got what procedure. then, a year later, the groups will be switched, so everyone will end up with the procedure (important as it is an invasive experiment) and the same person can be evaluated throughout the experiment for effects. I don't know if they are following the procedures with physical therapy, my own personal thought about how the benefits are accrued from the procedure.
So in two years, we should have some hard research results.
Best thing is that the doc who is leading the study, while one of THOSE( neurologist) types, is also one of the most caring, considerate, and thoughtful neurologists I've happened to meet. I've worked with him on the Canadian MS registry project through CIHI and he is a good man, not given to self-aggrandizement, prone to listening to ideas, and open and easy to speak to. I'm hoping the centre in Montreal is going to be led by my other favourite neurologist, another gem of a doc. I'd mention their names but I don't want them to be swamped with people demanding care to the point they burn out. Nice neurologists are not common out there. tremendously smart and knowledgeable ones, yes, but pleasant and friendly, not so much.
Perhaps, unlike my numbness and pain, niceness and smartness don't normally occur together.
But in some lucky or unlucky instances, they do.

September 14, 2012

Doin' Drugs - 2

Anyone who has dealt with MS knows it is basically a game of gradually increasing piles of drugs.
Disease-modifying Drugs (DMDs) - which we think do something.
Anti-spasm drugs- which may not help spasms until you are passed out
Drugs to keep your sphincters closed
Anti-depressant drugs: which make you dizzy and confused
Anti-pain drugs: which knock you out
Drugs to counter the effects from the above drugs, which include vertigo, incontinence, weakness, sadness, poverty, etc, etc.

Well, maybe not those last two...

It is always tempting to just toss the drugs away and try to manage the illness without them. A few muscle spasms will teach you to rethink that; the inability to walk will make you grab your DMD needle like a heroin addict and gratefully shoot up in the hope that you can still stagger a little while longer.

And then there's the illegal drug, that always makes me feel like I'm making a pumpkin spice latte or something. The one requiring grinding and special machinery and inhaling. The one that, surprisingly, works, eliminating muscle spasms quickly, without the cheery side effect of me peeing my pants, a freebie with the other antispasmodics.

But I need special permission to have that drug. So I'm starting the effort, with the support of my doc, to get some legal stuff. It's a bit frightening, given that our current government finds it more evil than outright murder. I have to send them passport-type photos, and become officially registered, which I wouldn't have to do if I had a long gun. Odd, no?

Just sayin'

August 29, 2012

Mad Sow, Mad Cow

Some of you blog readers may wonder why I refer to the blog as "Musings of a Mad Sow". No, I don't think of myself as an angry pig, though, honestly, if I gain any more weight...
No, it's all about Denny Crane on Boston Legal. Right before I was diagnosed, I got hooked on the show, particularly enjoying when Denny would say something completely irrational and then gesture to his head and say, "Mad Cow", as if that explained everything.

One of the signs of MS in me was the loss of the barrier between my interior and exterior monologue. You know, that inner voice that says inside your head, "This guy is a jerk", while on the outside you smile sweetly and say all the right things.
I was in management, so my straight talking almost led to me being escorted off the property
It was quite agonizing, really. I'd realize that my mouth and brain had betrayed me and try to retrieve or patch things up, but often it was simply too late. So, since MS had the right initials, I decided to try to redirect my mouth by pointing to my head and saying "Mad Sow".
Oh how I wish it would work.
For the most part, now that I am less stressed and have slept adequately, my mouth is under better control, but it's not anywhere near perfect. I am much more intolerant of foolishness than I used to be formerly and need to remind myself that being part of any bureaucracy is NOT a good plan. And yet somehow I keep ending up being part of them.
And my mad sow keeps putting her little hooflet in.
Like many of us with invisible disease, my physical symptoms are small - except for numbness and an inability to walk further than a block or so. But the mental ones are glaring, at least to me.
I was "gently reared" as they say, and I cringe at being thought rude. My dad didn't raise me that way. But wherever those lesions nestle, they've liberated my tongue and tied up my Miss Manners. Maybe I need to follow that old African tale and dig a hole and yell my true feelings into it. Maybe then the sow would be appeased.
Somehow I doubt it.

July 15, 2012

A Helpful Book

As a youngish and dating woman with MS, one of the things that has filled me with the most despair over the past several years is my loss of sensation in the...ahem...sexual areas. I consulted with my docs, whose recommendation was to place a bag of frozen peas over the...ahem...area in question and that that would help me feel increased sensation.
Well, I dunno about you guys, but frozen anything DOWN there doesn't sound too enchanting for me or the fellah involved. As one friend said, it's like going swimming in the Atlantic Ocean - cold at first, but okay once you're in...
Now, other than developing a jaundiced eye whenever I see a bag of frozen peas in the market, I haven't had much success with that advice. A friend of mine (who works with people with disabilities and their sexual health) and I got to talking. What if we combined the power of her knowledge of everything sexual and battery operated, and my nursing knowledge and the experience of someone living with MS, and we put together a helpful book?
Not a deadly boring one, but a light, useful one, with advice and drawings and some laughter and fun. That. we figured, could be a help to other people like me.
After all, MS is being diagnosed earlier and earlier, and it sounds gruesome to be sentenced to years and years without any idea of how to have a rewarding sex life. We deserve one, no?

But maybe that isn't what's needed. So we thought we'd ask you. In a short little survey, with no chance we can identify you, compiled on machines somewhere in the deep dungeons of the internet, impossible to trace. Well, maybe not completely impossible to trace, but I've got better things to do than find you. There are all those other frozen veggies to experiment with...

Here's the Blurb:

Dorothyanne Brown, a person with MS, nurse, and epidemiologist, and her
writing partner Karen Kalinowski, a Natural Health Consultant and Sex and Kink Awareness Educator, are collaborating to create a resource for people with MS and their partners about sexual intimacy. 

We've created a short survey, ten questions, to get a feeling for what your
needs are as a person with MS or a partner of a person with MS.

The survey is completely anonymous. We have no way to figure out who answers
it, we plan no cross linkage to any database or physician services. 

It will help us create a resource that will be most useful to you. 

Just click on this link and you will be taken to the survey:

Please share widely with others with MS or their partners. Help us create a resource that will work for you.
Questions? respond here or email
And thanks!

June 18, 2012

Why going to the gym is so entertaining, or not...

I've been going to the gym seriously for months now. Three times a week, give or take, an hour at a time, weights and machines and stretching and all that stuff. I usually come home and collapse, body in spasm and totally wiped out. The thing with MS is I don't get to progress upwards like "normal" people - as I exercise, I feel like I should be getting better, stronger, quicker ("We can remake her, better, stronger...").
But it just ain't so. One day I cheerily work through a 30 minute elliptical session without dying. The next day I can barely do 10 minutes. I'm trying to increase my walking capability so I can go on this boat cruise in Newfoundland - which involves a 3 km walk through moose and bug infested territory. I can deal with the bugs, but outrunning a moose might be challenging, and I really don't know how they'll react to my walker...but the views look fantastic and I really really wanna go. So I struggle on, pushing my unwilling cramping muscles through yet another session.
Today I got extra exercise plotting the demise of an exerciser on one of those bouncy machines. She was doing extra knee lifts and swinging her arms around in circles and punching up in the air and lacked only the leg warmers to pass for Olivia Newton-John getting physical. She was working on the machine at level 15 and increasing the level every few minutes.
I wanted to push her over.
Just a little bit.
She was so damn perky.
She even had perky HAIR, for gawd's sake. I instantly hated her with a vile passion matched only by the vileness of my sweat as it flattened my non-perky hair to my skull.
What made it even worse is that my favourite gym guy, the one with the sexy accent, was flirting with her. The flirting was bad enough, but what I really envied was that she could do her high fast stepping while swinging her arms and listening to music and flirting back, without falling over! How the heck?
I was falling over walking on the treadmill. Slowly.
Totally annoying. I much prefer the overweight older men who sweat honestly and suffer along with me. We at least have the honour of our suffering.
Couldn't kill her lest I lose the fondness of the sexy gym guy. So I pretended to find her funny while I turned a delicate shade of green. Why the hell didn't I use my body more when it worked properly?
Ah well, too late, she cried, and waved her wooden leg (as my parents-in-law would say). I'm obviously going to have to find another reason to keep going to the gym. Hmm. Maybe this would work...

June 12, 2012

How exciting the brain...

I always was fascinated by the brain. I remember in grade 12 Biology, I dissected a fetal pig. The day I cut into the head I felt such reverence. Already I was totally awed by how well-arranged the body was internally, but the brain, even the fetal pig brain, was so humbling.
It seems oddly appropriate that the disease I got is all about the brain. It would be so boring to have a sore leg or something. Instead I get to wallow is the multiple glories of a magnificent system going awry.
"It is the most mysterious part of the human body, and yet it dominates how we live our adult lives"
TED remix about the brain

June 7, 2012

Why all the fury about CCSVI?

Whew. Apparently there will be an announcement about CCSVI made by the NL Health Minister at noon today.

Instantly the chatter lines light up. The CCSVI advocates are hollering again. They yell, they tirade, they do personal attacks on neurologists, the MS Society, the people who work at the MS Society, drug representatives, cardiologists, radiologists, that guy that's walking by the window, anyone who doesn't eat pasta, that annoying mosquito.

It's like as soon as you mention those four initials, you've poured alcohol on a fire.
From my way of thinking, I don't find such ranting persuasive. The pro-CCSVI people are sounding more and more like a cult of late.

We've seen this before, folks. Remember laetrile?

I don't know what will transpire regarding CCSVI and MS. I hate the medications we have to take that we aren't sure will do anything and that cost us a lot in terms of money and side effects (potential and present). I hate the fact that I have to take medications at all. I particularly hate that Copaxone has been fined for overcharging and they, TEVA, just wandered out of the discussion, grinning and patting their fat wallets. While gesturing with their other middle finger.

(But then, I have high cholesterol, too, and pay into Crestor's vast resources while eating potato chips. Thus supporting TWO evil industries. I feel kind of silly grousing about big pharma when I lack the self control to avoid them.)

But interventional radiologists are making money on this, too. They have better press at present, true, and maybe that's because a great many neurologists are, unfortunately, just not nice. Or they are frustrated dealing with a chronic disease for which they have no real hope or answer, despite years of research on it. Brains are, apparently, complicated. Immune systems even more so. Who designed this system, anyway?

In any case, the jury is still out. We're devoting resources to investigating this CCSVI thing, that, unfortunately, doesn't seem to be coming back with positive answers for many.

And any who raise a cautionary hand are being demonized.

This is a confusing disease. It's awful and hopeless and expensive and leads many to suicide. How about stepping back and stopping the attacks, eh, CCSVIers? I, for one, would be more tempted to listen. Right now I wish the whole thing would go away.

Rain, rain, go away...

Well, to be fair, the sun that's been hiding for the last several days is actually making an appearance today. I love feeling it on my skin as I curl by the windows.

No, it's the internal rain that's getting to me.

Battling depression isn't pretty. When part of it is due to organic brain disease, that's even more fun. Sometimes I don't even know who I am any more.

I'm disorganized, I overspend, I do silly things with my short term life choices. Sometimes it's a bit scary as I try to negotiate around the me and me-but-messed-up parts in my head.

I probably should have a keeper, someone to be accountable to. But in my twisted mind, I don't want anyone to play that role.

I feel a bit like a badly behaved horse, trying to fight her way out of a stall, but resisting the halter that would lead me there.

I wish they'd get a grip on what was going on in our heads, we MSers. Some of us have no cognitive or emotional problems; some of us hide them and suffer in silence; some of us display them for all to see.

Last week I bottomed out and I still feel like I'm in an unreal state, not really here, not really present. It's bizarre, like I'm recovering from a bad cold or something. My brain is crowded around with clouds and mist.

Where is that sun?

May 21, 2012

Goal setting and struggling

I'm heading to Newfoundland this summer. I can't afford it, and probably shouldn't, but I've always wanted to see the glorious island, and I want to go while walking is still possible for me.
It's becoming increasingly evident that walking is slipping away.
My MS seems to have settled in my "spanx" area, neatly encompassing the Monty Python naughty bits, creating numbness and spasms and weaknesses by turns. My hip flexors, while toned, refuse to propel me forward affectively - they pull oddly, knocking my knees off balance and causing knee pain. Right now I can walk less than a kilometre most days.

The boat cruise I want to take to see the fjords of Gros Morne Provincial Park (the one on all the wonderful tourism ads) requires a 3 km walk to reach the boat. I am travelling alone, so getting someone to push me in a wheelchair isn't an option. Instead I'm investigating using my walker, Nordic Poles, canes, etc. And practicing walking in the gym.

I know I'm strong. Yesterday I carried an over 100 pound exercise bike out of my apartment (with help) and raised it over my shoulders to put it in a truck.

It's just the conversation between my muscles and nerves that lets me down.

So I continue to practice, knowing full well that it may mean nothing in the end, if my nerves shut down.

Back from the gym: managed 15 minutes on the treadmill, 15 on an elliptical ARC trainer, lots of core exercises. It was a good
Toes crossed it continues.

May 7, 2012

Exploring - how do I do it?

I'm plotting a trip to Newfoundland this summer, while I can still walk a bit. But even with the "bit" left, I'm wondering how best to get around. I hate my giganto unsexy walker. It looks old-lady-ish and is huge. A three wheeled one is smaller but doesn't come with the welcome seat. Canes are difficult to manage if you want to use your hands. I don't have a scooter.
Went looking on Amazon to see if I could find a sexy all terrain walker. Yep. It's there. Cheaper one costs tons. More expensive one is around the $1000 mark.
This being a crip ain't cheap.
So I'm emailing the people in Nfld and asking them how I can see as much as possible given my limitations. And they are coming through, charming folk that they are. The place where I'm staying near Gros Morne, Entente Cordiale, gave me a whole list of places I could see "just from your car". Others give me hints of activities still open to me.
I suspect I am going to like this place.
I just wish I had the right equipment to get around there.  Any suggestions?

March 16, 2012

How does one say goodbye?

I'm feeling pretty damn blue this morning. And angry. And frustrated. And just plain fed up.
Part of it is, I'm sure, the overlay of fatigue I've been dealing with for weeks now, so heavy it is like a Nova Scotia weather forecast - alternating between foggy with sunny periods and sunny with foggy periods.
But the deepest indigo is about my dog.
Chutney. Sweetest poodle ever, but still a puppy, given to scrambling off after interesting smells, wanting to play, demanding attention and love. As my walking capability has rapidly decreased to where it is a rare day when walking seems like a good idea, Chutney becomes more of a problem. He knows I'm in pain. He follows me around, holding a toy, looking at me sadly with his brown eyes. He foolishly has to pee and poo, and today, when ice covers everything, the near miss of falling is scary. I can't see managing a puppy and a walker together. He's strong enough to pull me over.
Initially I thought I could handle having a dog. I got Chutney as a statement of hope. I was moving to Nova Scotia, my life was moving forward, I just knew I'd be better in a more temperate climate, instead of suffering through the heat of Ottawa summers. I knew there'd be beaches for Chutney to romp on.
What I didn't know was that I wouldn't be able to easily walk those beaches, that pain would accompany me everywhere, that my leg spasms would become so significantly worse.
Chutney isn't without his faults. He knows when I'm too tired to play and he uses it to be bad. He whines if I don't pay attention to him and he costs a fortune in doggy daycare costs I can ill afford, but feel I must so that he gets some sort of quality life. The cost in treats alone is harsh, but he needs things to chew, probably because he is so frustrated with having to watch me sit about all day.
So, it's time for us to part. I have a friend who has a friend who has found him a home with a yard to run in, another dog to keep him company, a healthy family that can play with him and take him places and afford the food and toys and such. I'm hoping they like each other and that I like them, cos I won't send him away with anyone I don't like.
But...I am broken-hearted. To go with my broken, broken body.

March 14, 2012

Well, thanks so much for that...

I subscribe to an email feed from MS Answers!!
I love the way it is titled in my email box with two, yes two exclamation marks. Ooh, I think. I'd better go check THIS out!!!

It's a Q&A written by neurologists and MS nurses and physiotherapists and such, in response to questions sent in by patients and caregivers. I have to say, though, the answers are underwhelming and often just damn depressing.

Like today's, below. Essentially it says, yeah, life sucks. Sometimes it will suck more. We don't know if it will ever suck less again.

I dunno, but I'm getting a bit impatient. People have been studying this disease for a long long long time, and we are still left with so many "I don't know"s.AND PLEASE CCSVI trolls, go away. CCSVI isn't an answer either. It helps some, for a time. So do a lot of things. The problem is we still don't know what makes MS get worse and what can make it get better. We don't even know for certain yet what happens during MS.

I know the best and the brightest are working on this. I hope like crazy that the development of various MS registries across the world will help isolate patterns better, and am working hard to ensure the one in Canada is everything it should be.

But it's pretty discouraging when all you get is more and more of answers like this.
Especially when I'm feeling like hell myself, and wish like crazy it would all just go away.

Q : 
I have blurred vision in my left eye. I underwent steroid treatment for 2 weeks, and this relieved the pressure on my eye. My eyesight has improved slightly. Is there an average time frame for the eyesight to return to normal?
A : 

MS relapses often affect the vision in 1 eye – called an optic neuritis. It is an inflammatory attack on the optic nerve that transmits visual information to the brain.

High dose steroids are often used in attacks of optic neuritis and other MS relapses. The use of steroids shortens the duration of an MS attack, but does not improve the recovery from the attack. So, neurologists often use steroids if something important like the vision is affected, or if a person with MS is unable to function because of the attack.

Relapses can last for days to weeks to months. The recovery time for a relapse (including optic neuritis attacks) is totally variable. It could take up to 1 year to recover from the relapse. However, some people never recover completely from their attacks – sometimes the myelin (covering of the optic nerve) doesn’t repair itself as well as it was before. Then, they are left with “residual deficit” from the attack, and may never see as well out of the eye as before.

The fact that you have had some recovery is reassuring. But you may not recover your vision in that eye completely – it is still too early to tell. There are no other treatments other than time at this point to treat the optic neuritis attack.

March 1, 2012

Oh CCSVI - why won't you die???? Maybe if we inject you with stem cells....

Every once and awhile, some search engine finds my blog and I get dive bombed by CCSVI protagonists. This time I also got messages from those recommending stem cell transfusions. Which, I must quickly add, have even less science support than CCSVI does, and which have been tied to rather severe side effects, unlike CCSVI overall (though don't get me started about stenting, which seems to have a shockingly high fatality rate, or the rate of restenosing, which also seems unacceptably high)
Strangely, these dive bombings come from places where neither procedure is allowed on the countries' own people.

What does that tell us?

I dunno, but my "sucker alert" becomes activated. You know - that little beeping sound that tells you there are people out there seeking to take advantage of desperate folks with deep pockets - or worse still, desperate folks with shallow pockets, who go broke trying to cure this dratted disorienting disabling disease.

Now, I can understand the desperate people. I've been there. Heck, I already have my suicide plan in place and review it regularly. Not for use now, I add - heck, I can't even decide if I should get rid of my dog. No, it's for later. Just in case.

I don't understand the people on the other side. The ones who seem willing to rip off sick people for unproven and even dangerous therapies (by this I mean stem cell treatments and stenting).

The pro-CCSVI people go on about how big pharma loves we MS endurers cos they make tons of money off of us. Well, follow the money, people. Look at what CCSVI has brought providers. Look at what repeated treatments bring them. Look at how they treat and then send any complications back home where they don't have to pay the costs. Just saying'.

I know, some people say they've had wonderful results from CCSVI. And they may well have. God love 'em. And I'm happy for them. I'm less happy about the paranoid rantings against anyone who raises a question about the procedure - that just makes we MS people sound like crazy people and I have had my care suffer because of this.

Me, I'm waiting for the science. And yes, each and every day I lose a bit. Like sands through an hourglass, as the old soap used to say, my abilities slip endlessly through the narrow neck of no return. I exercise my body and my mind in an attempt to stall the flow. I take my medicines like a good patient, most of the time. But I'm not a pawn of big pharma and I fight taking any extra meds. I do my research and am glad I took the time to study nursing and epidemiology and health policy so that I can, in fact, usually understand what I am reading.

I know the tipping point may be just around the corner, where I can no longer walk dependably. But it's not intolerable yet. I am alone, so must learn to be dependent, and this is killing my soul. Or making it grow. I haven't figured that part out yet.

I'm not yet willing to give some manipulative money grubbing individual my carefully saved thousands of dollars for a treatment that may well not work, only to be left with not enough money to afford the wheelchair I will now need. I've seen far too much of that out there, and it breaks my heart.

If I do eventually succumb to temptation and try out CCSVI, there's no way I'd agree to stents. There's nothing good to say about them.

And I damn well will not give my money to someone who plans to inject me with stem cells - those cells that can turn into ANYTHING and that don't show any promise unless you actually kill off all the regular immune system in your body. Even then, the risk of death is high high high.

Listen to your sucker alert, will you? Let's stay safe out there.

February 14, 2012

Black Holes in my brain...or, do we actually know ANYTHING about MS at all?

The longer I have this disease, the more discouraging it becomes. Not so much because it's a stinky disease and has its hateful bits, but because the more I look at the research, the more I realize we actually have no idea at all about what goes on with it, despite years and years of research.
I just finished reading this report (
about the black holes (so termed) that form in our brains over time. I had thought I was told they were permanent, visions of brain death and atrophy.
However, this study talks of how they can revert. Huh? And of course there is no association between the number of them and disease progression except in that overall brain atrophy is linked with physical and cognitive decline. At least I think that is what I understood, given that my brain doesn't seem to be functioning so well today. It's squinting, trying to focus. Brain squinting is an odd sensation. I used to be a hyper-intelligent mega-being with delusions of grandeur. Now I'm just deluded.
So, to summarize what I know about MS:
1. the disease modifying drugs we all take every day don't actually prevent progression of disease, they just modify how it presents itself - i.e. fewer acute attacks - but still the disease goes on ever on in our nervous systems. The drug companies want to tell us they delay progression, but I'm not seeing it in the research. So, after years of injecting myself with this drug, I have absolutely no proof that it's doing anything for me except bettering my injection skills and helping me learn how to needle felt.
2. Cognitive changes and mood changes are very poorly understood and rarely dealt with, as is pain. So we wander about, foggy and groaning until someone takes pity on us and feeds us chocolate.
3. What used to be an indicator, number of brain lesions, is apparently totally unconnected to disease activity and it is really the silent inflammation that causes the problems. Of some part of the brain as yet uncertain. Maybe glial cells. Maybe that bubble gum I inhaled as a child. Who knows.
4. We have no idea what causes the inflammation, what makes it worse, what makes it better, or what causes it to start in the first place.
5. The only way to treat the disease is symptomatically with ever more intrusive treatments, appliances, care, limitations. The thought of a scooter was cool when I didn't see it lurking around the corner. Let's not talk about Depends, shall we, until Victoria's secret makes some?
6. We used to think that MS was unknown in people who get a lot of sun, but now we are finding fresh cases that have had MS for years and who have only just moved north from the equator. So maybe the Vitamin D thing isn't right, either.
7. Practically EVERYONE gets Epstein-Barr virus at some point  (though it's one of those things that is implicated in many diseases) so why do some get this, some get non-Hodgkins lymphoma, etc? Is there an infectious cause? Who knows?
8. CCSVI's hypothesis isn't proven, but some people get benefit from having their veins plunged. No one knows why. No one knows why not. Everyone knows stents are dangerous, but people are still getting them. There is no logic in this disease anywhere, except the logic of the market.
9. Completely killing your bone marrow and starting fresh with a new lot of cells seems to help - but for how long? No one knows.
10. Apparently zapping your brain deep inside can help with cognitive problems, but it also helps with depression, which can lead to cognitive problems. Chicken and egg, people. It's always chicken and egg.
11. The only certain thing, MAYBE, is that we are losing myelination of our nerves. But are we really? Since most of the research is done on mice and cadavers, I'm not so sure even that is true, and as I'm still alive, and not a rodent, I'll never know til too late.

Is it any wonder we get depressed?
Ach, the hell with it. It's obviously time to stop looking at the research. It makes my brain ache, and I know that can't be good.

February 10, 2012

OOH, me aching bum...

I'm beginning to hate my "trunk". You know, the place where you put the "junk".
It seems to be giving me a fair bit of trouble. Started with back of bum spasms when I walk. Not pleasant, but I got used to them. Then the front of my thighs started in on the game. Cool, I thought. At least I'm balanced.

Then my inner thighs. Now that was weird feeling. They kicked in at a meeting and I had to rub them secretly under the table which of course made it look like I was distracting myself in an impure manner (as George Carlin would say).
So I just pushed on them and tried to persuade them to let go. They still haven't. They won't let me put my legs together, so I sit like a 50 cent tramp. As my grandmother would probably say. Good thing I wear pants. Good thing they don't have holes in unusual places. Good thing I'm not working anymore.

Now we're going for nerve pain up and down the super secret place. It's hard to feel elegant when you are hissing through your teeth to avoid screaming. Hot needles. Long hot needles.

It's MOST annoying as otherwise I'm completely numb "down there". It seems unfair. Either give me it all or take it all, right? Half and half, when I only get the bad half is nasty.

Was bad enough yesterday to surf on serious drugs. Fortunately today the needles are only occasional. I'll be sitting, completely comfy, when one shoots up my unusual location.
I'm frightening the dog.

January 30, 2012

Wondering what to do...

I have to make a trip by plane to Ottawa. Here's the I take my cane, which is some help to me but which isn't a LOT of help to me, if you know what I mean - or do I take my bulky rollator, all shiny black four wheels of it? I can walk SO much better with it, but I probably won't be walking much and it's so bulky. On the other hand, in addition to MS I am having knee problems and there is a significant difference in pain if I use the rollator to walk.
Hmm. How much of a crip do I want to be?
I am lusting after a little collapsible 3 wheeled rollator but it's $100 I don't have at present. So....
Any advice, MSers?

January 28, 2012

MS as a lipid disease? Interesting concept...


Have we been looking at Multiple Sclerosis all wrong?

Multiple sclerosis is a confusing disease. Widely regarded as an autoimmune problem, it affects millions of sufferers, and we still don't have a complete grasp of what causes it. Part of this problem is due to the fact that every time we find something that seems to be a factor in how it works, that factor doesn't seem universal.
But now there's a new theory of MS that could lead to a radically different treatment for the disease.
A new meta-analysis by Dr. Angélique Corthals proposes that much of the difficulty we have with understanding the causes of MS may be because we're wrong about its basic mechanism. In a publication in The Quarterly Review of Biology, she proposes that rather than an autoimmune disease like previously supposed, MS might in fact be a metabolic one with an immune component.
It's a bold assertion to be sure, and one without original data to back it up (at this point, anyway). With MS, the myelin which protects and insulated the nerve tissue on your brain and spinal cord swells, and then scars, leading to neuronal damage. Corthals' theory gives another framework to approach this damage, and one with links to a disease we do understand — atherosclerosis.
This is where things get a bit dense, so bear with me.
There are certain environmental and genetic factors which can impair PPARs (peroxisome proliferator-activated receptors), which is part of the system that controls the metabolism of fat as well as immune response. When it's running at partial power, the PPARs can't properly control the levels of LDL — the infamous bad cholesterol — which leads to a build up of an oxidized toxic derivative of LDL called oxLDL in the blood. Once these are in the system, Corthals believes the body is "primed" for MS, and it can be triggered by a number of causes, including Epstein-Barr Virus, which is linked to MS in its own right.
Once triggered, an immune system chain reaction starts. The body sends out macrophages to deal with a pathogen, but the macrophages incorrectly gorge themselves on oxLDL. This puts them in a "zombie state", where they don't die and can't empty their contents, instead just building up plaques which damage the myelin sheath, and cause the symptoms of MS.
Edited to clarify: At this point, the disease triggers the immune problems we know of as MS. The theory isn't discarding the immunological side of the disease, just citing metabolism as a root trigger, which leads to the problems of the immune response.
Said Corthals:
Eventually, the toxic macrophages are cleared, leading to the remission part of the RRMS (relapsing-remitting MS) cycle. But this detente holds only until the next trigger comes along. Dysfunction of the PPAR is further implicated in MS because it slows the repair mechanism of the central nervous system to a crawl, preventing the efficient renewal and synthesis of myelin.
It's a novel theory, and while Corthals is working on pulling together some empirical data to back it up, it does answer some of the issues with how MS manifests. The disease has been linked previously to low levels of vitamin D, and is on the uptick in recent decades. Low vitamin D and a diet high in both saturated fat and carbohydrates (which is likewise on the rise) both contribute to the impairment of PPARs.
The mechanism that Corthals suggests is also interesting because it's incredibly similar to that of atherosclerosis. Atherosclerosis is when PPAR failure causes plaque buildup and scarring in arteries, which is the equivalent to what's being described happening to myelin. Also interestingly, men are far more likely to have atherosclerosis and women to have MS, which Corthals suggests may be because of the different way sexes metabolize fats. In the paper, she recommends "multiple sclerosis should be thought of as a metabolic disease, the female equivalent of atherosclerosis, not as a disease of the immune system."
If the raw data bears out this theory, it would mean a radically different approach to the treatment of a major chronic disease. One based on lipid metabolism (and potentially diet) rather than targeting the immune system directly. If it holds up, it would be a major paradigm shift in the way MS is handled — but first we need to see if the data fits the theory.
For further reading, Corthals has been weighing in on this discussion, and if we're lucky, she may even pop up here.
Contact Tim Barribeau:

Interesting discussion on this blog as a link to the research article.

January 25, 2012

The daily-ness of it all... walking, walking , walking

I linger in bed as long as I can, after a night spent tossing and turning, where I turn on my radio without knowing it and then wake myself when the volume level changes suddenly. I spin and toss as my legs ache. Finally I know I have to get up because I have a dog whose bladder is no doubt at the point of rupture in the next room. I stagger into the shower and/or pull on clothing, release the hound, and it's time for the morning ramble. It starts off easily enough, particularly if I remember to bring my cane, though handling leash, exuberant and desperate puppy, keys and poop sacs is an interesting dexterity challenge. Today I can see properly, so it's a bit easier. Last night the fog was internal and external. Weather and vision. That terrifies me and I spend a fair bit of my time praying loudly that the gods preserve my sight.
But about, say, 300 yards into the walk, it is no longer pleasant. Legs and hips remind me of the MS. They start, ever so annoyingly, to add pain to the walk. Like sands through the hourglass (as the soap "Days of our Lives" used to say), each step adds a soupçon of misery. By the time we're on our way back, the dog is dragging me, looking back to see what the problem is. My legs feel like they weigh 2000 tons, like the weights in Wily Coyote's plots.
I suppose it would be easier if I used my walker, but I'm fighting that. It's even bulkier than the cane and I'm not sure how I'd hold the leash. I suspect bungee cords would be involved.
But we get home and I stagger about feeding the beasts until I can slump myself into a chair.
Which, about half an hour later, is uncomfortable. So I stand to pain.
There's got to be a way out of this cycle. Other than scotch, which does help but which isn't recommended for breakfast, for some reason...

January 13, 2012

Fog Horn

I am lucky enough to live near the sea - right near Halifax Harbour. It's fabulous. There are two sounds that make me smile every time I hear them - the noon-day gun, and the foghorns.
I wish I had one of those. I'd like to be able to blatt it out whenever I go to do something without thinking. Which is a lot of the time these days as my MS-brain gets more muddled.
Like when I signed up with my local newspaper (a shameless rag). I didn't realize I had agreed to subscribe in perpetuity. So when I changed my credit card and they sent me a note saying that my credit card had been declined and if I wanted the newspaper I should call them right away, and I didn't call, I ASSUMED that meant they'd discontinue my paper. Not here in nice NS. They ran it on for another month. Then charged me. Now I don't feel like I should pay for the newspapers I didn't ask for, but who really knows what went on? I surely can't remember.
Or when I go to buy something and buy it without realizing I have no money to pay for it.
Or when I send in a writing entry filled with errors and spelling and grammar mistakes cos I just don't see them.
That's when I want to pull the chain and blatt out a big foghorn warning for everyone who has to deal with me - but for me, too. For now, I'll just have to hope it stays foggy around here and pretend the ones I hear are meant for me...

January 10, 2012

Not the hands, please god, not the hands!

I've dropped my keys about 20 times in the last few days. I can't open milk containers anymore without the use of a knife. Bits of paper have to be attached to me with pins or they flutter to the ground.
My hands are losing their grip.
How damn annoying.
I just started loving knitting. I have oodles of yarn to make into things. Yet my hands can't handle it anymore.
I can't read big books (I like big books and I cannot lie). Having to read on an ereader, which is okay except it dies regularly. Grr.
On the good side, I've started needle felting. And since my fingers are numb, I can stab myself with gay abandon. As long as I'm felting red things. To soak up the blood.
But I type my thoughts. What if I totally lose that? Yeah, I can use that dictation software but it's hard and bothersome and just not as much fun as it should be because you have to speak punctuation. Period. Which is annoying. Period. Or is that exclamation point? Question mark
You see how it could be frustrating comma especially since I don't often think of punctuation and just let it happen period Which accounts for a lot of my editing problems comma perhaps period.
New paragraph.
Arggh. And then there are the mystical misspellings. When I get on a  good dictatory run, I don't watch the words form on the page (partially because it is a bit slow and it's a bit like listening to a recording of you speaking just a bit slower than you do). I go back to reread and find the punctuation parts and realize a completely different story has been written.
It's not that it is necessarily a BAD story, but it isn't the one I was writing. I feel like I am in a partnership with HAL. (I wouldn't erase that if I were you, DA)
I need my hands. Take my legs. I've already seen them going. Bits of them are dropping off - the toes went first, numb and no longer available for location. My hips are on temporary strike and need to be promised increasing wages to cooperate. My knees just laugh at me. Shaving my legs invariably results in loss of blood. They need support, preferably 4 points of it.
But my hands - I like them. They are squarish, man-hands, designed for work. And I want them to work. Please?

January 5, 2012


Teva CEO
I hate having to take Copaxone. It's not so much the shots that get to me, or the fact that it doesn't seem to be doing anything to slow this disease - it's because TEVA pharmaceuticals is one of those bad bad drug companies who overcharge for their meds and do so obscenely and even after being reprimanded and charged a fine - and now they are dancing in the streets because a rival company is raising the price on another MS drug and so they can probably increase their charge for Copaxone.
It's this sort of practice that makes me see red. Why do companies have to become obscenely rich on the illness of others?
Of course, I should check my mutual fund portfolio. Perhaps I have some stock in Teva. In which case, I've been supporting their greed and gluttony.
"Curses," as Snidely Whiplash would say, "Foiled again!"

Word Salad, Or gazing through a diver's mask...

The other night I headed out for dinner with some friends despite my feeling of overwhelming fatigue after the holiday. I was glad I had a sweetie to drive me because for most of the evening I felt as if I was wearing a diver's mask - one of those ones where you can just see out a tiny glass screen, while the rest of your head is surrounded with copper. I couldn't understand my voice level - I was sure I was shouting and kept trying to bring my voice down. I have no memory about our conversation; I barely remember what we ate except that it was delicious and so is stuck in my sensory memory. All the time I spoke I felt like I'd been heavily into the wine - my mouth needed thought to form words and they seemed to come out mushy and drunken.  Muscles for speech were sluggish and sullen.
We staggered home - me tacking heavily to the right and left (again, thank heavens I wasn't driving) and I fell into bed to sleep for 12 hours straight.
It's probably the worst I've been cognitively for some time, and reminded me of how I felt after a couple of days at work. It amazes me I was even able to show up. Small wonder I seemed like an idiot to others, or a grump, or a bitch. Who knew what my voice was doing? Or my mouth? I certainly didn't. I feel like I should apologize to everyone.