Fampyra diaries

I've recently been started for the second time on the MS drug Fampyra. It's been approved for use in people with Multiple Sclerosis to aid walking speed and ability.
I tried it back in January and had to stop it because of overwhelming vertigo  - I think there were a bunch of factors at play there, from recovery from a trip to Cuba to the flu, to a urinary tract infection (one of the known side effects of Fampyra, and unusual for me). Now that I've recovered from those things, I thought I'd give it another go.
It's not inexpensive. A monthly dose costs upwards of $600. My drug insurance doesn't cover it, though I can write it off on my taxes, I suppose. So it's gotta be good for me to continue it.
When I tried it last time, my walking dramatically improved. I could walk much further and faster and for a longer time - a significant change in all three parameters. But is it worth the money?
While the drug, a potassium channel blocker, is approved to help with walking, I am wondering if it will also have an effect on other functions affected by MS.
Here's what the MS Society of Canada has to say about the drug:

Details
Biogen Idec Canada announced that FAMPYRA (fampridine sustained release tablets or fampridine SR) is now available for prescription in Canada. Health Canada approved
^PrFAMPYRA™ on February 10, 2012 for the symptomatic improvement of walking in adults with multiple sclerosis (MS) with walking disability (EDSS 3.5-7). FAMPYRA is the first approved treatment for walking impairment in adults with MS.

Fampridine blocks tiny pores, or potassium channels, on the surface of nerve fibres, which may improve the conduction of nerve signals in along nerve fibres whose insulating myelin coating has been damaged by MS.

Common side effects of fampridine include urinary tract infection, difficulty sleeping, dizziness, headache, nausea, weakness, back pain, problems with balance, MS relapse, burning, tingling or itching of the skin, irritation of the nose and throat, constipation, indigestion, throat pain. The initial prescription should be for no more than 4 weeks, and assessment for improvement in walking should be carried out within that timeframe.

Please contact your physician for more information about treatment with Fampyra and the FAMPYRA In Motion™ program.

My excellent doctor here has seen improvement in cognition and sensation and urinary function and all that in her other patients as well, which makes a certain amount of sense since the effects are systemic and the conduction, if improved in walking nerves, should also be improved in other central nerve pathways. I've been having problems with my vision for a few months now - blurring and variability - and I am seriously hoping for some improvement. Plus I'd like to be able to walk well enough that I could lose some weight, thus making walking easier even if I'm off the drug.

I thought I'd keep track of things on my blog, in case anyone else is considering the drug. We all know that anecdotal reports don't = truth but maybe my experience will be of use to those of you wondering.

Today I went to the pool, as I do two to three times a week, and swam 32 laps. I can do up to 50 on a really good day but have been generally holding steady at 36 to 40. I felt good, but after two pills (last night and this morning), my body feels different. Meatier, somehow.

I'm somewhat dizzy, and I am having difficulty with typing but that's normal for me. Onwards ho!

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

Okay.
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...
http://youtu.be/NOMOwyHCHmQ

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. http://www.bontours.ca/galleries/index.htm

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 day...today.
Toes crossed it continues.

http://youtu.be/Rqh8Jqu8tIk

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?

Wondering what to do...

I have to make a trip by plane to Ottawa. Here's the problem...do 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?

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...

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

https://msofs.mssociety.ca/2011walk/ORSCentre.aspx?L=2

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

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

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

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

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

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

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

Thanks.

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...