Fampyra diaries: epilogue

Hey all - 

Well, Fampyra and I have parted company, at least temporarily. I was finding it contributing to my gastric reflux, it was disturbing my sleep to the point where my little FitBit was recording me in bed for 9 hours but asleep for 3. I'd think it was the machine but before I took Fampyra and after I stopped taking it, my sleep hours lengthened to 6 or more. So I must've been doing something when on it.

Tough to guess as I am in bed alone (see previous post) but thats my thought.

Plus I can't really afford the $570 monthly charge - I could, I suppose, if I really felt it was helping that much.

Of course, now that I'm off it, I am having increasing trouble walking but to be fair, I was before I went off it, too - just the progress of the disease, I think.

I have an appointment with my doc in October and will get re-evaluated then. She may think I should try it again. I may differ. 

If any of you have had sleep disturbances when on Fampyra, write it in the comments....would love to know how everyone else's experiences are. I just know I need more than 3 hours of sleep a night...

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

Party, recovery, party, recovery

google.stb.csi.stTbn()

If only they were balanced!
This weekend I was lucky enough to have my favourite sister and her friend come to visit Ottawa - they arrived on Friday night and left Sunday morning. On Saturday, we were wildly busy - dawdled over breakfast, heading down for a skate on the canal (and I could skate, except for that left hip flexor action...) - they went far, I went for a goodly bit. The canal was glorious and the weather cool, not cold. It was a perfect skating day. Then we came home, walked the dog, saw a movie, ate good pizza.
It was glorious fun.
After they left on Sunday, I fell onto the sofa and slept from 11-5.  I woke up briefly, took the dog out for a pee, came back, in bed by 10, slept til 9:30 this morning and am ready to sleep now at noon. It will probably take me a week to get over that one day, as my feet ache with unexpressed spasms, my eyes twitch, my body hall surfs from one side to the other.
It was all so worth it, but I would wish for quicker recovery.
I live online, ordering things for delivery, since I know that walking around in a shopping centre exhausts me. And this despite exercise daily. And gallons of high test coffee and tea.
Sleep, wonderful sleep, beckons....

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.

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.

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.

Exercise and MS, or hey, let's help ourselves!

All the noise and chatter about CCSVI and the demands for treatment immediately ignore the things that we can do for ourselves, right now, whether or not you believe in the reflux theory or the autoimmune theory.

But like many things, it involves personal effort, not an automatic cure applied by someone else.

And it isn't easy. And it often hurts. And our MS bodies seem to not want to do it.

It's exercising. Yeah, we all are losing our abilities to do this, we are all less able to exercise whatever muscles we have, but the ones still left can and should be exercised, even if we feel too tired to do so.

Today I was in too much pain to walk earlier this morning, but once I'd thawed a bit, I was able to do some exercise, and I feel better for it. I was sore because I'd overdone the exercise thing the other day, but I'll probably do it again. I feel an overwhelming need to do so.

First, aerobic exercise pushes the blood around my body. This is good for my leetle grey cells, as Poirot would say, and if I do have a blockage, the increased blood flow will inflate those veins as well as a tube. Plus my lungs need a workout, and I like sweating.

Second, the strength and stretching exercises, like Yoga, go a great ways toward stopping my spasms and twitchings. Worth the 30 minutes of wondering about whether I can make it to stop the hours of discomfort from the spasms.

Third, exercise helps reduce inflammation, one of the problems with MS. I figure the less brain inflammation, the better.

But fourth, and most important, my ex-mum-n-law is dying from ALS. She was just diagnosed and is slipping too quickly downwards. Yet, each day SHE exercises. With the scant muscles and air left to her, she exercises. She's 84, and breathing is a big challenge these days.

How can I look her in the eye and say I was too tired to exercise?

I can't. So I'm going to push my weary body, even when sore.

And you know what? I am already seeing a difference - in my thinking, in my emotions (wii punching is very good for that) and my muscle and core strength. If that delays my inability to walk by one day, I'm all for it.

So, maybe, instead of asking for a push-button cure and blaming everyone around for not coming up with it soon enough, why not work on ourselves?

(Can you tell I am totally totally fed up with the venom over CCSVI and the attacks on neurologists? Excuse me, I have to go do some more punching. If nothing else, all the frenzy will keep my upper arms fit.)

Need help? There's an excellent DVD available in Canada called "It's Your Choice". In the US you can get a DVD on yoga for people with MS. Tai Chi and aquacize is available everywhere. Walking helps, stretching helps. Just moving helps. Get hand weights and use them when you're watching TV. Or use canned food as weights. And for heaven's sake, use some of the energy you are wasting on calling names on the webboards and move your body. Even if CCSVI is a significant help, we'll still need to do a lot of work on recovery ourselves.

Exercise has protective effect on brains of multiple sclerosis patients

ANI

Friday, February 19, 2010 11:00 IST

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WASHINGTON: Exercise is good for the brains of patients with multiple sclerosis, a new study has found. In the new study, researchers found that highly fit multiple sclerosis patients performed significantly better on tests of cognitive function than similar less-fit patients.

In addition, MRI scans of the patients showed that the fitter MS patients showed less damage in parts of the brain that show deterioration as a result of MS, as well as a greater volume of vital gray matter.

"We found that aerobic fitness has a protective effect on parts of the brain that are most affected by multiple sclerosis," said Ruchika Shaurya Prakash, lead author of the study and assistant professor of psychology at Ohio State University. "As a result, these fitter patients actually show better performance on tasks that measure processing speed."

The study, done with colleagues Robert Motl and Arthur Kramer of the University of Illinois and Erin Snook of the University of Massachusetts, Amherst, appears online in the journal Brain Research and will be published in a future print edition.

The study involved 21 women diagnosed with relapsing-remitting MS.They were compared with 15 age- and education-matched healthy female controls. The study assessed fitness, cognitive function, and structural changes in all participants.

And one and two and one and two

Update on exercises, brain plasticity and all that...
Still slogging through the Wii 30 day challenge although it kills me for the day after each exercise session - and I deleted squat jumps out of the plans for yesterday as my knees felt this was altogether too much to ask. Still, my running is getting better and I can smash the targets in boxing...
So today, as my body needs rest, I thought I would try exercising my brain - and ooh, is it rusty! I know I've been choosing simpler books to read and avoiding mental challenges but I didn't know my slumming had had such an effect. I signed into a site by Luminosity: http://www.lumosity.com/ and signed up for their 7 day free trial of the games.
They are great - much better and more challenging and also cuter than the ones on Brain Age 1 and 2. You do math, identify things through memory, create words, match shapes and colours. Most of the games are a bit like the Swope test - you have to do two things at once, and the results highlight how your brain reacts to these two demands.
For example, in one game, you must click on a spot where a bird appears while remembering the letter that appears at the same time. The letter is put into a hangman-type format and you can guess the bird's name or fill it all in with "snapshots" (each bird you click uses one shot). Sometimes, while looking for the bird, you forget to look for the letter. Or you just see an edge of it. You get higher points for clicking more accurately on the bird and for solving the puzzle earlier.
Or there's the penguin maze puzzle, which I found really hard. You are racing another penguin through a maze to catch a fish (it seems nice that the other penguin moves so slowly except when he beats you and you feel very stupid) - using the arrows on your computer to direct your little penguin. The trick? The maze rotates and you have to remember the orientation of the penguin with relation to the arrow on screen to use your arrow keys successfully. I got completely confused and couldn't make my mind figure it out, no matter how hard I tried. But the penguin is cute when it catches the fish and oh so sad when it loses it so I'll be back and try again.
Math is done with raindrops...each drop has a puzzle in it and you must solve it before it adds to the pond. Sundrops come along that evaporate all the raindrops. This one I'm sure I will get after more practice - it seems when I don't do math regularly, I really forget sums and etc.
After each puzzle you are given a rating, and if you fill out your profile, you can be compared to others your age. It was quite terrifying today for me - I was only in the 38th%tile or so overall. The program rates you on several parameters, so it's easy to see where you might need more practice.
After the 7 day free trial, signup is around $10 a month or less if you subscribe for a year or more. They add new puzzles all the time and the site is backed by research.
I'm hooked. I'll keep up for the next 7 days and if it continues to be as interesting, challenging, and fun as today was (I could feel my brain aching!), I'm going to sign up.
But for now, I am taking my aching body and mind for a rest.
.

Aiming for health

Before I moved, I purchased this exercise game for the Wii my youngest son generously left for me when he took off for places unknown. I finally tested it today. On lowest intensity, and with a half hour workout, I was sweating freely and it felt glorious! Kick boxing was wicked fun, and even the running was amusing, although I had some problems with the leg strap (I believe it is used to people with longer and or skinnier legs).
So I've started the 30 day challenge. Each day, more exercises. Different exercises.
The game gives you instant feedback, demonstrates the exercises effectively, and saves everything to adjust your next days' workout. I can't wait to see what it will have for me tomorrow!
Best thing? No weird looking coaches like the bluish ones in the Wii Fit program that gesture at you with gently swinging arms. I do still like Wii Fit's strength and yoga exercises, though.
Also, unlike Wii Fit, Sports Active doesn't make your body look exactly like yours does in reality - I come off as rounded but not spherical which is better than my tiny donut Mii from Wii Fit.
Much fun - highly recommended and I'll let you know how I get on, MS et al, with this tool. Apparently they are coming out with an expansion pack of new exercises soon, but I think this main program will keep me busy for some time. AND I can exercise scantily clad and gasp in the privacy of my own home...

Exploring Insomnia

Lately I've been exploring insomnia. I blame my radio reception. I used to turn on CBC late night when I couldn't sleep and the ongoing news stories about countries all around the world would usually ease me off again - unless it was "Radio Africa, rise and shine", which is accompanied by loud music. Now, in my rural sound-proof zone, I'm stuck with a top 40 station and try as I might I can't get my legs to stop trying to dance. I'd try silence, but the chattering monkey mind just won't let me, and even if I ease it off into some quiet mumbling place, my body plays traitor and the leg pains start. Or I twitch. Or I can't resist tracing out where my numb bits are.
It's frustrating. I am so tired already during the day and then to not sleep puts me even further behind on my energy imbalance.
And don't the thoughts at 3 AM make for restful slumber? Right now I am spending a lot of potential sleeping time thinking about the minutae of my move. I realized with a start I packed part of the internet access I am supposed to return (those darn phone filters). I obviously packed my satellite receiver, but have no idea where or when, and it was foolish as I don't need it. My important documents have gone walkabout. My house is in a total disaster state and I can't see where anything is at the moment, yet I am too tired to do anything about it. And then I get thinking the thoughts of a single person late at night....
Why am I alone again at night? Why don't I have anyone here to help me, to comfort me? Why can't I lose weight and be more attractive so I won't be alone at night? Etc. Then I vow exercise, eating right for the next day...
But when daybreak arrives, I am too tired to function, so do neither...
And, all alone in the town that always sleeps, I wish some sweet coppers would come knocking at the window, just for the company. They'd have to bring the cake, though -I've already eaten all of mine.