Oh Goodie!

Less than a week to my bilateral total knee replacement and I'm reviewing the inter webs about information...
And I see this one...apparently my sex life will get better post-op. Hmm. Now I just need a partner...;-)

http://tarlowknee.com/category/total-knee-replacement/page/4/

Dr. Tarlow comments:  Common knowledge says successful joint replacement surgery improves life function and patient well being.  Less often addressed but of importance to patients is the effect joint replacement has on sexual intimacy.  Fortunately, good news is seen in this aspect of patient life after orthopedic surgical intervention.  Read on.

From the Daily Mail -U.K.

From  a report from  Rathod P, Deshmukh A, Ranawat A, Rodriguez J presented  at the 2013 Annual Meeting of the American Academy of Orthopaedic Surgeons (AAOS).

 Painful osteoarthritis of the hip or knee can reduce mobility and make normal activities like walking, exercising and yes, even sexual intimacy, a challenge.  New research evaluating the influence of total hip and total knee replacement on the physical and psychological aspects of sexuality found a majority of patients experienced reduced function before surgery. Fortunately, significant improvements were reported after total hip or total knee replacement surgery. 

Before surgery, 147 patients answered questionnaires for the study. Of them, 67% reported physical problems with sexual activity such as pain and stiffness, and a whopping 91% reported experiencing psychological issues, related to sexual self-image and general well- being.

Post-surgery, 116 participants responded to questionnaires and reported significant improvements in both physical and psychological issues impacting their sexual function. Ninety percent (90%) of patients reported improved overall sexual function after total hip or total knee replacement, with total hip replacement patients experiencing a higher rate of improvement.

The post-operative improvements reported were:

• Improvement in general well-being: 84%
• improved sexual self-image: 55%
• improvement in libido: 42%
• increased intercourse frequency: 41%
• increased intercourse duration: 36%

People considering total knee or total hip replacement surgery should talk to their surgeons about their current level of activity, and what they can expect for their post-surgery return to activity – in and out of the bedroom.

Stages of change...

You know, I just get used to this MS thing when my body throws me another curveball. For the past several years I thought my major difficulty walking was caused by my MS. Nope. Knees crusty with arthritis. 

So oh well, I thought. Let's change them up. Get fresh knew ones. Seemed reasonable.

And then I met my excellent and caring anesthesiologist, who described for me what I could be given  to perhaps help me with the expected excruciating pain.

Excruciating pain.

Yep. According to him, knee surgery is probably one of the very worst surgery one could have, and the MS gave him pause about how my pain could be controlled, given the nerve confusion and conduction problems.

I think he was trying to talk me out of having them both done at once. Instead he made me more convinced I needed to get it over with as the thought of going through this twice sounded horrific.

For pain relief' according to plan:

- advance Baclofen to reduce spasms, increase dose significantly for the first few days.

- advance acetaminophen, antiinflammatories, and morphine

- two nerve block shots in the back of my knees

- two ongoing drip nerve blocks for the front of my knees - down low so as not to affect the motor nerves but to cover the sensory ones. My legs are all of 24 inches long in entirety. Given the need for a long incision for the surgery itself, I figure these will end up somewhere near my groin.

- patient controlled analgesia for general pain.

And that's just for the first 48 hours. I'm thinking I should do a liver purge now just to get my cells working.

Plus I'm thinking he wasn't kidding about the pain. 

It's a bit panic inducing, though the doc was so caring and sweet. As is my surgeon. They must see something in my face because they look at me and say, intently, "we'll take good care of you."

It is amazing how much a kind look, a hand on the shoulder, a voice of concern and a gentle explanation go towards easing my fears.

Two weeks from today...new knees...excruciating pain. Ooooh.

 I am taking my aching knees for a walk today to keep them toned.and doing my knee exercises like a mad thing.

And hoping the MS induced numbness hangs around for the next several weeks...

Kneeless in Nova Scotia

I'm in a state.
Of what, I'm not sure.
In a little more than 3 weeks, I'm off to have both knees replaced, at the same time.
To say I am gradually becoming awash with anxiety would be true. To say I am dreading pain would be fair, too. To say I am wondering how this will affect my MS would be right on the money.

I've survived surgery before - each time I had a C-section I was up and about quickly and healed up well. I had a baby to look after, too. In one case, three kids to look after. And somehow I managed it, largely thanks to the helpful intervention of my wonderful mother-in-law, who tended to everything while I healed. (true, sometimes she tended too well - I don't ever remember finishing a cup of tea, but at least I had the first inch or so before the cup was washed)

This time, I am even more fortunate. I have a circle of friends who are willing to help out, two grown sons who are pitching in, lovely things, a new apartment designed for such things.

I also have a spine that is damaged by MS, an epidural space that didn't work on my last delivery because there was some damage there, according to the anesthesiologist, and yes, spasmy legs and arms and bum muscles and general bodily pain from this disease that can only get worse with aggravation.

I've read a couple of studies on people with MS having knee replacements. They weren't encouraging. One small study reported acute hamstring spasms that required further surgery. Another reported over-mobility of the knee joint - which made the surgery a failure.

Three people, total. Anecdotal. Not significant. Enough to create a mini-cloud of worry.

Like my friend Tim, who watches airplane crashes endlessly before flying, I've been glued to graphic surgery videos of knee replacement. I can feel my legs being sawed and hammered. It looks positively brutal.

I panic, exercise the joints as they've taught me. Should lose weight but feel the urge for chocolate so strongly as my anxiety rises. So I bend my knees and do exercises as I chomp down milk chocolate. And sip single malt. I'm trying to be smart but parts of my brain have their own ideas.

So why do it? Well, I can't walk without pain. This could give me walking back. I thought the pain was due to MS until I saw my X-rays. My knees are crunchy. With replacement, I COULD get another several years of walking back, dealing only with the MS.

With better knees, I can exercise more. This is good for all sorts of reasons. General health, anxiety, weight management, control of MS.

So wish me luck. I'm taking a literal leap of faith here. With any luck, I'll soon be able to leap better.

Fampyra diaries, 2

So far the vertigo that forced me off Fampyra last time seems to not be present, thank heavens.
Is it helping? Well, I FEEL different. Swam on Friday and found it harder to swim but that's cos I was going a lot faster - normally it takes me a minute per lap, and Friday I had knocked that back to 45 seconds.
Significant improvement there, but it still feels like my body isn't quite right.
MS walk tomorrow. Apparently there's a 3 km route. With luck I'll make it all around in good time.

Vision still different than it used to be. I suspect either I am over my optic neuritis or just getting older - haha!
Might be time for another visit to the eye doc.

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

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.

Walkies?

A couple of weeks ago I was at the point of grabbing people walking down the street and shaking them by the shoulders and yelling in their faces, "Are you APPRECIATING THIS??? Are you enjoying that feeling of swinging along, not a care in the world, your legs just doing their job without question?"

It was kindof like during my marriage when I'd gone so long without a kiss I used to fantasize about grabbing strange men off the street and begging them to kiss me so I could remember what it felt like. Fantasize, mind.

You see, I was staring at my new rollator straight in the wheels and trying to imagine my life with the bulky but helpful thing and not succeeding. My muscles were twitchy and spasmy and my balance was shot and frankly I was more blue than the brilliant fall sky.
But bless this disease - for the last few days I've been able to walk - without pain, with my legs actually seemingly enjoying the travel.

It's been FABULOUS.

Have I mentioned it's been FABULOUS???

Of course, there are tradeoffs - I still do numbness, the PhD course, but I can move.
Well, sortof. Today, taking romping chutney out for his longer walk, I noticed a nasty twinge or two in my buttock. And the legs were somewhat less enthusiastic than they were yesterday, when I walked a lot and unloaded a truck and stood for several hours. Who could blame me - It was FABULOUS!

It doesn't matter if I slow down again now. At least I know I can still revert to my happy go walky ways. With any luck.
So, Mr. rollator, off to the cupboard with you! I know you're there if I need you, but for today I'm doing the solo thing.

Fabulous!

Oh blessed drugs!

One of the things about this foolish, changeable disease, is that you have to do so much self-management, sometimes in spite of your doctor. One can always hope to be on the same wavelength, but occasionally the focus differs and you have to think it through yourself. My neuro told me that the Baclofen I'd been prescribed by another doc for spasticity wasn't really needed in my case since I didn't have any spasticity.
Well, true, then I just had twitches, not spasms. So he gave me drugs for twitches.  Fair enough.

But I've been unable to walk more than a block without pain for weeks now. Some of it is no doubt due to the kidney stone thing, but even once it was gone, my legs weren't working together.  One foot spasmed regularly. Pain and I became close personal friends.  And as someone whose big kidney stone was found halfway down the ureter (and I was in minor discomfort), when I feel pain, it should tell me something.
So today I decided to try a baclofen.  And you know what? It worked. I just came back from my first fast walk in weeks. My legs worked together with my knees and I could hoof it as I like to, fast enough to satisfy even the rampant poodle.  My hips swung along like they are supposed to, easily, cheerfully, enjoying the movement. It was f-ing amazing.
Motion is so wonderful to experience when you've lost it for awhile. There is something so mystical about the way a body works together, the way the hip swings in the socket, the way the shoulders move within the framework of muscles, the support and flexibility of the spine.  I am almost giddy with the joy of it all. Those of you, who can move easily - go for a walk. It's a true gift.

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!

So, what was that?

A few weeks ago, I heard disturbing news about an associate of mine. He had been living with MS for years, with no flare-ups or issues. Yeah, his life was no picnic for other reasons, but his MS was quiescent and that made me look at him enviously.

Then, just after Christmas, he woke up paralyzed on one side. No notice, no foreshadowing. It was like a climax in a story with no lead up. Stunning, and a sharp reminder about the utter unpredictability of this disease.

So today, I was well-rested, happy, feeling good. Off I went to get groceries, looking forward to replenishing my scant cupboards. I get to the store, and the buzzies overcome me. Suddenly I am having trouble doing up my coat, feel unusual, and my brain is not functioning. I start walking away from the cashier, and my legs are considering a work to rule approach to walking back to my apartment.

At two points on the way home, I almost gave up and begged for help. My legs felt as if I stood still for a moment they would never move again. Even when moving, it required messages by telegraph and then letter to them to move them forward. The messages went slower and slower, and by the time I reached my doorway, I was exhausted.

Unlike the "walking through jello" sensation that is so familiar, this was more of a loss of communication. My legs weren't just moving slowly, they weren't listening to me.

I came home, crashed into a chair, gradually recovered. A few hours later, I decided to try a work out - just a casual 40 minutes or so on the Wii Fit, mostly Yoga. The legs remain spastic, hip joints sore, rest of my body aching and stiff. I feel like those old Barbie's that had their hair on a turner thing - you could pull it out and then roll it back in. My body feels like it is in the rolling in stage - all the ligaments pulled in tight.

It's a new sensation, and not one I like.

Reebok wobbly shoes

At last, at last - I have found the perfect shoes to wear to explain my wobbly walk. Reebok has designed a new set of shoes - called the "Easy Tone" shoes, that provide instability pods in the soles to help you work out your legs and bum muscles by making you unstable as you walk.
Finally a benefit to being unstable as I walk! Perhaps I am already increasing by 11-26% the amount of work my legs are doing as I wobble along? Maybe that's why I feel tired after walks, perhaps?
All I know is that I want a pair of these babies. Then when I stumble sideways into unsuspecting bystanders, I can gesture at the shoes and explain for once in a way that doesn't reference this disease! Huzzah!

Walkies!

In my town, curled along the shores of Lake Ontario, there's a wonderful free for the walking park called Lemoines Point. Today, with temperatures soaring to the high teens, I knew I wanted to go for a wander there, so I packed up Mavis (my cane) and picked up a new friend, and off we went.
When we got there, I stepped cautiously out of the car. My legs have been in pain for days now and I wasn't sure how they'd react. To my utter astonishment and child-like glee, my hips and legs worked FINE! No pain to speak of, I could stride quickly or slowly, my hips worked like they were meant to. I left Mavis in the car and threw caution to the winds and walked for about 4 km. And I could!!! It was wonderful.
Now maybe it was the company, which was quite lovely. Or maybe it was the sunshine and the birds and the cool but warm day, or the sparkling water shining through the bare trees. I don't know, but I am so happy to have had a days' respite!

Looking out from behind my face

It's early spring here in this lovely country town. I'm striding along, cane swinging artlessly from one hand, balancing me as I weave gently from side to side. It's warm enough to go coatless - an unspeakable gift - but not one to be trusted, not yet, not til the plants kick in...and Easter is past...and the nights get above freezing...
As I walk along the road, past the Greek-Canadian-Pizza restaurant, past the storage facility located unattractively beside the churchyard, past the huge Catholic church that looks benignly down on the town, too old to have much vigor, I marvel at the concept that I've lived for over 50 years. It just doesn't seem right. Inside my head, I'm still less than 30, still wakening to the sun on my face, on my arms.
The cane doesn't matter. It's the inside girl who does, the one who is mentally running, skipping, filled with the joy of spring.

Age is an issue of mind over matter. If you don't mind, it doesn't matter. Mark Twain (1835-1910)

Wheezing and wobbling in worn out shoes

Took my newly stabbed buttocks for a walk today - my first since my dear doggums went to another family who could play with him (as vs lie about and look at him). It was raining, so I had my Kansas City Star umbrella with me - it has all sorts of comic strips printed on it, including the ever-wonderful Calvin and Hobbes . It was a good thing, too, as the umbrella is tall enough to act as a light cane. It swings with a sufficient swagger to make the use of it as this less disabling than it appears.

So off I went, sauntering down to the post office, Queen's Radio Gah Gah playing in my headphones. It was the perfect pace down to the post office...

On the way back, I needed a slower pace - and I had stopped for coffee and a sit down downtown....The umbrella swung with more effect now, and my old running shoes developed a gasp to match mine - each step one shoe says "eeee", then "ahhh". Quite apropos.

Tomorrow, I'm wearing more cheerful shoes, to go with the cane I'm buying. It's all part of the new DA look - cheerful but deteriorating.

Acupuncture, or, Oy Vay, I have such a pain in the butt!

Went to my excellent physiotherapist today for an assessment of my legs as they are feeling distinctly weaker. She examined me and agreed, then suggested a technique she had tried for another MS patient that seemed to help her feel sturdier when she was walking. She inserted 3 acupuncture needles deep into my buttocks muscle, and attached them to a machine that sends electrical charges to make the muscles contract. She turned to electricity up to level 2, which was enough to make me cry out. The electrical current cycled on and off for 10 second bits for 15 minutes, then we switched over and did the other side.
Well, I'll wait to see what things are like tomorrow, but OH MY GOLLY, I am not a happy camper right now. My bum muscles are in serious spasm and my whole leg is unhappy, alternately sore and just plain toothachey. The rest of my body seems to have decided that since one part is cranky, the rest should get in on the act, and my neck and arm muscles are tense and sore.
So, I'm off with an antispasmodic to reduce the pain and a cozy bed to warm the muscles into relaxation. With luck this punishment will mean I can walk better tomorrow....

Thinking of disability...

I am reviewing disability and hoping to persuade my doc that I qualify ASAP. I meet with him on Monday and am arriving bringing forms and etc. to start the process. Then I plan to sell this place and move back to Kingston to a little apartment with air conditioning and try to get ahold of this disease. I just don’t think I can keep up anymore.

Yesterday I walked ¾ of the dog block here (downtown and back) and then could NOT walk the last ¼ - I felt fine but the legs wouldn’t work. I had to swing my arms mightily to get them going and was puffing and completely out of breath by the time I got home. And I’m still almost completely numb – today I found one spot where I still have sensation (my right armpit). Handy that, in case I run into any sharp or hot objects with my armpit! I mean, should I be walking about with my arm raised just in case?? Drafty. And odd.

After my walking thing yesterday I thought - dammit I have got to get in better shape - so I did my MS exercise DVD (free from one of the meetings I went to). So I go through it all and everything is doable, except marching in place. I can't get my arms and legs coordinated, and I end up lifting the arm and leg on the same side together. I try to readjust, but it still doesn't work. Bizarre. We do the aerobics part three times during the whole workout and EACH TIME IT’S THE SAME. It's like I am sending messages and my body is misreading them. No wonder I am such a failure at stepping in time to the Miis on the Wii...and, on the good side, this gives me the final undeniable reason why I will never have to go to aerobics classes. Which I never wanted to do anyway. And it might even work in speed skating…or, ahem, maybe not…

I dunno. You’ve got to admire this disease for keeping things interesting. I mean, if I had cancer, or a stroke, or whatever, every day would just be more of the same. This way I have the excitement of finding something new each and every day. Refreshing. I have an internet MS buddy who is a social worker with a wild sense of humor – she and I are talking collaboration on a book that will be an answer to all those perky “You can overcome anything” books written by the independently wealthy. It will be bitter, biting, funny as heck, and filled with all sorts of details you probably won’t want to read about your mother.