Thursday, May 5, 2016

Six Years Later - Part 3

There are many ways and things I use to cope with my various problems:

  1. First and foremost among my coping "mechanisms" is my wonderful wife, Mary. Without her help and care, my life would be very different and my quality of life would be abysmal. Mary is my caregiver, my taxi-driver, my advisor and friend. Without her most of the rest of my coping mechanisms would be less useful or even impossible. 
  2. Exercise - I go to the physiotherapist twice a week for most of the year. I'm lucky to have a physiotherapist who is willing to work with me despite knowing that the best we can do is win small temporary victories. I work out in the pool three times a week, except when I'm away or am feeling my occasional sicknesses. One day a week I have a half hour, one-on-one Pilates instruction. A few days a week, I do some Pilates and physio at home, unless I'm not feeling well. Two or three times a week I use EMS (muscle stim) on my left leg and my left arm. I used to do yoga a few times a week, but after my back operation I stopped due to back pain and weakness. I'd like to start again, if I can find someone who can take the time to figure out what would work for me now without risking my back too much.
  3. Drugs - Lots of pills: for arthritis, nerve pain, leg spasms, cholesterol, and stomach upset (caused by some of the pills I take. I also take sleeping pills and my "happy" pills. For daytime discomfort and especially to help me sleep, I use marijuana. When the pain in my hip or back or when my stomach is real upset, I use whiskey: Wild Turkey bourbon is my favourite. 
  4. Mobility - While I can still get around with my poles or cane for short distances (maybe 100 meters max), for anything longer I use my scooters. I have my big scooter for longer distances and rougher terrain to go "scwalking" with Mary or "scjogging" with my daughter, Anna. I also have a small, foldable scooter for inside malls and buildings that Mary and I can lift in and out of the back of our car. I have also recently purchased a second (second-hand) big scooter to use at the cottage so we no longer have to trailer my other big scooter back and forth from home.
  5. Kindness - A big help to me is that my family and friends and strangers go way out of their way to make my life easier and to put up with my stumbling and shuffling. Nice people.
There are many other coping mechanisms I use, big and small, to make life easier for me, but those are the main ones. In my next post I'll talk about my future... and it's not all bad news!

Tuesday, May 3, 2016

Six Years Later - Part 2

The Bad News: 
  1. The weakness on my left side (arm and leg) has gotten much worse, meaning that I can't walk at all without a cane or poles, and even then only short distances. Stairs are becoming a real hassle, since it's getting really difficult to lift my left leg. Due to my poor walking and the icy conditions, Mary has taken to driving in front of the apartment building to pick me up, which means I haven't driven the car since last fall.
  2. My footdrop continues to get worse, to the point that when I'm tired or have had a few drinks I end up just dragging my left leg behind me.
  3. While I'm not as fatigued as before my liberation treatment (having to lay down, completely fagged out, four times a day at its worst) I am now having to have a nap after lunch... sometimes lasting a couple of hours or more. Strangely, if I have something particularly interesting to do, I don't feel the need for a nap.
  4. Ever since my spinal surgery a year and a half ago, the arthritis in my lower back has gotten much worse. This means that I regularily have lower back pain to the point that I feel nauseated. As well, the arthritic back, perhaps rubbing against my demylinated spots on my spinal chord, causes my left leg to spasm, sticking straight out for a few seconds after I get up out of a chair or out of bed or even resisting bending my left knee when I'm laying on my back and want to draw my leg in. It feels like my quads are turning on at the same time as my hamstrings. My physiotherapist has learned that stretching the quads reduces that reaction, at least for a few cycles of exercise.
  5. I seem to get stomach upsets fairly often, perhaps related to back pain and/or the very light flu-like symptoms I seem to feel every once in a while. When I get those symptoms (once every few weeks, lasting a few days), my eyes burn, my head feels stuffed up and my MS weakness gets worse.
  6. While my balance is still a bit better than before my treatment, it has gotten much worse in the last year or so. Of course, it's often hard to tell how much of that is due to lost balance and how much is because of a barely responsive back leg.
  7. I've had bad left hip pain and sciatic pain for many years (as my left leg and glue atrophied prior to and after my back surgery), but since the back surgery and my physiotherapy to bring back strength to my legs and glutes, most of the sciatic pain and some hip pain is gone. 
  8. My last MRI was not encouraging. I've got two new lesions on (in?) my brain, and my cerebellum is beginning to atrophy. At least now I have an excuse for my increasingly bad memory. 
That's the main part of my bad news. In my next part I'll talk about what I do to cope with these difficulties.

Sunday, May 1, 2016

Six Years Later - Part 1

I missed the actual anniversary by two days. On April 29th, 2010, I was "liberated". Soon after that I saw big improvements in several symptoms: in particular my autonomic functions,  my balance, my fatigue. Previous to the procedure, I was expecting to be in a wheelchair within a year. So where are things six years on? Well, there's good news and bad news. 

First the good news. My autonomic functions are still way better than they had been prior to my procedure. I haven't seen my urologist in years: he told me to only come back if things got worse again - and they haven't. My fatigue, while it's often enough a problem, is still way better than it was on April 28th, 2010. My balance is finally getting worse again, though probably still a little better than before the procedure. I'm still not in a wheelchair. 

The bad news? Well, there's quite a bit with respect to those things that the liberation procedure didn't help in the first place. However, I'll leave that for my Part 2 of this series of posts.

Tuesday, January 5, 2016

New Research on Vitamin D and MS

Happy New Year!

Scientists and health-care advocates are encouraged by new research that has found vitamin D may help repair damage to myelin — the protective sheath surrounding nerve fibers — in people with multiple sclerosis (MS).

The study, conducted by the University of Cambridge in England and published earlier this month in the Journal of Cell Biology, offers significant evidence that vitamin D could one day be used as a treatment for MS.

Researchers from the MS Society Cambridge Centre for Myelin Repair found that the vitamin D receptor protein pairs with an existing protein, called the RXR gamma receptor, which has already proven to help repair myelin.

The study, led by Professor Robin Franklin, determined that the production rate of myelin-making cells (oligodendrocytes) increased by 80% when added to brain stem cells where the proteins were present.

Further study is needed to determine whether the results found in the lab hold true in patients with MS during clinical trials. 

An estimated 100,000 Canadians have MS — the highest prevalence rate in the world. The Vitamin D Society, a Canadian non-profit group organized to increase awareness of the many health conditions strongly linked to vitamin D deficiency, is following the research closely. The organization encourages Canadians to be proactive in protecting their health and have their vitamin D levels tested annually.

In Canada, approximately 12 million Canadians do not meet vitamin D blood level requirements of 50 nmol/L set by Health Canada and the Institute of Medicine. This figure rises to 14 million — 40% of us — during winter months.

Saturday, July 18, 2015

A Day-Time-Pot Discovery

I've been trying several different strains of pot over the last couple of months, trying to find something that helps with pain and/or gives me a psychological lift during the day. I've found one that I think I'll stick with: Special Premium Electric Kush ( It isn't perfect, but ithe gives FAST, fairly LONG-LASTING pain relief and a bit of a high without too much dizziness or loss of balance. If you want some help with those symptoms, you might want to give it a try.

Saturday, June 13, 2015

Heat Intolerance

I think my heat intolerance may be increasing. The normal symptom is that the lower half of my left leg swells a great deal when the temperature is high but, more recently, I've found that I have less strength and more stomach upset in hot weather. I can certainly still enjoy a warm (or even hot) day for a period of time, but if I'm in the heat (especially muggy heat) for a while, I start to see the effects.

Update on My Weed Experiences (Part 2)

Lately, I've again started feeling lousy during the day (somewhat like I was feeling for almost a year before my back surgery). That has made me rethink my decision not to use Marijuana during the day. Also, since Mary is now retired, as well, my need to drive during the day has declined since she can usually do the driving.

But then my problem was to find the right strain and sub-strain of weed that would reduce the daytime nausea, stomach upset (and sometimes pain) while energizing me and not make me drowsy. The 22/1 Cannimed product I got for that purpose seemed to make me too drowsy, but how could I try other products from other companies without going through a long, time-consuming process of registering with another company. After a search on line I found a dispensary in Vancouver that would mail me a "variety pack" of one gram samples of several sub-strains and hybrids that might give me the effects I wanted. I still needed to register and provide a copy of my prescription, but the whole process, including ordering the variety pack, was completed in one day, rather the several weeks it takes with Cannimed.

I've tried two of the five sampler products I ordered from the Vancouver dispensary and, so far, haven't found one that I'm completely satisfied with. I'll just keep trying.

Update on my update: Just tried my third sampler. Chocolope OG seems to be working much better than the others I've tried. Nice. Two more to try in the next few days, then I'll probably go through them all one more time to make sure.

Friday, June 12, 2015

Update on My Weed Experiences

I've been using marijuana for just over a year now, and it's time to tell you what I've experienced, so far.

For most of that time I've been using a 9/9 (9% THC, 9% CBD) product from Cannimed, one of the suppliers licensed by Health Canada. That particular product has helped me with pain and insomnia, so I take it just before bed, using a Solo Arizer vaporizer. It may help with night leg spasms as well, but since I've been on Baclofen for most of that time, it's hard to say.

I haven't followed the doctor's advice about taking a daytime version because some of my worst pains have been reduced since my back surgery in October. However, lately some symptoms I've been having have made me rethink that. I'll talk about that in my next post.

Friday, February 27, 2015

Still some pleasures possible

We've only got a week and a day left here in Samara, Costa Rica. The weather has been great, maybe a bit hot (my left foot swells like a sausage in the heatand it's been a dry 35 almost every day), but I get into the pool for a couple of physio sessions every day. Our place (Villas Kalimba) has been perfect: great accommodations, nice pool, close to the beach (though I haven't gotten into the ocean yet - waves are too big). Internet connections were a bit flaky, but given the number of devices connected in the 7 villas around here, it's not a surprise. We're closed to many restaurants I can get to on my poles, and many other we can reach with my wheelchair. We make quite a sight, I'm sure: my sister Marilyn opening the road, Bela the dog behind her, Mary pushing me in my "mustang" wheelchair, Gerri behind all of us holding my poles like they were spears.

Wednesday we all went up for gyrocopter rides at a place a few miles out of town: it was a wonderful experience: 

Thursday, January 1, 2015

Grass, Baclofen, Wild Turkey, Sleeping

It's been over 8 months since I started taking medical marijuana for pain and to help me sleep. I've rarely taken the daytime stuff (22% THC, 1% CBD), but every night I vaporize a small dose of the night-time version (9% THC, 9.5% CBD). Lately, I seem to have gotten my bed-time routine right: two zopiclone (sleeping pills) about 1 to 2 hours before I intend to sleep, and then a dose of marijuana 15 minutes before sleep (it takes about 10 minutes to vape it). I haven't had a sleepless night for a month, almost always falling asleep between 1 and 2 AM. There have been times, though, when the residual discomfort or small pain in my incision site have also caused me to take a good stiff drink of Wild Turkey (bourbon whiskey). While the grass takes the edge off the pain, it sometimes isn't enough if I'm not too sleepy, and the whiskey quickly dulls pain and makes me sleepier. It's very short relief, but usually enough to get me to fall asleep, and then I sleep all night.

Just before my infection, I had stopped taking my baclofen because I thought that might be what was making me feel week and tired. Now I'm back up to 4 a day to help resolve my night leg spasms that were coming back. I may even go up to 5 and see if that works better.

By the way, after a lifetime of sleeping on my stomach, during my hospital stay I learned to sleep on my side. In the mornings my lower back arthritis is much better than it used to be, and I'm sure that sleeping positions have a lot to do with it. Now if I can just find the right combination of head and body pillows to keep my spine straight, I'll bet I'll be able to reduce the pain even more.