Fampyra

I'm trying out the drug Fampyra, which is intended to help with walking. Apparently it helps about half the MSers that try it. I've been on it for three weeks. I did a walking test before I started the drug, then another one today. These are the results:

• At my preferred walking speed, my pre-Fampyra times averaged 20.5 seconds, while my time after three weeks on the drug was 13.3 seconds.
• At my fastest safe walking speed, my pre-Fampyra times averaged 16.5 seconds, while my time after three weeks on the drug was 10.8 seconds.

It appears that Fampyra is another drug I'll be on. There may have been some side-effects the first week (perhaps a little more fatigue and stomach upset), but those symptoms are so changeable that it's hard to tell if it was a reaction to the Fampyra.

As a side note, Fampyra may be helping a little with my ability to lift my lower leg using my hamstrings while on my stomach (or, perhaps, stopping my quads from kicking in while trying to use my hamstrings). At physio last week I had better results for that exercise than I'd had in a year.

Six Years Later - Part 3

Coping
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!

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.

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.

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.