Wednesday, August 9, 2017

Marijuana Field Research

In order to reduce pains (arthritis, MS) and stomach discomfort, I have been trying various strains and substrains of marijuana and, more recently, various product types: shatter, oils, tinctures, pills and other edibles (brownies from a Mary Jane mix). I think I'm honing in the strains and products to get me through the day.

I recently tried some 25 mg THC pills and found that they were great for reducing and even preventing pains... and giving a light buzz for about 6 hours. The effects start in about 1/2 hour after taking the pill, ramps up for another 15 minutes, then maintains its efficacy for another 5 or 6 hours. I think that the first ones I bought were Indica-based, which tends to make a person more drowsy. I want to try some Sativa-based pills in the future.

I also have an oil-based Sativa tincture. A few drops under the tongue and I feel better for a few hours. Its much more fast-acting than marijuana edibles (like the pills above) because it is absorbed quickly when taken sublingually. I think that this tincture also works to prevent pain, so is best taken before the pain or discomfort gets bad. Four drops gives about 12 mg of THC, which is about as much as you can hold under your tongue for a while until you have to swallow it. What you swallow isn't wasted: it just takes longer to affect you.

The brownies I find to be much too sweet, though if I stay up late enough and get the munchies, a half a brownie goes down very nice.

Of course, the fastest way to get marijuana-based relief is to vape or smoke dry weed or concentrates. For the day-time, a high THC Sativa weed or concentrate (like shatter) that doesn't make me too sleepy can be used as a quick pick-me-up on bad days. In the evening, just before bed, I vape my old standby: a 9/9 (%THC/%CBD) dry weed from Cannimed that usually helps me get to sleep quickly (along with sleeping pills). If I have a severe pain just before I go to bed, I take whiskey to calm it down. Sometimes I take whiskey even if I'm feeling no pain. 😁

It is now possible to get all these products from online dispensaries (usually based in BC) without a medical marijuana prescription... you just need to send them a digitized copy of government-issued ID. There are quite a few dispensaries that sell quality-controlled products and provide very clear information about what is in it. Contact me if you want to know more.

Wednesday, March 29, 2017

Changes

My last MRI showed more plaques and a shrinking hypothalamus. Not good news, but not surprising.

My mobility is quite obviously getting worse: mostly because of the weakness in my left leg and arm. Except for really short distances where I use my poles or a cane and someone's arm, I am only able to get around on my small scooter  (EV Rider Transport) which I use in the apartment and to the YMCA and in malls/restaurants, etc. I would recommend this to anyone that still has balance and enough strength to transfer yourself to chairs and so on.

My pain continues, especially in my left hip. Since my back surgery over two years ago, my sciatic pain continues to to be almost non-existent. Lower back pain, however, continues to get worse due to my osteoarthritis.

Pain is also the reason that my stomach is often upset. For pain I take neuro pain killer, Tylenol, marijuana and whiskey. Usually they work well enough to allow me to fall asleep. I would like to use less whiskey because it causes a poorer night's sleep... but that is still better than falling asleep at all.

My night spasms are almost gone: Baclofen and marijuana takes care of that. I rarely nap during the day any longer and seem to have more energy during the day. That may be because of the Modafinil I'm now taking.

I still do some exercises (when I'm not feeling lousy), either at physio, the pool, or at home.

But the real change for me is that my kids have both moved back into town from overseas AND I have a beautiful 9 month old granddaughter who has greatly increased the joy in my life. Pain or stomach upset, it doesn't matter... all I have to is think of her and my day feels so much better. I would recommend it to anyone!

Monday, December 19, 2016

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.

Thursday, May 5, 2016

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!

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 (http://store.medpotnow.com/super-premium-electric-kush.html). 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.