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.

Hope for a Better 2015

Most of 2014 was pretty much a write-off. Oh, it started great (visiting my daughter and friends in Oz and NZ) and it ended great (my daughter and Simon visiting for a long spell at Christmas and New Years, and even Ukrainian Christmas), but most of the time in-between I was not feeling great. I had no appetite and lost 25 pounds, didn't feel much like doing physio, Pilates or yin yoga, had problems sleeping and/or sometimes was sleeping too much. Sure, I did have good things happen - friends from Oz visited, we spent quality time at the cottage, my mobility scooter made life easier and more fun - but things just didn't feel right. Finally, just after the annual Harvest Jazz and Blues Festival, it hit: a streptococcal infection in my spine, next to my spinal chord in the L3, L4 and L5 vertebrae area.  This caused huge and very painful back spasms and my MS symptoms (especially related to weakness and mobility issues) to hit the roof. The surgery required shaving away some backbone to drain the abscess, hopefully reducing the spinal stenosis that may have led to much of my hip and sciatic pain in my left leg.

I really don't remember a lot about those times. I hardly even remember my daughter visiting me the first time. Maybe some of it (pain, horrible and embarrassing MS symptoms) I just don't want to remember. I do remember progressing from not being able to transfer from one chair to another without help to being able to do short walks with a 2-wheel walker. Luckily, I got out of hospital two days before my son left for his teaching job in China.

Since my operation on October 4th, I've been recuperating steadily but slowly, though the improvements seemed to have stopped now, perhaps even regressed a little, with stomach upset seeming to be an ongoing problem. Given all the penicillin I got (mega-doses for 6 weeks after the operation), it shouldn't be an infection anymore, though it could be that my stomach ecosystem hasn't yet recovered from all the antibiotics. What has improved greatly and stayed better is a huge reduction in pain in my left hip and leg. I hope that is due to the removal of the spinal stenosis, but it could be also due to the reduction in my walking. While I progressed to a four-wheeled walker and, finally, to using poles and a cane again, the winter weather and ice and snow keep me inside and sitting a lot. I sure hope no more health problems keep me from taking our 5-week vacation in Costa Rica at the end of this month.

I wish all of you a happy, health and prosperous 2015.

Sunday, November 16, 2014

Almost Two Months of Hell

On September 24th I was taken to emergency at the DECH in Fredericton with acute back spasms. After a week of diagnoses and painkillers, I was taken to the neurological unit at Saint John Regional Hospital. On October 4th they operated on my back, removing an epidural abscess caused by streptococcal infection. After some healing and then physio in Saint John, I was brought back to the DECH for a few days, getting home on October 20th. Since I've been on a antibiotic pump that gives me a megadose of penicillin every four hours, with extramural nurses coming to our apartment to refill it every morning. As of last night, I'm finally free of that!

The infection really ramped up my MS symptoms, to the point where I was not even able to transfer myself from one chair to another. Since the surgery I've gained some of my strength and balance back, but I still have to use a walker to get around, which means I’m still much worse than I was before I was infected. In particular, it really feels like the vertebrae in my lumbar region [where the surgery was] are rubbing against my spinal cord causing much more spasticity in my walking. I've been wearing a back brace when I'm sitting up in a chair or walking around for any distance, but I don't know that it's really helped reduce the spasticity, especially now that my back is somewhat stronger. I'm hoping that, when my healing is finally done, I'll be back to being able to do what was normal for me before the infection.

On the bright side, I can always hope that the surgery has reduced the stenosis in my spine. Certainly my hip and sciatic pain (and some other symptoms) are way less than before my surgery. I don't know if that is due to surgery or just the fact that I'm not moving around much these days. Guess I'll have to wait and see.

Between the infection and painkillers, I was in a fog for most the time that I was in the hospitals. I hardly even remember my daughter’s first visit (before surgery). I'm sure glad that I got home before my son left for his teaching job in China, and that my daughter had a second opportunity to visit us at home.

Saturday, October 4, 2014

My Spinal Surgery: Will It Help MS Symptoms?

For those of you who weren't aware, I've been in hospitals (Fredericton, Saint John) for the last 1 1/2 weeks. It started as painful lower back spasms (L3,  L4 & L5) on Tuesday the 24th which could only be semi- treated with morphine, and super elevated MS symptopns: couldn't walk at all, completely exhausted and dizzy, etc. An elevated temp suggested they should check blood cultures and start a regime of antibiotics. When they got the cultures back, they were able to detect that I had a bacterial infection. The pains I had been getting were being treated with a coctail of penicillins (which had since migrated to the tail-bone, and were no longer spasms) suggested I might have spinal infections. As my temp ( and infection) went down, my MS symptoms improved. (NOTE: These MS symptoms waxed and waned for a few days at the same time my temp went up and down a few times).

Then I was transferred to Saint John hospital, so the neurosurgeons there would advise whether surgery was a valid treatment for my problems. Eventually they did.  For me there was the added potential benefit of removing or reducing a stenosis in my L3/L4/L5 area, a stenosis that may have been contributor to poor walking, pains in my lower back, and general weakness.

I had the surgery this afternoon.  There was at least one big spinal - area abscess filled with pus they cleaned out. I didn't talk to the neurourgeons yet, but will find out the details tomorrow regarding things like the stenosis. My hope is that this spinal surgery takes me back, symptoms-wise to where I was when I came back from CCSVI treatment in Poland in 2010. You'all cross ya fingas now, ya hear? :-)

Sunday, August 17, 2014

Wild Turkey and Ganja

It's over four years  since the CCSVI treatment I had in Poland gave me back my balance, most of my energy, and greatly improved my bladder issues. These are no small things, but the treatment did nothing (as far as it’s possible to tell) for the continued weakening of my left arm and leg (including foot drop). As these symptoms continue to get worse, my walking has become more unnatural, thereby leading to hip and knee pain. That, along with pain symptoms from my osteoarthritis and degenerative disease in my spine, means I’m in pain (or at least great discomfort) almost all the time, and I’ve had great difficulty sleeping.

Besides arthritis medicine (which I know helps because of how my arthritis flared up when I had to go off it for several months), I have no other traditional medicine for the pain, in part because of all the potential side effects of the pain medication. I do yin yoga (helps quite a bit) and have acupuncture/massage once in a while, but I find that the most effective immediate (very short term) relief for some of the pains is a good shot of whiskey (Wild Turkey bourbon is best) and 9/9 (9% THC and 9.5% CBD) marijuana just before going to sleep (takes the edge off the pain and makes me drowsier so I can fall asleep). I also have a prescription for 22/1 marijuana for pain during the day, but am not taking it since I can still drive.

So, my question is: what are other MSers experiences with taking high THC marijuana throughout the day for pain, spasms or fatigue reasons? I guess I would like to know what, besides my losing the ability to drive, might be the trigger points I should consider that tip me over the edge to starting to take high THC grass. By the way, there are days I don’t have to drive at all, so I could experiment with it on those days.

Time to Stop Baclofen?

I visited my Neuro on Tuesday, were she suggested, among other things, that I up my dosage of Baclofen since I seem to have been tolerating it so well. However, since adding one more pill per day, I have felt weak and dizzy. It suddenly struck me that baclofen could be the cause of my increasing weakness and reduced balance. I'll be back to my normal dose today, then ask the neuro how quickly to reduce the dosage to zero so as to try life without it for several months.  It'll almost certainly be a trade-off (more leg spasms, less weakness and dizziness), but going off it for a while should give me a better idea of what those trade-offs are.

Monday, July 7, 2014


Just got this note from a SPMS friend:
Hi Ted glad to see you are doing good. Wonder if you heard of the medication Simvastatin which is use for lowering bad cholesterol in your blood ,this medication is used on patients with Secondary Progressive MS, high dosage 80mg, it seems to have good results for slowing down the progression , this of course is still clinical trial,but it's something. I am starting on it. Your opinion would be appreciated since we have the same type of MS .My neurologist agreed with me so I am excited about it. Best Regards.
Has anyone else out there had experience with Simvastatin for SPMS?

Tuesday, June 10, 2014

Still on the Weed

I've been on marijuana from CanniMed for a couple of months now. Though I was prescribed two kinds of marijuana (one with high THC for energy for the day time, one with high CBD and lower THC for pain and sleeping), I find that I am only using the high CBD weed to help me sleep (in part by reducing pain). I just can't imagine using the high THC strain during the day while I can still get around on my own.

The two strains I'm getting from CanniMed are the 22-1 (22% THC, 1% CBD) and the 9-9 (9% THC, 9% CBD). Though I've just ordered a second batch of 9-9, I'm still not sure if CanniMed is a good provider. The first batch was not completely dried and so didn't grind well - plus made me worried that it would be mouldy. I'm not crazy about the smell of their stuff, either: both strains have a kind of "medicine" aroma I don't care for. However, the way things are set up by the government, I don't think I can easily switch suppliers . To do so, I'd probably have to get the doctor to fill out all the documents for a new supplier (at the cost of another $60).

By the way, my Arizer Solo vaporizer has been working great (so far). Vaping is definitely the way to go. A lot less harsh on the throat, and when I'm vaping, people in the same room can hardly smell it.

MS and Trauma

Though this paper suggests that there is not evidence from good quality research to tie physical trauma to the onset of MS, I had a very bad body-surfing accident less than 4 months before my first MS symptoms and have always wondered if there was a causal relationship.