Changes

It's been a long time since I've posted, mostly because there are few big things that have occurred to me in that time period. In the wider world, there have been reports of possible MS treatments (such as the stem cell theory), but nothing that I would trust to try. When I took a chance on CCSVI treatment in 2010, it was after many months of research and a conclusion that the hypothesis made sense. Almost 9 years later and the improvements I gained after the treatment (balance, autonomic functions, fatigue) continue to this day. So why do I look at all the new drugs and procedures with so much skepticism? I guess it’s because I’ve seen so many MS scams and, while I was excited about taking a chance in 2010 on something that made sense to me, I haven’t seen anything like that since.

So, how are things for me these days?

• I am now in a power wheelchair (Permobil F3). I still use my small foldable EV Rider Transport for car trips out of the apartment since I don’t want to buy an accessible van until I have to. So far, my upper-body strength is adequate to use the small scooter when we go out. I no longer drive since I can’t get into the vehicle myself: someone else has to load it into the back of our SUV. 
• I can still transfer (usually safely), but I can only walk in the therapy pool at the YMCA. We plan to go three times a weak, but it rarely works out that way because of other appointments or being sick. This week, for example, I’ve been battling a light cold… it may only be a slight cold, but it’s still enough to dissuade me from going. I get weak very quickly if I even just have a light flu or cold.
• A similar sort of weakness occurs when I just do a bit of work on my knees or on my haunches. I’m often so weak after a little effort that I can hardly get back into my chair again.
• My left foot and hand are almost useless… which means that the arm and leg are getting weaker from lack of use. You should see my right arm, though. 
• Almost constant pain or discomfort is a drag. Some of the plethora of pills I take help (Arthrotek for arthritis, for example), but marijuana oils and distillates (Sativa-dominant during the day, Indica-dominant at night) help a lot, especially if I remember to take enough before the pain gets bad. When the pain is too much for marijuana to handle, I use whiskey, but with all the drugs I’ve taken for so long my liver isn’t in great shape so I have to find an alternative. 
• I’ve partly “smart-homed” our apartment and cottage. Some lights, the front door lock/doorbell/camera/mic/speaker (at the apartment) and my entertainment systems can almost all be controlled by my voice. I’d love to find some reasonably priced smart door openers/closers that would be compatible with Google Home. 

Despite my health problems and the cost of coping, I’m still quite happy. My family and friends make life worth living, and having our kids in town (not even just in the country) is marvelous. And my little granddaughter is such a joy to me that I have to smile every time I think of her. 

I read a lot and participate in Twitter and Facebook conversations. I want my kids and their kids to live in a healthy democracy in a healthy environment, so I’m doing what I can to challenge climate change deniers and lying, bigoted populist politicians.

Life goes on. 

A letter to Senators

I sent the following letter to a bunch of Senators:
As a disabled medical marijuana user for four years (I have MS), I would like to make a few comments from my point of view concerning the legalization of marijuana. 

I started by vaping dry marijuana, but have lately moved to two types of marijuana oil capsules (daytime with higher CBD, nighttime with higher THC), along with vaping a concentrate if I need extra pain or insomnia medicine. This has made my quality of life so much better. However, the ridiculously harsh penalties for marijuana possession over one ounce and idiotic provincial government monopolies mean that I will no longer be able not legally get my medical marijuana:

1. I can not legally get oil capsules. Right now I have them sent from dispensaries in BC. These "grey market" products are available from trustworthy and knowledgeable providers. As the federal and provincial governments crack down to ensure provincial monopolies, these dispensaries will be shut down. As far as I'm aware, no licensed producer has oil capsules for sale (certainly mine doesn't, and the rules make it a hassle to change providers). In order to have my own made, I have to buy dry weed, give it to someone who can make it into oil, then into capsules. I'm allowed 2 ounces of dry weed per month. If I hand that to someone to make the oil capsules, we are both doing something illegal. Ridiculous. 
2. Some legal producers have started making marijuana oils. These cost at least 50% more than if I get them from the grey market, and each licensed company has a small number of types (strains, sub-strains, THC/CBD %, etc). I would have to get what I need from more than one producer... yet I'm only supposed to use one licensed producer. 
3. Many licensed producers don't even indicate what strains are used in their dry weed or oils. Some grey market products don't either, but I don't buy those products. I want to use sativa-dominant strains during the day, and indica-dominant strains in the evening.
4. No licensed producer has shatter. Waiting until 2019 for relief is not an option. Edibles won't be available 2019, probably at ridiculous prices. Edibles aren't that important for me, but for some folks it's their preferred method. Many cannot make hard candies or jellies themselves.
5. CBD is not psychoactive, yet to get a true CBD oil (there are "hemp" oils in health food stores, but we don't know how much CBD is in it) we have to go through a licensed producer. Again, the price is way higher, the provenance is not provided, all for a non-psychoactive product that should be available to anyone without any prescription. CBD oils (even with a smattering of THC) should not be a controlled substance at all. The same goes for CBN and all the other 80 or so non-psychoactive cannabinoids. 

I'm happy weed is going to be legalized, because there won't be people charged or fined for using something that is so benign compared to alcohol and tobacco. I am not interested in using marijuana recreationally, but other people do, and I'm fine with that. We do need to find ways to catch THC-impaired drivers, but we have had that same issue for years with illegal marijuana or legal drugs, and before breathalyzers, we had that problem with booze. All this hoopla about huge increases in policing is just a way for provincial governments and police departments to greatly increase their budgets on the backs of buyers.

I would hope that sober second thought will lead to a better law and regulations. As it is right now, medical marijuana users are collateral damage. We'll no longer have access to the meds we need, while ridiculous laws and regulations mean that, at the discretion of police and prosecutors, people can still be sent to jail for getting their meds. 

Edward Robak 

The Story Continues

Life is good. There, I said it. Despite the disability, the discomfort and the pain, I'm quite happy. I've just passed the 8th anniversary since my CCSVI treatment in Poland, which is still helping some of my symptoms). Here is why my life is better (well, relatively, at least):

1. I have a great caregiver (my wife, Mary) and good support from family and friends. Love them all.
2. My daughter and her family and my son now live in Fredericton. It's so great to see them several times a week.
3. My granddaughter Eva is the apple of my eye.  She is almost always happy and is growing like a weed. When she brings me a book to read and looks up with a big grin, my heart skips. Never underestimate the power of a grandchild to improve your life.
4. I tamed my IBS. Until we figured out what to do (diet change) I hardly had a day without stomach problems.
5. I'm getting exercise on a more regular basis, in good part because I no longer have stomach problems every day. Three days a week at the pool, exercises and stretches every other day, and physio once a week.
6. I think I've got my marijuana consumption just about right: high CBD/low THC Sativa-based oil in the daytime, High THC Indica-based oils in the late evening. While I'm getting some from a licensed producer, the widest variety of products (and least expensive) come from well-established dispensaries in the grey market. I'm worried that, when it's legalized, the provinces will clamp down on the grey market, leaving medical marijuana users with no options.

Overall, with those changes, my quality of life has improved greatly. Crossing my fingers.

More Marijuana Field Experience

In the last couple of months I have been trying to move towards mostly edibles, pills, tinctures and mists, away from smoking or even much vaping. Other than an occasional stomach upset when I take certain kinds of THC pills on an empty stomach, I could easily see myself moving completely away from smoking and vaping, except for enjoying a bit of Indica concentrate to vape in the evening. I've been experimenting with times and strains and amounts. This seems to work on average days:

1. Sometime after lunch I take a 40 mg THC capsule (it looks like finely ground green marijuana, but it's been decarboxylted and may have some THC oil in it to reach the right THC content). It's not clear if these pills are Sativa or Indica, but if I could choose, I would go with Sativa for daytime. It takes anything from 45 minutes to 2 hours to start to feel the effects (a mild high), which lasts a few. Once I run out of these capsules, I'll probably move to cannabis-infused oil capsules that have a more immediate and consistent effect.
2. Through the afternoon and evening I may vape some high-CBD Indica weed. There's not any kind of high to speak of, but it does seem to settle my stomach and reduce muscle pain. I'd prefer to try Sativa, but would probably go for a high CBD oil, if I could.
3. In the afternoon or evening I may use a Sativa mist or tincture sublingually, again to reduce discomfort and pain. I have learned NOT to buy high alcohol tinctures and mists because the pain of having pure alcohol under my tongue is too great. The oil tinctures are usually 30 mg per ml. I have taken to refilling the 8 ml mist bottles with bourbon and 250 mg THC oil pills, giving about 3 1/2 mg per spurt.
4. In the late evening I'll have a 50 mg Indica THC oil pill an hour or two before bed. That, and vaping some Indica concentrate usually put me to sleep nicely.
5. If the pain is REALLY bad, I use whiskey, but it seems that, if I head off the pain with marijuana, I don't need whiskey as much.

Note that almost all of these products come from the grey market since licensed producers offer very few of the products i want and when they do have them they are three times the cost of the grey market.

Primer on marijuana extracts

A primer on the various kinds of marijuana concentrate extraction methods and the resulting products. What it doesn't do is stress the importance of the strain and substrains used to make the extracts. A general strain rule for me: Sativa-dominant strains in the daytime, Indica-dominant strains before bed.

Click here for the Extract Primer

Interesting new technology for early detection of autoimmune diseases

This sounds interesting:

CYREX LABORATORIES INTRODUCES SALIVARY ASSESSMENT FOR EARLY AUTOIMMUNE DETECTION

Mucosal Immune Reactivity Screen is First to Encompass All Areas of The Cyrex System

PHOENIX (OCTOBER 10, 2017) – Cyrex Laboratories, a clinical laboratory specializing in functional immunology and autoimmune reactivity, continues to revolutionize the way healthcare professionals approach immune reactivity and intolerance. Today, Cyrex Laboratories unveils the Array 14 Mucosal Immune Reactivity Screen™, the first and only test capable of assessing mucosal immune reactivity in saliva as it measures SIgA and SIgM (Salivary Secretory Immunoglobulin A and M).

Early diagnosis of autoimmune reactivity is an essential step toward minimizing the severity and impact of a patient’s symptoms and condition. Mucosal production of IgA and IgM antibodies appears to be an early event in immune reactivity to dietary proteins, bacterial toxins and tissue antigens.

“Array 14 offers patients an excellent opportunity to identify an autoimmune response early,” said Jean Bellin, president of Cyrex Laboratories. “If an autoimmune issue is in the nascent phase of development, the dysfunction may not have reached the blood stream and standard blood tests would read as normal. There has never been such a comprehensive, early stage immune reactivity test like Array 14.” 

Array 14 is the first test to encompass all areas of The Cyrex System™, including:

• markers of barrier integrity
• immune reactions against all three environmental triggers associated with autoimmune reaction (food, chemical and pathogens)
• autoimmune reactivity to self tissue

Array 14’s comprehensive range and ability to identify autoimmune reactivity early makes it an ideal test suited for annual wellness visits, and anyone who suspects a recent change in diet may be impacting their overall health. The complex and comprehensive Array 14 is also an excellent option for pediatricians, patients who have trouble with blood draws, or naturopathic doctors who prefer saliva screens to blood tests.

Patients with chronic inflammatory bowel conditions, a family history of autoimmune disease or who think they may be suffering from immune reactivity and intolerance are advised to inquire with their physician about ordering this innovative Array 14 from Cyrex Laboratories.

The Cyrex clinical consulting team is readily available for a consultation to discuss the results of patient testing upon request from a patient’s healthcare provider.

Physicians and other licensed healthcare professionals, as well as patients, can learn more about Array 14 and the other unique arrays that comprise The Cyrex System, at www.joincyrex.com.

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.

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!

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!