Monday, 28 April 2014


MS awareness month is right around the corner again and in light of that, I thought I'd point to some of the latest research that's bubbling around MS circles.

A foodbourne toxin may trigger MS 

Data presented at a meeting of the American Society for Microbiology adds to growing evidence that suggests a toxin produced by the bacterium Clostridium perfringens [seriously, say that 3 times, I had to look it up twice just to spell it] —  commonly found on raw meat and poultry — appears to attack the same cells that are targeted in MS. It's an interesting link that is inspiring further research. The trigger is still unknown and the theories include everything from environmental metal (from dentistry metals to mercury in fish) to high salt diets or Epstein-Barr virus.

Vitamin D can slow the progression of MS

As mentioned here, researchers at Harvard found that having high vitamin D serum levels at early stages of MS tended to reduce disease activity and progression. 

Stem cell research  is sowing seeds for hope

The idea of blasting my current immune system before introducing stem cells isn't all that appealing to me (yet?) but it's one of the few treatments shown to help those with more aggressive forms of MS than I have. Nerventra, coming from Teva, is also showing some promise.

…and back on the farm, my folks stayed for a lovely 10 days and are now visiting with my aunt before heading home. It's amazing how much of a challenge it is to stick to my regular rest/exercise/nutrition routines when we have company, but I did okay. Maybe a few more hops than usual. I can usually manage to control any food temptation but it's hard to resist the siren song of a cold beer. 

As I mentioned above, May is MS awareness month, and I've started a small campaign for MS Walk pledges. I'm at my initial goal already, which is amazing and reinforces the support I already feel from family and friends. I am fortunate enough to be able to do this walk every year and may try to drag some friends along again this time. I realize some are hesitant to donate to larger organizations and I know a lot of funding goes astray to pay employees and fund marketing, but in the end, the MS Society does good work and is there when we need it. Thank you to those who have donated so far or have dropped me a personal note of support. Here's hoping the universe is listening and all that karma comes back your way.

Wednesday, 23 April 2014

and so it goes

Lemtrada is a new trade name - the same drug, Alemtuzumab, is sold as Campath for treatment of lymphomas and lymphocytic leukemia. Campath was pulled from markets in the US and Europe in 2012 to prepare for the higher-priced relaunch as Lemtrada aimed at MS. We're looking at something around $95,000 total for eight treatments over the course of two years. No treatment required after that. Nice price point. 


Haven't done much research on this one yet, but Lemtrada is making the news since its approval. New infusion treatment for those with relapsing-remitting MS (like moi).

Tuesday, 15 April 2014

the science of food and supplements - whoo!

Soooo, coming up to a month off of Avonex and all is well so far. I'm still planning on going through the province, but that takes time and some paperwork that I don't have yet. 

In light of not being on a disease-modifying therapy at the moment (thanks to Blue Cross) and relying on diet, exercise, and rest, I want to talk a little about supplements and specific dietary choices I make to support them. I mention a few in this post from last year, but thought I'd elaborate since "what do you supplement?" is a big question in MS circles. So, likely a boring post for everyone else. Sorry 'bout that!

Let me start by saying there are, give or take, 96,560.6 kilometres of blood vessels in the average adult human body. The endothelium is the gatekeeper - the protector of those thousands of kilometres of blood vessels, and it is highly active in regulating the body's inflammatory processes. Endothelial dysfunction has been linked to a wide variety of diseases. MS is one of those diseases. So, I primarily supplement to reduce inflammation and protect my endothelium. 

I've mentioned before that I'm a vegetarian. I'm lacto/ovo which means I consume some dairy products (primarily cheeses that don't use animal rennet) and eggs. Aside from the fabulous dishes we consume at home, these are choices I make to support regular meals:

B12 supplement
Why? I don't eat red meat, which is the highest source of B12, and this vitamin plays a key role in the normal functioning of the nervous system. Specifically important to someone with MS, a disease that attacks the nervous system. It's found in Swiss cheese, eggs, and some fortified soy products too.

Vitamin D supplements 
Why not just tan? Take a look at this post and you'll get an inkling of the importance of vitamin D for someone with MS. There is a lot of research into the link between vitamin D and MS and it all points to increased intake being a positive thing. I take 5000 IU a day. I also spend a lot of time outdoors, but living in Atlantic Canada means we spend 5 months a year without strong levels of the UVB needed to synthesize vitamin D from sunlight. Vitamin D also helps absorb calcium. Which leads me to...

No brainer. Aside from the well-known roles calcium plays in tooth and bone health, it also plays a significant role in muscle contraction. Spasms can be a painful symptom of MS for many and I'd like to stave that off for as long as possible. Spasticity in MS comes from an imbalance in the electrical signals coming from the brain and spinal cord, often caused by myelin damage. While I can't predict which areas of my brain and spinal cord will demyelinate, I can prepare my body to fight it as much as possible. So, I take a small calcium supplement - beans, leafy greens, and tofu take care of the rest.

Supporting food
Seeds/nuts and leafy greens for the magnesium intake. Vitamin D is somewhat inefficient without magnesium to help process it. 

Next up is Turmeric/Bromelain
What the heck are those, you ask (who am I kidding - who even reads this far?)? Both support liver function. Bromelain is a powerful anti-inflammatory found naturally in pineapple and can help fight osteoarthritis. There are strong links between MS and osteoarthritis - both being diseases of inflammation and while I don't want to get too deeply into that here, let's just say that I do not want another incurable degenerative disease on my plate. 

The curcumin in turmeric modulates the body's inflammatory response by down-regulating the activity of enzymes involved in inflammation mechanisms. I've stared at that sentence trying to simplify it further, but no can do.
More info here.

Milk thistle
Whut? Milk thistle is a spiky little flowering thistle whose active ingredient, silymarin, modulates oxidative stress and prevents cell death in the liver. While the research into silymarin has mixed results, many studies show liver protectant qualities.
More info here.

Green tea
Yep, plain old green tea. The active ingredient, EGCG, is an Nrf2 activator. Basically, Nrf2 is a powerful protein that is latent within our cells and it can't move or  get to work until released by an Nrf2 activator like EGCG. When it's released it can migrate and bond to DNA located at the regulation mechanism for the antioxidant system that is available in all cells. This process allows for production of important antioxidants, lowering overall oxidative stress. I drink green tea all day long. If you didn't follow that, I'm sorry. Drink green tea. It's tasty.
More info here.

Dietary choices
Fruits and veg. We aim to get 7 servings of fruit or vegetables a day. It's not hard when you consider that 1/2 cup of tomato sauce or salsa is a serving. Half a cup of any fruit. Half an avocado. This is great reading on the importance of this step. Yay for lowering risk of death! Not risk of abc disease or disorder xyz, but actual death. Full stop. Seriously, how can anyone argue against these kinds of findings?

So that's about it. That's how I protect my protector. It's not a big deal to stay on top of, and the research is out there for each and every supplement, so...why not, right?

In other news, mom and Lindy arrive in two days. I'm superduper excited to see them - I think this city will feel like a real vacation for them - there's not a lick of snow left on my property now. They're still buried in Newfoundland. 

PS. Doggins is doin' great. Small gait issue with the rear right, but that may always exist after the cruciate and then the meniscus damage. She's happy as a clam, though. As are we all.

PPS. Signed up for the MS WALK in Saint John this year. Looking forward to it! 

The important thing is not to stop questioning. Curiosity has its own reason for existing.
- Albert Einstein

Friday, 4 April 2014

hugs, drugs, and other things

tl;dr All is mostly well. I'm off of Avonex for a bit. And I'm okay with that.

Since we last tuned in, dogface had knee surgery #3. It's been a tough 11 months for her and for us. Mostly just the emotional toll it takes on us to see her hurting and then to rehab her back only to have another injury. I won't say it was a financial picnic either, but in the end, as my dear friend Brian says, "you can't tickle a Nissan Rogue under the chin". We're all good now and she's cleared for any and all exercise. Her knees are stronger than they ever were so it's just a matter of working her back into shape gradually. We made sure to keep her as lean as we could during recovery so she's at a nice, healthy weight. It's hard to ever think of an English lab as "lean" but she has a nice tuck and trim, so she's at conformation standards.. We're up to around an hour and a half of leash walking a day...barring sidewalks with lucky loonie ice rink conditions. We're both benefiting from the walks!

I haven't updated in a while and tend to update with the good and cheery, so I thought I'd post right now as I've been symptomatic and unhappy about it. It's nothing that interferes with life, but I have what is often given the cutesy name, the MS hug. The reality is not a soft, warm embrace. At times it feels like I'm having what I imagine the beginnings of a heart attack heel like, except nowhere near my heart. The left half of my torso and the right side of my back is being gripped by a giant hand, a rubber band, a girdle, a boa constrictor, a get the idea. Most of the time, I feel like I can't catch a full breath. The hug is from lesion or other abnormal activity in my central nervous system causing a spasm of the intercostal muscles (those thingies that hold the ribs together). The thing with MS is those muscles may or may not be in spasm but my central nervous system damage makes the rest of my body think they are. Bummer. 

It's not life threatening. It doesn't affect my functioning and it's not of the vision, bowel/bladder, mobility, cognitive factors that constitute a neuro appointment. It's still a bitch, though, and it takes a toll on my mood. It also makes extended walking uncomfortable, as if I'm wearing a shirt that's far too small for me. Sometimes sitting still feels pretty icky. Through trial and error, I've found that wearing a sport tank helps - the grip to my body makes the other gripping sensation less noticeable. Otherwise, I'm well. I thought it might be a pseudoexacerbation since I feel so well aside from this blasted chest weirdness, but I'm not sure since it has been going on for a few weeks. 

So far my plan of attack includes rest, moving my ass around the nearest 5km or so on a regular basis - as gross as it feels, staying cool (winter in NB, so this is pretty easy), keeping stress at bay, and putting it out of my head in a "stop worrying" way rather than one of denial. Sometimes a plan of attack doesn't make a damn difference. 

[Note: I wrote the previous paragraphs 3 weeks ago and the hug is more off than on now. I'll take it!]

As always, Nance has been incredibly supportive - letting me whine, but knowing that I don't want to dwell on it. I'm ever a silver lining type of person and never want to lose that. Exercise helps. Meditation helps. Writing helps. 

I had an appointment with my family doc since writing that bit about the hug. I'm not interested in steroid therapy for my symptoms because of the risks of osteoporosis (and I consume little dairy), so there's nothing she can do to help. Still good to have on a chart for reference, though.

It's that time of year again when I reapply for special authorization for Blue Cross to approve of my DMD, Avonex. I sent off the form to my neuro's office early May and found out this week that I've been denied. Bastids. 

In the time it took to find out, I ran out of the drug and I didn't pay out of pocket this time. I've been researching and tinkering with the idea of going off of Avonex for quite some time, and this opportunity arose organically, so I took it. I'm considering applying to the province for coverage. Historically, they turn me down too. It's a bit of a nuisance to apply to the gov since I'm self employed so they need my tax information for the last three years plus a record of liquid assets and a handful of other info. I truly have no idea how people with less access to resources manage the paperwork.

Okay, that's enough. I don't have it in me to write a total bummer post, so the positives:

I am off of Avonex. Since that happened I'm far less irritable on a day-to-day basis. Coincidence? Likely. Interesting, though.

I am getting back into meditation and loving the mindfulness it brings. 

Mom's coming! My mom and step-dad are visiting over Easter and it'll be the first time since I moved here in 09. They've never been in my house, so it's a warm idea that they will be able to picture my home when I talk to them from now on. They're staying with my brother but he's only a hop, skip, and 4 jumps over the bridge (totally different from jumps off the bridge). I'm looking forward to seeing them. We (Nance and I) don't celebrate Easter but we did as a family when I was young, so I imagine we'll at least do a holiday meal. Perhaps a certain bunny may pay a visit.

Tangent: My favourite Easter memory is getting up early one Easter morning, hugging a pink bunny that was waiting on the couch, and turning on the TV to watch Godzilla in my jammies until everyone else woke up.

In other news, the plans for a summer family reunion seem to be shaping up. 44 yeas so far, I think. Not sure how many nays. I'm banking on being home before the reunion to do some of the east coast for camping/hiking. Doggins should be ready for that kind of activity by then. I certainly will be! 

That's all for now. If you see Mother Nature, send her my regards and tell her she's been overgenerous with the white blanketing here in NB. Today's +6 was much appreciated. She's welcome to cancel tomorrow's snow.