danced in their heads

After weeks of boozy, sugar-coated overindulgence, the holidays are swiftly coming to a close…

...unlike the zipper on my jeans.

Irish cream in morning coffee, social drinks nearly every day, snacky foods we don't eat year round - I'm all for Christmas cheer, but my clothes are starting to request danger pay. Back to better consumption habits, immediatement! If anyone craves tiny cupcake-shaped chocolates, please help yourself to our cupboards. Leftmost, top shelf.

Fortunately, we have isolation to help loosen our waistbands over the next few months. [Covering my assets, I say "we" as my wife insists she is in need of a renewed eating plan as well. I'm not, in any way, suggesting she needs it.] When you live in an area without neighbourhood corner stores or restaurants, meal planning becomes more important and somehow easier to stick to. 

Not that we won't see anyone through the winter but we have a very small handful of friends within 300km of us. We'll surely get together with the friends we have here, but they have committed to better eating through the winter too. So, we are set up for success. Prepare for my utterly foul mood during sugar detox. I'm already finding myself scrambling to find something sweet in the morning and cursing Christmas cheer for letting sugarplum fairies lead the charge. Being removed from convenience can sometimes be a good thing.

Something happens to me in semi-seclusion. Without the distractions of TV and a social life, I tend to write and draw more. And I tend to write better. Not on this blog, mind you, but my pen or pencil stabs away at paper more. When you don't physically write much, it feels strange not to tap out your thoughts with fingertips. How odd.

It has always been this way. In my younger years I always wrote most when at the cabin. Being alone with my thoughts makes them louder. That's mostly a good thing.

My thoughts about MS have always been fairly quiet. Not that I don't have frustration or fears about having MS, but after my first year as a person with MS, my inner dialogue quieted to a murmur, for the most part. I have never been able to write about in in a concretely creative way. I have a half-assed poem about MRI claustrophobia but that's it. I have tried to write about having a (mostly) invisible disease, but it bores me. It's not interesting enough for me to put my energy into. I have wondered if denial keeps me from delving into that side of my life in a creative fashion, but I don't think so. Which sounds a lot like denial, right? 

It seems fertile ground for many authors, some with MS. Silent struggle, bravery [Raoul], hope - it's all so self absorbed...unlike keeping a blog, of course. But I write about it here and that seems enough. I stay on top of the research (MS sufferers* benefit from high levels of vitamin D). I try to remain active and eat well, the last few weeks notwithstanding. But I can't romanticise a disease that has taken things from me. It doesn't anger me enough to work up artistic acrimony. It's upsetting and sometimes to a degree that few around me would guess, but I've never been one to work out my fears out loud or in  any way other than straightforward. While I may pitch an internal hissy fit at new or worsening symptoms, I am accepting of MS and don't want to give it more room in my life than it deserves.  

It is a gorgeous, cold day in New Denmark. At -28, the wind chill is a degree colder than yesterday's face blazing snowshoe. I have learned that one needs a balaclava to snowshoe across breezy, open potato fields once January hits. The Ireland walking tour is half a year away but has become motivation to get outside even in bitey weather. Even when sloth suggests I really, really don't want to. At all.

We three [catface makes four, but he's anti-snow] love being outdoors together, so this winter is going to add a lot of miles to the snowshoes. Nance has found a new spin class. We have the treadmill in the den. Now if only someone could hide the remaining snacks.

xo

*authors and researchers need to stop using this language. We're people with MS before we're sufferers or patients. Get with the fucking times.

visits, sunshine, and a few extra pounds

Spring has officially launched in tiny town! There are flowers of some as of yet unidentifiable variety pushing towards the sky in the flower box. Birds aplenty. And the smell of manure here in farm country is starting to pervade the morning breeze.

I'll take it.

Sooo, what's new? Mom's visited. I spent Mother's Day with her for the first time in maybe 17 years. Not 100% sure on that guess, but that's when I moved from my home province, so it's my best estimate. It was nice having her here. Fairly relaxed. We managed to fit a lot into her stay while keeping the day-to-day pretty slow. We saw a comedy show, had a dress fitting, attended an awareness walk, visited the wedding venue, been to a handful of farmers markets, frequented a potato chip factory, visited the falls, watched Nance run a half marathon, went shoe shopping, had a few nice dinners out, had a few nice dinners in, walked the dog a bunch, frequented the local ice cream parlour a handful of times, wandered around Fredericton + Saint John + Grand Falls + Edmundston, talked wedding talk, went through our wedding decorations, and sat in the sun! Yay, sun!

We've had a smattering of wedding replies so far. We've invited as much of the away fam as we could (no one told me editing a guest list would be a Herculean task!) and it's tough to estimate how many will come. I'm eager to send out invitations to the mainland folks too since most of our closest friends fit into that category. We're not spending a lot of time fretting about it, but the details are mostly falling into place bit-by-bit. No hints of bridezillas yet! 

Let's talk about the MS hoohaw a moment here since it's May and I'm often putting out a call for donations around now. This year, however, I'm living in a place where there is no MS walk. The closest is 2 hours away. I'll miss those few hours of community - I can't begin to express how walking with other people in the red bib feels - but I'm okay to opt out a year. I know my own family and friends donate to charities of their choice no matter what, and I'm thankful for the awareness they spread on my behalf and the behalf of others with MS. 

The cause of MS is still unknown and there are four major theories:

• Infectious - childhood viruses could trigger an onset of MS or the irregular immune response we develop. Epstein-Barr is the front runner in that race. So far no virus has been directly linked to MS.

• Immunologic - an irregular immune system response is pretty much a de facto part of understanding MS. Some believe that's the end of the story - we were born with wonky immune systems that deteriorate with time and start attacking healthy tissue. Others believe that the immune response is a result of some other issue that haywires our immune systems. 

• Environmental - there seem to be MS clusters, or areas where MS has much higher incidence and prevalence than other ares. There's also the vitamin D mystery. Most MS cases occur fa away from the equator, so it's thought that vitamin D may be a contributing factor. Supplementation does have significant numbers supporting that theory. Diet is another environmental factor that's thought to play a role. Obesity and salt in the diet raise the risk of MS. Is there anything that isn't a risk factor?

• And lastly, genetics - according to the literature, if you have relatives with MS, you have a higher chance of developing it. I'm not sure how anyone could fully tease any one of these theories from the other, but there is no doubt that there is some sort of issue with hand-me-down genes. I have 2 relatives with MS on one side of my family, and 1 on the other. I don't personally know of relatives in older generations who had MS, so I can't say for sure where my own genetic predisposition comes from, but it is bound to be from both sides. There is a very tiny increase in risk if you have a blood parent with MS.

On that note, I feel well. I'm 14 months off of a disease-modifying therapy. I have a smidge more weight on than usual (bitterly cold winters in a small town meant more vino than necessary), but it's dropping. Coming out of hibernation and into a warmer season is so amazing. I can't wait for fresh produce to start showing up at the local farmers' market! We're starting a "cleanse" soon of smoothies and soups to get back in the swing of things. Having company means we end up bringing things into the house we normally wouldn't (not under duress - see list of things we did with mom for proof) and if I look at bread, I gain 4 lbs.

On a non-MS note, I've been struggling with this stupid reflux. I went through a dietary process 10 years ago to try to figure out my triggers, but it turned out that it's triggered by food. Period. So, hopefully losing a pound or seven will get it back under control. I've been on proton pump inhibitors for ages and ages and just switched to a new one in hopes that it'll help. This is also a bit of a genetic thing - muscular problems with the stomach or esophagus. It scares the crap outta me when I have swallowing troubles - I always wonder if it's MS (it's not) or reflux (it is). Some of the potential longterm symptoms of MS are troubling to me and dysphagia is a big one. Who knew heartburn could cause so much paranoia!?

We have company coming this weekend, so I'm off to hang sheets on the line and freshen the guest bedroom! Peace out.

xo

highlights

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.
xo

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...

Calcium
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.
xo

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

Big numbers

This is a research post, but bear with me, it is really interesting and promising. 

The Harvard School of Public Health has put out a new study that followed people with MS for 5 years. Stay with me, it'll get interesting, I swear. It found that people with increases of a certain amount of average serum vitamin D levels (50 nmol/L, to be exact) within the first 12 months after diagnosis showed the following benefits:

• ·      57% lower risk of relapse
• ·      57% lower risk of new active brain lesions
• ·      25% lower yearly increase in T2 lesion volume, and
• ·      0.41% lower yearly loss in brain volume from months 12 to 60

Those numbers are amazing. 57% lower risk of relapse is significantly higher than even the disease-modifying drugs are noted at.

The study had 465 participants and started off on a completely different foot – measuring beta interferon efficacy. But, with a great bit of luck (or planning, I’m unsure which) all participants had at least one measurement of their serum vitamin D levels during the first year of study. The team then followed participants through a combination of MRI scans and neurologic examinations for 5 years in total.

What’s really key here is that the researchers were not supplementing vitamin D, they were only measuring it as part of the pool of blood samples they were collecting to track the efficacy of the drug…nothing at all to do with the vitamin D side of things.

So, why is this relevant? Because it gives yet more evidence that vitamin D levels are somehow important in disease progression. The higher the serum vitamin D blood levels are, the less disease progression and brain atrophy and fewer active lesions and relapses. Low serum vitamin D levels early in the disease course are a risk factor for long-term MS activity and progression in pretty significant terms.

I supplement vitamin D and have for years now with my neurologist’s blessing. I live in a high latitude, and when it’s not summer, it’s winter. It's hard to get appropriate exposure to UV through those wintery months even if I'm outside every day. I don't high dose, even though toxicity is rare. I take just enough to keep my levels up.

Bonus: the supplementation also keeps my mood up. Vitamin D deficiency is also linked to depression and mood disorders.

Will link when I can find the actual study and not the millions variations of the same media release.

CCSVI treatment still "doesn't work"

I came across a link purporting that there have been 30,000 unnecessary surgeries and millions and millions of diverted funding only to find CCSVI treatment doesn't work. Again.

While I agree that much of the media conflates the concept of this as causation, come on. Studies that use 19 people? Studies that don't use Doppler? If you're trying to disprove the entire idea that blood flow has something to do with MS, at least do it with studies using, oh, I don't know, more than 20 people!

In my admittedly ridiculously non-medical opinion, the results from all the studies since 2009 put CCSVI in the same light as many other factors associated with MS - geography, potential genetic markers, vitamin D levels, exposure to metals, exposure to viruses. Mind you, we see varying degrees of the same "factors" in healthy controls, but for some reason they're higher in pwMS.

Do I flat out believe that CCSVI is the mainspring of MS? No. I'd love to believe we've found a cause, but I personally think it's multifactorial because, well, we are incredibly complex critters! But the research since 2009 has not shown one way or the other that abnormal blood flow does or does not have a hand in disease emergence or progression. To me, that's worth investigating.

This area of research is heavily linked to products like the new, highly touted BG-12 and is the target of the Wahls diet. It's why Biogen compared their BG-12 (now named Tecfidera) results with Protandim in a study - yes the product endorsed by the ever-young Donny Osmond. Protandim won, by the way, but I'm not here to cast doubt on Tecfidera, I truly believe it can have a huge impact in how "we" approach MS treatments. Abnormal venous blood flow is a plausible explanation for poor endothelial health [shown in McQuaid's The effects of blood-brain barrier disruption on glial cell function in multiple sclerosis, 2nd Neuroscience Ireland Conference. 37: 329-331 and even as far back as the 1990 study on the breakdown of the blood brain barrier by Kermode].

Wahls might call it "minding your mitochondria" and many of those leading the CCSVI charge might speculate about blood flow and its effect on endothelial health, but it's all one and the same, isn't it? People with MS have higher levels of oxidative stress. You fight oxidative stress by quenching free radicals. On the Wahls diet you get an abundance of free radicals to battle oxidative stress. The diet also rules out things that hurt your endothelium by eradicating one's consumption of processed foods. This idea is also why there is ongoing research into treating MS by addressing infections like chlamydia pneumonia - acute bacterial infections become chronic with weakened endothelial health.

By Biogen's own admission, BG-12's mechanism isn't totally clear (nor is the complete mechanism of many MS drugs, take Avonex, for example), but at the very least, it has anti-oxidant properties that block some of the molecules that are known to inhibit mitochondrial function (that in turn exhausts cell energy and can eventually lead to nerve damage).

CCSVI research is no different. No, wait, it is. It's totally different in that media pushed it too far in the beginning by using ridiculous claims. Cure! Causation! While the effects of CCSVI on endothelial function are completely conjectural, enough researchers have confidence that there may be a link between abnormal blood flow caused by CCSVI and endothelial stress.

Does that mean the outrageous claims of cure and causation are justified? No. They're shameful. But it does suggest that blood flow is a very valid area of research in MS. I'd rather my funding go to this type of research than merely pushing all of my coins into the purses of pharmaceutical companies.

(no idea what's up with this formatting)

What the heck do I eat?

Maybe I'll follow the Swank Diet, or I've heard the Wahls Diet is nearly a cure, but what about paleo and primal? Should I check out the "Best Bet" diet (shout out to the fabulous Ashton Embry)? Do I go low fat? Low carb? No dairy? Low sodium? Gluten-free? Green tea? What  the heck is an omega 3? YOU HAVE TO BE FRICKEN' KIDDING ME!

Okay, healthy eating is important for everyone. Not exactly news. But when you have a chronic illness, it seems to take a little more of centre stage.

So where do you start? Well, it helps (?) to know that doctors don't even agree on what's good for people with MS. My neurologist recommended I up my vitamin D intake a few years back, so I supplement 3500 IU a day. Some articles suggest supplementing with vitamin D can throw your system out of whack. [Note: vitamin D toxicity is extreeeemely rare]

I did so much reading when I was first diagnosed that I made a list of anti-inflammatory snacks and supplements. Seriously. Cherries, ginger, omega-3 fatty acids like fish oil or flax seed (or more accessible than flax, chia), fruits and veg (for delightful plant nutrients called phytochemicals), except nightshades like tomatoes and potatoes (I'm from Newfoundland, you just try to tell me not to eat a potato). I even printed a little list to carry with me to the grocery store. Now, don't get me wrong, inflammation is the beast I try to tame, but no one needs to obsess over a list of anti-inflammatories. 

To me, it's simple. 

If you don't eat vegetables, eat vegetables. If you only eat potatoes, try something green or orange on the side. If you don't like vegetables blend them into smoothies, pasta sauces, meat patties…just eat them.

If you eat a lot of processed food, don't.

If you drink a lot, don't.

If you eat a lot of sugar, you guessed it…don't.

If you eat meat, try to balance with a lot of vegetables, and make it grass fed. 

Some of y'all thought I was gonna go all vegetarian on ya' there, didn't you? :)

Carbs aren't going to kill you, just make most of them complex carbs.

Is there anything harmful about the Swank diet? No. Will getting a massive amount of antioxidants as per the Wahls diet do you good? Of course it will. People with MS have higher levels of oxidative stress than the norm, so the more antioxidants we consume (found in those colourful stores of veggies and fruits), the less damage done to our bodies by free radicals. That said, if you don't have MS, the same is true. Veggies are good for you. Your mom wasn't lying. 

Does paleo or primal work? Possibly. Does low carb have benefit? Of course. As does eating low sodium. 

This is what I do:

• I don't eat meat. That's a personal choice and has little to do with MS. 
• I try to never say no to vegetables of any sort (I'm working on onions and green pepper, but I don't think I can get there with onion and can only eat it super diced or blended).
• I track my calories. Again, personal choice and not for everyone, but it helps me manage meals and put healthy portions into perspective. If I stop tracking, my metabolism goes haywire. When I started tracking a few years ago, I was shocked to find that I tend to not eat enough calories rather than too many.
• I find balance. Do I eat processed crap sometimes? Yes! Do I eat and enjoy salads and healthy, well-balanced meals more often than I eat that stuff? Absolutely.
• I try to limit my glucose simple sugar intake because it is wicked hard on endothelial health and bumps up oxidative stress. This one's the kicker for me because my go to "feel good" food growing up was candy and pop. Soda's not a problem for me to ignore. Something in me whimpers as I go by the candy aisle.
• I drink beer and wine (funny on the heels of that last one, maybe). Maybe not as much as I once did, but that seems to be more of an age decision than an MS one. 
• If I have "bad" food it doesn't plague me. I'm not tormented by visions of Doritos.

In supplements, I take milk thistle for my liver health - it has liver-protecting silymarin. I drink a boatload of green tea (ECGC…plus deliciousness, why not?). I take a vegetarian multivitamin to make sure I get sufficient B12 and magnesium. I still take the vitamin D supplements and I try to let myself get a little sun whenever it appears. I take flax seed oil for the anti-inflammatory properties and would love to find relatively inexpensive chia oil. 

None of this is all that whacky or out there...unless you love steak and just can't fathom being vegetarian. Actually, if you try the Wahls diet, you'll be pleased to find that Terry Wahls recommends meat intake and thinks vegetarianism is a no-no. 

For those with MS, do some research. Food has impact. We are so very careful over what drug regimens we choose, it's a little unthinkable not to try to control as much of MS as we can and give our food some thought too.