Monday, 20 January 2014

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.

Friday, 10 January 2014

Airborne for everyone!

I wish I could find a nice way to say "If you're sick, please don't come for drinks" or "If you're sick, please don't hug me" or "If you're sick, please don't invite me into your home". I'd even be happy to have a nice way of asking if someone who sounds snuffly has a cold or if it's just allergies.

Most of the general public don't realize that as a side effect of MS, their sniffles could trigger my next relapse. Even if I don't get  relapse from a cold, I'm nearly guaranteed a pseudoexacerbation (kind of like a temporary relapse).

Get your flu shots, people. It protects you and it also helps protect people like me!

Thursday, 9 January 2014

I don't bake anymore

On an MS forum, I recently came across a "wild diagnosis stories" thread about peoples' reactions to being diagnosed. Not the lengthy wait times or misdiagnosed problems people faced, but what they did in response to the diagnosis. Some dyed their hair a bold colour, others got piercings or tattoos, and some quit jobs and traveled around the world. It got me thinking and I guess I'm boringly pragmatic - I got myself in better shape.

I tend to put my faith in science (less so in the politics of pharmaceuticals), but knew that starting a disease-modifying drug program could only do so much. I'd have to take responsibility for my health more than I had been doing and start paying attention to maximizing function if I wanted to do everything I could to hold onto it longterm. 

When weighed for my first MRI, I was shocked to know my weight had hit 200 lbs. I had completely lost sight of my own body. In the past, I'd hit the gym on a nearly daily basis. When I moved and that was no longer an option, I started running around my janky neighbourhod in Ontario to the dulcet sounds of Mary J Blige and old country tunes. I did ashtanga along with a pastel-painted TV show and later on my own, managing to get my inflexible self mastering some damn intricate poses. My dumbbells and I had a love-in every other day. But, when I moved from Ontario to the maritimes, my life became still. My semi-sedentary nature was entrenched in a sedentary lifestyle. Work had cheap junk food in the cafeteria. I didn't have anyone to work out with. Excuses to mask laziness. [I tried to think of a nicer word for laziness, but the shoe fit] I look at photos of me from the early 2000s and wonder who that girl is and how she got so full of face. 

Just before my diagnosis, I had a little epiphany and realized that my life was too sedentary for my liking so I started walking regularly. I bought and started using an elliptical machine. Then, I was stricken with MS [sometimes I like to use the phrasing other people use to describe me...isn't it hilarious?] my feet went numb, and my legs and entire lower body quickly followed suit, and I didn't think twice about siting on the couch to wait for bad news. Did you know that I stress bake? For real. If I'm stressed, the house smells like cookies or stout cake.* Inactivity + stress baking. Oh yeah,  great combo.

When the news of having MS arrived, I was having panic attacks on the regular. The first time I tried to go for a walk, I ended up going solo. I made it halfway around my 2km block and panicked. Shortness of breath, dizziness, heart banging out Bartok - I thought I was going to black out on some stranger's perfectly manicured lawn in suburbia. Impaled by a Weed Man sign. Instead, I took a shortcut and talked myself through getting home. "You're fine. You're not dying any faster than anyone else. You've walked this countless times. If all else fails, you can whisper a cry for help and people will call the police for by-law violation". I joke with myself when worried. It helps.

I made it home, flustered and teary-eyed, but in one piece. So, then I went out again. I bought a cane. It was for mental support as much as physical support. At that point I couldn't feel the bottoms of my feet (or the tops, for that matter) and that sensation of being off balance was affecting my willingness to go places. I had had a panic attack in the mall with a friend a few days earlier and had hardly been outside the door since. I knew the numbness was a big part of the panic and I didn't want a cane, but I wanted panic even less.

I eventually tried that walk again and I was fine. I carried the cane, but didn't use it. I definitely needed the physical support for a while, but when I got used to the sensation [or lack thereof], showing myself I could go without it was important to me. Then I went for another walk. Then another. Pretty soon I was walking around 30 km a week and feeling great. I stopped stress baking. I bought a weight scale (despite a love hate relationship with the concept). I got back into a little weight lifting and some yoga. I decided to become a pescatarian. I later realized it'd be just as easy for me to become a vegetarian, so I dropped seafood too. 

In the years since diagnosis, I've made better choices. I made the difficult choice to leave a relationship that was easy and kind because it felt like I was alive but not living. I picked up new hobbies...ones that took me outdoors! I have half marathon medals now! I've worn out too many pairs of sneakers to count. I dropped negative people from my life as much as possible. Life with MS has changed me in numerous ways, and yeah, it's a huge, scary monster some days, but not all days.  I didn't do anything wild or unconventional. No blue hair. No new piercings. But I did react and adapt. Those intricate yoga poses? Not even close to doing them now, but eff that, I have snowshoeing to do. 

*Poor Nance. I'm happy so she doesn't get fresh cookies.

Thursday, 2 January 2014

2014? Already?

Happy New Year!

2013 was a great year for me, despite a lot of down time with the dog. Love her to bits, though, and fingers crossed for good health and no unexpected major expenses this year. 

Speaking of yellow dog, she has been LOVING this early winter weather and pretty much wanders around in a face slide or making doggy snow angels. Goofball. It's been a bit tricky for us to take her on all of our outings lately since the cold has been so...cold. With a windchill in the -30s, her little paws can't stand prolonged contact with the ground. I've been using invisible boots again (the salve you slather on to protect against salt and cold) but it just can't compete with the -30 temps. 

Anyhow, the upside of all of the ice and snow is I'm back on snowshoes again! Whooo! We've been out a few times and I could not wipe the grin from my face on the first outing. Sunshine, snow, Nance's smirk, and a racing dog. It was so incredibly peaceful. I won't pretend my cardio's where it needs to be, but am pretty confident we'll be on the snowshoes enough during the winter that I'll stop sucking wind at the top of hills. 

On the health side of things, I'm finding it hard to keep the sensation in my feet when showshoeing. I'm careful not to overtighten the toe strap of the shoes. I wear a loose-ish sock and don't tie my boots tightly either, so I'm not sure what else to try. Those hand warmers burn my skin if left in one spot too long, so I don't think I ca use those in my footwear. I've tried double socks and that's a no go too. Stupid comorbities - I look forward to cool weather all summer long only to lose all sensation in my toes and fingers from Raynauds. I swear I keep SmartWool in the black all year 'round! 

Sidebar: It is incredibly interesting to me that I have 3 cousins with MS (all female), at least 2 with Raynauds, and no one on one side of my family ever has warm feet. Won't someone please sit next to me and tell me the circulatory system has nothing to do with MS again...

So, I thought I'd do a little taking stock from 2013. Things I'm particularly grateful for:

1. My health and that of those around me. I have MS. It's no more a death sentence than being born is. It's not something I'd choose, but I have it and it's not going anywhere. So far it's not impacting me to any severe degree. I make better choices based on it, and that part was hard to figure out, but it's getting easier. 
2. The funniest, most charming pets in the world. I know it sounds silly to many, but I spend all day, every day with these two critters and would be at a loss without their snuggles. [Note: If they weren't so cute, their wrestling sessions would annoy me to an early grave}
3. Love. I am loved. I love. That helps me to laugh often, smile more any one person deserves to, and offers me the freedom to be the person I am and expand my comfort zone.
4. The basics - having a roof over my head and food to eat. It's easy to forget how fortunate I really am just to have those. A recent ice storm left many around us without power, no running water, no way to shower, and no viable means to cook. It's unfathomable to me that so many in the world face that on a daily basis.

I lean towards being an appreciative person (or, I sure think and hope I do), so the list would be endless if I kept going, but that's the short version.

I'm totally humbled by Santa's visit this year. Myself, I'm trying to move towards giving experiences more than material goods since it's hard to find "stuff" that those around me need or might want. I'm not sure I'm any better at finding experiences to give! Y'all need to drop more hints. :)

I'm overjoyed by this funky little ukulele Santa left with my name on it. I've been  strumming along to a lot of my faves (and transposing others so I can simplify the chords to match my novice skills). Poor Nance, someone should have given her earplugs.

I am totally excited to see what 2013 brings. I hope it brings nothing but the best for you.