Monday, 23 September 2013

Winter is coming...

We've been winterizing the house and I am really hoping all this work will make a difference in the electric bills this winter.  The big bonus of winterizing is we also do a "fall cleanup" at the same time. Ahhhh, decluttering!

So far we've gutted the porch closet, refilled it with summer love, and shrinkwrapped it. It's breezy out in the porch, so closing off the closet and window are necessary evils. Ultimately, I'd like to get someone who knows house-y things to tell us wt-heck we can do out there longterm to help with efficiency. I can see underneath there from the front stoop, so I'm guessing there's be a relatively easy way to insulate. Anyone? No idea. Must consult the fathers for suggestions.

Happy first day of autumn, friends. We've already cleared the lawn of leaves once, and the grass is again buried beneath them, so the seasons of blankets and wool socks approacheth! Whooo! Many dread our long winters, but I generally experience fewer symptoms through the cold months, so I welcome the white weather. Yeah, it's a lot of early morning and late night snowblowing and shovelling but I'll take it. 

But first, the season of colour! I am so excited to be heading to Newfoundland for a little trip during fall! I have lived in four provinces and one state and there's nothing that compares to the oranges, yellows, and reds that cover the west coast of Newfoundland in autumn. Love. 

It's gearing up to be an unusual trip for me because the dog, while recovering fantastically, is still not fully healed. That means no stairs, no slippery surface floors (hard to avoid, even here in our own house), and zero crate time. The specialist told us from the start that if we absolutely HAVE to crate her, to limit it as much as humanly possible. So, our babe has been uncrated since the first surgery. I like to keep her used to the idea since there will undoubtedly be times when we'll have to rely on the crate, but she's enjoying her freedom and there seem to be fewer occasions when a crate is warranted. Yellow tornado is growing up.

I always feel like I should include a note on how I'm doing for the fam who don't ask. On the symptom front, no real change. Still symptomatic. It's no better but no worse. 

Now, if you'll excuse me, I have sweaters to sort.

Wednesday, 18 September 2013

hidden monsters

As hinted at in my previous post, my stranger feet are back. Thankfully, there's no complex walking, just the paraesthesia - numbness from both knees down. Blah. I've been brooding on this since it started up again - how will I respond if and when the sensation disappears forever? I always assume it will return again - that I will regain the sensation I've lost. I am an eternal optimist but I know that particular expectation is a naive sentiment to many with MS. I realize that many cases of relapsing remitting MS change to progressive/secondary progressive MS at some point, but I'm not sure I'm mentally prepared to lose sensation to this disease, one limb at a time. Apt, but creepy, one of the early names for MS was "creeping paralysis" - geez, way to be uplifting. It's a strange thing to see a splinter in my foot and not be able to feel it. I know millions deal with much worse, but I'm in a bit of emotional tumult over it these days. 

I'm assuming this is a relapse and not a pseudoexacerbation - a big word for the best case scenario. Last night, no matter what position I tried to sleep in, it felt like a hidden monster was gnawing on the full length of my right arm. Constant biting pressure. Not joint pain, not necessarily muscular - intense arm pain from below the shoulder to my wrist. I extended my arm towards my sleeping feet, bent it at the elbow to rest my wrist on my belly, raised it over my head, stuffed it under my pillow, but nothing changed the feeling of being a monster's lunch. I stared at the time projected onto the ceiling for four hours before finally slipping into sleep. Demons don't dine quickly.

This isn't meant to get you down or show you that I'm down. I'm lost in my head about it at times and will freely admit that needing a moment to get my balance because I misjudged my foot placement makes me sad, but it is what it is. It makes getting over the Abbey-proofing baby gates more of a challenge than before, but I can still get around just fine. No need to dust off the cane or grab at the walls or furniture. To look at me, you'd not see a struggle. I hope the foot and leg sensation returns. It's 10 in the morning and last night's excruciating arm pain has completely disappeared, so that makes me optimistic. Ever the fool. (true story: someone who is naive is technically termed a naif) The only way for me to avoid despondency and hopelessness when faced with relapse is to will myself not to define it as misery-inducing. Happiness is very often a choice from within.  

Getting MS was never on my agenda and now I can't seem to get it off the long-term calendar. I have to live with invisible monsters for the rest of my life, so I'm trying to look past the fear that comes with each new symptom and focus on the contentment I have in other parts of my life. Contentment that can, when not clouded by fear and discomfort, eclipse physical disability. Maybe I am ever the fool, and I'm certainly not happy to have multiple sclerosis, but I can be happy in spite of it.

Monday, 9 September 2013

My words are gone to the darts...? Whatever.


It's been a pretty quiet summer with lots of house arrest while the pooch recovered from two knee surgeries. That put me home quite a bit, but I managed to complete the August geocache 31 in 31 challenge - a cache a day every day for a month. I think Nance and I ended the month with over 50 finds, so all in all, a neat experience. Not one I'm eager to repeat since you're forced to work around regular life and some days you find yourself using your 18 spare minutes of the day to stand in the pouring rain, looking for a tiny magnet hidden somewhere on a giant memorial gun, and wondering why the heck you're not at home having a nice glass of wine. More fun than not, though.

We've been caching with renewed interest this summer, and I've brought my total finds to over double what it was at the start of the year. In addition to slogging around town looking for tiny hides, we found a few in PEI and Quebec so it was neat to grab those provincial profile souvenirs.

You'd think that the forced caching would mean I've been more active than usual, but when you have to get a cache a day, you tend to pick sure things - the ones you know won't take hours to find. So, all in all, I've been less active and my body is very aware of it. I've been low level symptomatic for a bit now (random numbness, limbs falling asleep much easier than normal, very heat intolerant, blah+blah), so I'm back on the activity wagon and have been trying to get moving again. It'll be that much easier once we get the go ahead to increase the yellow hound's activity level too. Hopefully we'll get the green light late this week! Fingers crossed. 

This whole "dog destroyed 2 ligaments" summer has had silver linings and the biggest plus has been that Abbey is loving being handled more. With months and months of massage, range of motion exercises, ice and heat compresses, she has learned to loooove being rubbed. It may sound strange for a dog, particularly a goofy lab, but she was never one for physical affection and we had to clicker train her into accepting head touching when she was younger. So, when I'm sitting next to her and she goes belly up and whomps her massive tail as a request for tummy scratches, I have to admit that my heart gets a big squeeze. 

In other life news, work has been good. Busy. Challenging. New perspective. Being symptomatic hasn't had an effect on that side of things, thankfully. I'm not sure how I'll cope if and when that ever happens. I know cog fog (receptive dysphasia - difficulty in comprehending communication) can be a career killer for many with MS, but I have none of that unless I am completely exhausted. I do, however, have a sprinkling of expressive dysphasia from time to time. If you're not familiar with it, it's this odd little quirk (actually brain damage, but let's call it a quirk for the sake of my own comfort) that makes me say words I don't mean. I may try to say "pencil" but "table" comes out. Or I may ask Nance if she's seen my "handle" when I mean "brush". The dog's "tail" is a "wing". (Sidebar: can you imagine if lab retrievers could fly?) It's a really weird feeling, but I can see the humour in the situation most of the time and N will joke about it in a way that works for me. It mostly happens with single or double syllable nouns. It has happened a few times when out with friends and I haven't bothered to explain it yet. It usually gets a laugh and is dismissed. I'm not sure if anyone realizes it's an MS thing or not and I really don't care to make every slip up an education session. If you have noticed my word replacement, that's what's going on. I can honestly say that I mind it a lot more on the phone than in person. For some reason, it's easier to let it go and laugh about it when the listener is in the room. Thankfully, I don't spend a lot of time in phone communication. It doesn't happen when I type, so I'm lucky in the sort of work I do.

Anyhow, work has been good. Life has been quiet, but good. I'm still chugging along on Avonex injections and they seem to be working okay. I'm another year older and am still feeling great, just don't be surprised if my phone rings and I ask you to pass me the remote.

Wednesday, 17 July 2013

I can.

This woman ran a marathon every single day for a YEAR. On the final day, just for funsies, she ran two!

Oh, did I mention she has MS?

Tangentially related, there are many great things about the person I share home with but one of the greatest is that she doesn't let me say no to exercise. If I'm kinda tired or don't really want to, I don't get a look of disapproval or some elaborate attempt to change my mind - she chooses the only approach that works for me - she ignores me. She goes to the closet, puts on her sneakers and stands there until I'm ready to go too. I could be a stubborn ass about it, but I know that "I don't want to" is not a good reason and I'd only be mad at the missed opportunity later in the day.

So, while I'm no Annette Fredskov, be active with me. Come geocaching. Let's go on a hike. Grab a leash and help me walk the dog. If there's snow on the ground, bring your snowshoes. Life's a journey and journeys aren't all about sitting still.

Thursday, 13 June 2013

Mind the gap

"You don't understand! My family doesn't understand. My friends don't get it."

I hear about this all the time in the MS forums I read and moderate. There is a disconnect between those with MS and the people we love and that gap can cause the breakdown of our most prized relationships. Where is the short in the cord? Communication, of course. 

In many cases the people around us have been healthy their whole lives. Colds? Sure. Maybe some itchyashell hayfever, the odd flu, or other aches and pains. Granted, some have faced the fear of having cancer. But all in all, most people don't have experience living in a body that doesn't work as expected. It's pretty specific to MS and autoimmune issues. So, how do we let them in? How do we help them understand the world as we see it? Or, on the far end of things, how do we allow people to see past the big red billboard of disability that has long been associated with MS?
I think the answer is in compassion. Not everyone else's compassion towards my own personal situation - that's a bit obvious, I guess. People traditionally try to show compassion to those who are seen as sick or weak. Otherness. Rather, I'd like to find a quick route to compassion for the people around me who don't get why some days I'm smiling and comfortable and at other times it takes a while for me to warm up. 
If we, as people with MS, want others to be able to understand, we have to take the same steps towards understanding  After all, it's not anyone else's fault they haven't had to work through getting their legs to cooperate and not jerk in the wrong direction like a drunk Disney character on stilts. People can't relate when we don't let them in.
If we can refocus our own feelings of being devastated when others don't understand, and stop indignantly insisting that others should get it through osmosis or black magic, we can communicate more clearly and with purpose. I can tell you from my own experience and the experiences of those around me that when people don't get it, they feel impotent and that cut off can build rifts and isolation on both sides. Taking a few moments to explain why you can't make it to a bbq extends more than information; it offers a very clear connection rather than a mumbled message that leads to confusion.  
Subtlety isn't always helpful and stating what may not be obvious to others takes some of the responsibility off of those around us. Instead of feeling resentful towards others when they don’t face the same physical or cognitive issues, or disgruntled over their lack of understanding, hopefully, I can redirect my anger and conjure some compassion towards them. With a little luck, the magic words needed to let them in will stem from there. 
“…feelings like disappointment, embarrassment, irritation, resentment, anger, jealousy, and fear, instead of being bad news, are actually very clear moments that teach us where it is that we’re holding back. They teach us to perk up and lean in when we feel we’d rather collapse and back away. They’re like messengers that show us, with terrifying clarity, exactly where we’re stuck. This very moment is the perfect teacher, and, lucky for us, it’s with us wherever we are.” 
― Pema Chödrön

Wednesday, 29 May 2013

Happy World MS Day!

What better day to update than today?
With your help, I raised $1340 for the Halifax MS Walk. Thank you all so very much.
The walk was good. It was very well organized with lots of signage and plenty of volunteers. It was a sunny day in Halifax, but the wind (and a few water stops) kept the walkers cooled off nicely. Yellow dog was excited to be out in such a big crowd of people and seeing other dogs. It was her longest trek in months, and all the people + distance + heat = one tired pup that evening.
I have to admit, I was a bit confused at one point at the event. Nance tried to register because of this blurb on the MS Society's site:
On event day, all participants who have not raised funds in advance will be asked for a donation of $20. At this time you will also be asked to sign a participant waiver. 

Upon trying to give her $20 and sign a waiver, she was told by a volunteer that she didn't have to register. If she was walking with someone she sponsored, she didn't have to do anything but walk. Nance had already generously sponsored me, but it seems kind of silly for a fundraiser to be turning away money, doesn't it? It's not like they can keep the general public from walking along for free, so you'd think they'd take whatever funding came to the tables that day. 

No real complaints about the event, though. It was great to have a little posse there with me. I'm happy to report that I have never had to walk alone. I doubt I ever will.

All in all a great day - I got to see family that I don't see nearly often enough, and there was time to show kids that not all big dogs are scary and mean. 

These walks are always a bit emotional for me. People with MS can choose to wear a red participant bib and every time I'm at one of these events, I find myself wandering the venue alone to take a look at the red bibs. One thing I've gained from these events is the knowledge that we MSers are of all walks of life. It's a hidden disease for so many, which makes awareness that much more important. This year, a lot of the red bib wearers were young, fit, and looked vibrant and happy. Some walked with their children. Some walked with their parents. Every one of us had faced that same diagnosis phone call or doctor's visit. None of us were broken by it. 

Monday, 20 May 2013

Goal met!

Thanks so much for supporting me in the MS Walk. I am touched by the generosity of those around me.

Very fortunate.

Friday, 17 May 2013


Next weekend, I am making the trip to Halifax and have decided to do the HRM MS Walk while I'm there. 
I've recruited Nance, yellowfoot, and possibly one of my many relatives in the area to join me for the walk. [Sidebar: I asked her if she wanted to meet up for a beer while I'm in town and then did a switcharoo and asked if she wanted to walk 7 km instead. My bad. I hear cold beverages are refreshing after walks.
In preparation for the event, I shot up my fundraising flare yesterday and am nearly at my goal! I have 9 days to get the remaining $45, so fingers crossed! I have a fantastic support system and they/you definitely come through for me for this cause. I get all teary and overwhelmed when people donate on my behalf. I hope you guys know how appreciated your gestures are. See? Teary.
May month comes with a lot of MS thinkery for me. Campaigns are cleverly tagged with mottos about "raising awareness" because it's become gauche to say "raising money" even though fundraising is the major player in organized events. What does it mean to raise awareness? I have MS. What awareness am I working on?
As I'm writing this, my friend Brian got me closer to my end fundraising goal. I haven't spoken to him in person in over a year. Yesterday Mary donated, and I'm fairly certain we haven't spoken face-to-face since the mid 90s. My point? If I put my face out there publicly as "someone with MS" great people like this get extended the opportunity to help us. We are humanizing MS. Showing the world that people with MS cover all walks of life. Hiding MS is no longer an option. To get the help we need, we need to shine the light on that patch of darkness.
This kind of personal awareness helps create and maintain support initiatives and educational programs on the community level, not just find research. By connecting real faces - our faces - with the disease we raise the level of compassion and understanding among those in the non-MS population. Those people volunteer and become the backing we need to work on employment measures, caregiver support and an endless list of other services that are desperately needed. 
I can say for sure based on my work with an MS forum, that not everyone with MS wants to be known as someone with MS. Some see public blogs and fundraising as putting the focus on the disease rather than the person. There may be some truth in that, but I'm pretty sure my friends and family still see me as a real person and not just a walking creature of demyelination. For me, this is my way of saying that I have MS and people with MS are real people who don't always have the means to advocate for themselves. I don't think I'm doing anything selfish or all that courageous here. I just want change and sitting on my ass and doing nothing gets me nowhere. 
Even if I stumble, I'm still moving forward.

Sunday, 12 May 2013

Shadows and light

MS is scary stuff. You can build up a wall of science and research to hide behind, equip yourself with the newest disease-modifying drugs, a good diet, and exercise, and try to safeguard yourself with objectivity, but when faced with MS symptoms, it's still scary shit.
The disease itself is terrifying - knowing my body is chewing on its own brain and spine isn't exactly comforting. Then I look at the available treatments and the lists of side effects make me want to curl into a tiny ball…around a frosty beverage…and take a nap. As much as I try to keep a positive attitude about having MS, sometimes an MS moment breaks that confidence and all that fear comes rushing in.
To paraphrase a well known MS advocate, we talk about "lesions", and "myelin", and "white matter", and "gray matter", but when you pull back all of the clinical terminology, you're left with "holes in your brain". Seriously people, there are holes in my fricken' brain! WTF?
One of the first anatomy lessons you learn as a kid in school is that your brain is the control centre - it's the CEO, the CIO, and the COO all in one. It's where we store our knowledge and where we safely tuck our personalities. Knowing that an unknown entity can eat away at the very root of what makes me me is disconcerting.
Once you receive a diagnosis, your career can be extinguished, your relationships can be dashed, and your dreams and expectations? Good luck maintaining those! Your initial annoying symptoms become a looming harbinger of what may come. 
So, how do people not crumble under the mountain of MS worries? Well, just like the course of MS in each person, our reactions differ as well. Some people run like the wind from the doctor's office, leaving behind all documents and results that may suggest there's Something Big wrong. They ostrich their heads into the sand and pretend everything is Just Fine. Like with everything, some people turn to religion. Others immerse themselves in science. The remainder balance it out with a little knowledge of the realities and try to just keep swimming.
All of us learn to take it as it comes. We develop a dark humour about it - injections, death, disease. We start fundraising to raise awareness or maybe to make ourselves feel like we're Doing Something. Anything. We become "People with MS" - a tangentially-connected motley crew who can nod knowingly when people talk about pitting or fatigue. We even have a fancy little abbreviation - PwMS. We adapt. Sometimes we flourish. We find ways to work with the changing circumstances. We develop ways to tell our friends and families that we can't do things because we're really fucking tired, as hard as it can be to admit sometimes. I tell Nance I'm out of spoons when I'm getting to the end of my energy for shopping. Those potentially extinguished careers, relationships and dreams? Handle them with care. We learn to communicate and adapt or we lose what's important.
Mercifully, the anticipation of what is to come is worse than the reality. My last MRI went swimmingly. The initial numbness I had went away. I'm still just me.
I was laid off not long after being diagnosed. The fear of never finding work again was very real but here I am with deadlines and responsibilities. That said, if anyone knows of technical editor/SME contracts, drop me a line. The freedom from the day in/day out allowed me to rediscover the person that I am. I have tried to connect or reconnect with parts of my personality that those holes have not touched. Note: I am not a great artist, but I have tried.  
If I knew when I was 20 that I'd near 40 with multiple sclerosis, I'd have been horrified. The idea that some day I may need a wheelchair scares the dickens out of me but then I see this kid racing up and down the road daily - zooming along in his wheelchair - off to buy lettuce and milk and whatever he needs. Sometimes things that burden us can also enlighten us and free us. Don't get me wrong, I don't think every dark cloud has that platinum lining, but some of them do. 
I've never understood the religious concept of being reborn but I do feel like the older I get, the more I drop all pretense at superficiality and end up saying, doing, and writing more truthful things. Maybe pretense is something that's falling out of those holes. I have found a greater understanding of who I am and I am honestly quite embarrassed by the unimportant things I used to worry or care about. 
I'm still afraid and pissed off when faced with MS symptoms but I'm still here and I think I'm developing a better me.

Saturday, 11 May 2013

Be aware: May is MS awareness month I may post fundraising links and whatnot.

I have no set idea of anything to talk about, so let's see what kind of rambling mess comes out, shall we?

First off, regular life business…(aka, Dog Ramblings)
Abigail has been cleared for more exercise! Swims! Walks! Let's hope it puts an end to the growing reactivity to every bump and whisper. Lately she's been barking at every opportunity. I've seen a little bit of progress this past week and hope for more in the weeks to come. I feel bad for her - she hardly sees anyone but us and come on - we're just plain boring. She did have little visits from a few friends popping by lately, so maybe that increase in exposure has been part of the increasingly good outcome. That and the new Freedom harness. We can't collar walk her yet, for fear of her lunging (see aforementioned reactivity) and neither of us has ever loved her EZ walk harness, so we bought the Freedom harness and it's fantastic! It doesn't change her stride or fit around her legs weirdly - it's just a great little body harness that she seems to like and feel much more comfortable in than the last one. 

Tangents, yes. I know. I ramble. You were warned. The surgeon said Abbey's leg has healed about 95% which puts her a little ahead of the game. The other yellow lab who had the same procedure the same day was also there for a follow-up exam and the surgeon said his leg is about 65-70% healed and that was fairly normal. Shocker - super dog makes impressive strides. Her weight is down slightly from our last vet visit during which we learned she had gained over 4 lbs in the 3 months of reduced activity, so it's nice to know the lower cal food is helping balance the lower amount of exercise. We can start building up her exercise again now (adding another 5 minutes every 3-4 days). At 12 weeks, everything should be back to normal and we can try some off leash walking and start introducing her to doggy friends again. This is only the 7 week mark, so we're being conservative and using a long lead on her waaaay before we let her off leash.

Are your eyes glazing over yet? I'm almost done with the dog talk…
So, as soon as we got home, we grabbed the long lead (30') and took Abbey for a little swim - her first in months. She was beyond excited. Grabbed her toy, ran into the water, ran out…forgot the point of fetch altogether, but we just let her do her thing to get the sillies out. Sidenote: people, if you're going for a little campfire next to a gorgeous lake, haul out your glass bottles. Tossing them into the fire and leaving the broken mess means people like me and many of my friends have to worry about our dogs stepping on it. 

Moving on...
Nance and I headed to the Fredericton market this morning to support Ange's new business. It was a chilly, wet day in Freddy, but worth the trip. We bought some delicious raw treats and a few muffins chatted with Ange and Greg some, and then wandered the city a bit. We had an hour or so to kill before picking up race kits for friends running the half marathon tomorrow, so we twacked. Had fabulous coffee. Walked the dog with her new sidekick, Sherman the sheep, of course. BTW, Fredericton marathon folk - your set-up left a lot to be desired - it was overcrowded, there was little direction, there was nearly a complete lack of signage for anyone not living in the city, it was terribly loud and far too warm in the main room - all in all, very surprising. I love race environments and the Blue Nose and PEI have spoiled me on what to expect, I guess. After pick-up, we headed on over to the poutine restaurant. We were both intrigued. I'm all for healthy eating, but now and then you have to try out something different and it's not often you find vegetarian poutine. So, I got a veggie traditional. Delicious for the first few bites, but I get near instant lead belly from fries and any type of gravy, so the joy was short lived. If you don't feel like you've swallowed an anvil when you've eaten fries, and you like poutine, I'd definitely recommend going there! Lots of options. 

The race environment took a toll on my head and I thought the grease might help fix it (waaay wrong), so I pretty much slept or tried my damnedest to sleep on the drive home. I started the day feeling groggy and struggling a smidge for proper word retrieval, a sure sign that I'm tired, so I'm not surprised that adding a lot of heat and noise created just the right blend for a migraine recipe.

Once I got home, I sought out my good friend Advil and settled in for a much needed nap.

Post-nap, I woke with one purrsome little guy tucked under my arm. I love this cat. He is one of the sweetest beings I've ever met. If you have followed the saga of Nik and Rings, you know that this was not always my spin on him. He used to attack me at every opportunity - territorial little bastard. But I adore him. Waking to find that he has snuck under an arm or behind a knee warms me - literally and figuratively.

Where was I? Oh, right. I woke from my nap and after I had a murmuring discussion with Ringo, I put my glasses on. Step one in the Get TF Up process. I blinked at the Roman blind in the window and noticed that the pattern was all blurry in my right lens. Between my own fingerprints and Abbey's dog licks I am forever cleaning these things, so I took them off, wiped the lens down, and put them back on to find…no difference. 


So, I am writing this with migraine-induced optic neuritis (gee, welcome back) in my right eye. The left is totally fine. The right is not. It's like manually focusing a camera lens. I look at something and I can sense the eye "dialling in" to become sharper. It is a completely bizarre sensation. I feel a little like the Terminator. 

Anyway, I'll consult the doc if it doesn't take care of itself in a week or two. There's nothing to do but wait or take steroids anyway, and I'm not big on anything that could potentially affect my bone density, so we'll see what time brings. At least it's only in one eye and the acuity is there after that initial readjustment. Bummed that the ON is back at all, but in the words of Pema Chodron, "It isn't what happens to us that causes us to suffer; it's what we say to ourselves about what happens." 

It's the wee hours of the morning now, so I'm off to give yellow dog a neck snuggle (I love the feel of her ruff) and am off to bed.

I hope this May month brings you all much peace and good health.

Tuesday, 9 April 2013

Ring Theory, oh how I love this article

The LA Times put out a great little piece on how to talk to someone struggling with crisis.

You can read this bit of awesomeness from Susan Silk and Barry Goldman here.

I cannot begin to tell you how much this article speaks to me. When I seek support about losing my vision when I get migraines, please don't take the commiseration angle and tell me about your own headaches in an attempt to normalize my MS. This isn't about you and that approach belittles my state of being. I assure you, when you're looking for support, I'll try my best to make you feel supported and heard. I may not be able to help, but I will try my best to employ this theory when others look to me for empathy. Crisis is not a competition. We all own our little bits of darkness. I'm not looking for you to make things better. Just listen.

It feels like years since it's been here

Feel that? Close your eyes. Feel it?

It's the sun! That gorgeous, glowing orb is once again shedding heat and not just light!

I reckon it's nearly time to declare that Spring has arrived. The groundhogs are out and about (at least one squeaky little kit so far this year), the squirrels are racing around, and even the crocuses are showing their delicate heads. I love this time of the year - feels good to get down to a mere two or three layers of clothing again.

On this thread of vim and vigour, Abbey is on week two of recovery from her TPLO surgery. My house is like a canine spa these days - moist heat therapy, cold therapy, passive range of motion exercises, stretching, massage - everything but pedicures and cucumber eye pads. The living room floor is covered in blankets for her to rest on. Lots of non-slip padding to help with her comfort - yoga mats are strewn from the back door to the blanketing. All seems to be going well so far (fingers crossed, thumbs held, wood touched and knocked). She's been using the repaired leg pretty consistently from the time we picked her up from the surgeon, so here's hoping her recovery continues on this positive path.

And speaking of positive paths, Americans with MS have a new therapy option as of Tecfidera (formerly called BG-12) has been FDA approved and is making its way into the homes of our neighbours to the South. [edit: since starting to write this post a few hours ago (hush, I'm working at the same time), Health Canada has also approved Tecfidera!] As I mentioned in my last post, the mechanism behind Tecfidera is still not fully understood, but it appears to potentially be a trinity of sorts. It shows promise of antioxidant, immunomodulatory, and anti-inflammatory properties. Now, y'all have hard me ramble on about antioxidants helping fight the oxidative stress people with MS have before, so I won't bore you with that again, but immunomodulation is when you adjust a body's immune response to a preferred level. Anti-inflammatory is pretty self-explanatory - good stuff that fights off inflammation.

There have been two studies on Tecfidera, known as DEFINE and CONFIRM. In these studies, Tecfidera reduced MS relapse rates by ~50% (over placebo), and reduced the progression of disability by ~30%. [Sidebar: I so hate the word "progression" when used in this way]. If you're keeping score at home, the "Big Four" MS drugs (Copaxone, Rebif, Avonex, and Betaseron) all reduce relapse rates by around 35%. A fifth common drug, Tysabri, cuts relapse rates by ~65%.

So why all the kerfuffle about Tecfidera? Uno, it's an oral medication, so no injections! Dos, big reduction in relapse rates and progression of disability. Tres, it doesn't have nearly the same risk of a really ugly (oh yeah, and fatal) viral disease (Progressive multifocal leukoencephalopathy, or PML) as Tysabri has. To recap, Tysabri is mentioned above as cutting relapses the most of all the MS drugs. Cuatro, there's a chance that this drug provides the be all and end all desired property of any possible MS therapy - neuroprotection! If there's possibility that a drug can protect the CNS from whatever the hell causes all the damage in the first place, we have started on a weedy, rocky road to suppressing disease progression. Now that's progress.

That was the extent of my counting in Spanish, btw. Multilingual I am not!

Tuesday, 2 April 2013

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)

Friday, 15 March 2013

In the news - Chris Wright

And on the subject of misconceptions…

ESPN ran this article this week - the first ever NBA player with MS. Awesome! Look, we can be athletes too! [sorry, slight facetiousness there] 
As great as that is, there are a few things in this article that irk me.
Mavs president of basketball operations Donnie Nelson said. "He's a high-character, tough competitor who's had to consistently overcome personal challenges like MS to put himself in this position. The physical obstacles he's had to contend with are significant."
No, just no. MS is not a personal challenge. We don't get to "take on" MS and overcome it. This isn't some tale with a scary dragon and a hero. No doubt he's had to contend with physical obstacles. I can't even imagine how his body is dealing with the incredible heat it must be enduring*. He's in remission. I hope he stays there. If not, I hope he's in the NBA long enough to make enough money to make life with MS a little easier. But to say he has overcome MS is incredibly misleading and naive.
Added coach Rick Carlisle… "It shows determination and an element of resourcefulness, which I think is a very important quality on any NBA team…"
WHAT? He's resourceful because his body went into remission? How about taking some of the pressure off this guy? Holy crap. What happens if he relapses? Is he less resourceful then? Less of an inspiration?
There are other things here that bug me. I find the idea of someone with MS doing something fantastic and being deemed an inspiration condescending. I have a very rich, regular life. I get it, though. Aim for success, regardless of your physical state. Just know that for many with MS, success is getting out of bed, tying shoes, making dinner - really basic stuff. That said, congrats to Chris Wright for making the NBA. 

*Uhthoff's phenomenon, a worsening of neurological symptoms that's a manifestation of heat intolerance, is incredibly common in people with MS. Just try to have a sensible conversation with me after I have a hot shower, blow dry my hair and attempt to use a flat iron. 

And now I can breathe

I just checked the mail and found an envelope from Blue Cross addressed to me. Gulp.

You see, every year I have to have my MS medication, Avonex, approved by insurance. It's a special authorization prescription, meaning every year I have to fill in a form, send it to my neurologist to complete, and then send it on to the insurance company. Then I wait. Fingers crossed. They often reply suggesting I try the provincial prescription system for assistance first, but I don't meet the criteria. You have to be under the poverty line to get assistance. Knowing that, I still have to apply, get rejected (all by MAIL, which can take weeks), and then send proof of that rejection to the insurance company. Then I wait some more because the insurance company also sends verification only by mail. 

Timing this takes precision since I only ever have 4 weeks worth of Avonex at a time.

Blue Cross has said no in the past. [cue the wailing and gnashing of teeth] Paying for Avonex is no small feat. It's ~$1800 for a monthly prescription. I have paid out of pocket in the past and it's not something I'd be able to sustain long term. I suppose if I tried, I'd probably eventually hit the poverty line I'd need to qualify for provincial aid. Is that a silver lining?

So, back to my envelope, I am approved for yet another year. When I read the letter I felt a wave of relief followed by anger. I hate feeling this way every year. Resentment. I hate feeling like I am part of a faceless, nameless system and someone else controls the fate of my health coverage. Someone I never even talk to.

But for now, I am thankful. Another year of peace.

Wednesday, 13 March 2013

Yes. Yes, I can.

I was getting blood drawn today (routine liver check) - unfortunately it's not as fun as getting one's picture drawn, but it's not all that bad - and the nurse struck up an odd little conversation.

There's nothing on my form to suggest I have MS and I've never met her before, but she randomly started telling me how she was in a great mood today because she was told she doesn't have MS. I...wasn't sure what to say. I congratulated her on her good news and she kept talking, telling me how she'd "have died" if it had turned out to be MS (you're gonna die some day anyway, hon). She had been having numb feet with painful pins and needles for weeks and her doc ordered a head MRI. It showed little spots but not lesions (not sure what she meant by that...if they were dilated Virchow-Robin spaces or what), so she got a clean bill of health. The numbness went away on its own.

She told me all this as she drew blood and then turned to me and asked, "Can you imagine being told you have MS? I don't know if I'd even be able to work". I did what felt like the right thing and let it go without opening up about MS. There's a difference between raising awareness or clarifying misconception and making someone feel like an ass.

I'm glad she doesn't have MS. I'm also glad she has great technique because she didn't even have to work to find my thread-like veins. 

I'm not sure what to make of this encounter. There's no moral or lesson here. Just a funny little happenstance. The people that you meet when you're walkin' down the street...

Wednesday, 27 February 2013

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.

Tuesday, 26 February 2013

Breathe a little bliss

Ignorance is bliss. 

Over the past few years that phrase has been on replay in my mind. I've been helping moderate an MS forum and the amount of information that some people with MS have researched is astounding. I like to think that my growing pile of research papers into diet, supplements, exercise, vascular issues and the like is keeping me informed, but egads, some people live and breathe MS research. They can quote published articles, right down to the semi-colon. They can tell you which countries have approved Sativex and what drugs cause heart palpitations.

And I wonder why I can't be that person. Or, maybe I know why. Maybe I'm afraid to take on MS as a hobby too. Maybe I'll find things that terrify me…god knows that has happened on more than one occasion. Maybe I'll find statistics I'm not aware of. Maybe I'll lose myself.

See, in all of this, I've maintained that MS is a part of me. Like the extra 10 lbs I picked up last Fall and have yet to shed. Not welcome, but largely ignored.

I’ll admit that I occasionally probe libraries for research papers and have amassed everything from the therapeutic potential of NrF2 activation and the effects of dimethyl fumarate on neuroprotection and immunomodulation (say that 5 times fast) to thoughts on MS being a vascular disease or MS improvement following removal of heavy metal intoxication. I'm interested in MS, but my reading isn't a daily thing. I'll still pick up something from a Giller or Booker Prize lists before pages and pages of abstracts. I follow Terry Wahls, the MS Society, and CCSVI groups on Facebook but I don't pore over every message or post. I want to be informed, but I also want to have a large, rich life outside of MS. I'm afraid that constant research would bury the person I know myself as.

It seems like today's world offers so much by way of technology that it's a double-edged sword. We are more connected, but more isolated. We can fact check our mechanics, doctors, lawyers, and even car sales people until the cows come home. We are armchair experts in every field as long as there's power and cell coverage. I love technology. I love that I can open my laptop and play Scrabble with my mom who lives many miles away. But I hope there's a point where people can step back and step outdoors. Breathe the fresh air. Let a little ignorance flow over them.

P.S. Yes, I've been away from here a long time. You were warned there'd be long stretches of nothing. :)

P.P.S. Nothing new on the MS front for me. I feel well. Can someone convince me to walk another half marathon so I can get my excess 10 lbs ready for a huge hike this Fall? Someone? Anyone?