March 9, 2014
Now that I’ve worked with hypermobile bodies (my own!) for a bit, I’m realizing a possible connection to MS.
One of the unfortunate consequences of MS is that we tend to lose muscle mass. If any of us have any predisposition toward joint hypermobility, losing more muscle mass will just make things worse: I’m not just talking about the big muscles (quads, biceps, etc) but smaller ones that help to stabilize our joints and hold them in place.
So, it’s no wonder that someone whose MS has progressed has trouble moving… and might be mistaken for a drunk when walking. Unstable joints, whether or not they are clinically diagnosable as “hypermobile”!
What to do? My bias would be to find a Pilates instructor (or even a yoga instructor) who specializes in therapy. Rather than putting you through the same grueling workout as the normal folks, they should know what your needs are. And, tell them that joint stability is a high priority for you–maintaining the ability to walk and move. That’s something I work on in my daily exercise routines.
March 6, 2014
Ah, another (kind of) science geek moment……..
Most of the patients I work with (I also teach Pilates/functional exercise at an occupational therapy clinic) have a lot of tightness, mostly from poor ergonomics, poor posture, poor everyday movements. (Like so many of us…) But they have a handful of patients who, for a variety of reasons, have hypermobile joints. These are the kids who’d play around with their “double jointedness” growing up, and still have that issue as adults. Because their joints lack stability, it can cause (possibly) wear and tear, leading to arthritis and chronic pain.
Which is where I come in, as a Pilates specialist. So many Pilates exercises (and despite the reputation of Pilates, the exercises do not have to be challenging!) emphasize stabilization! While I may not be able to completely solve their hypermobility issue, I can hopefully give them some tools to make them feel less wobbly.
Or, shall I say… us? I have a bit of hypermobility, myself. I’m not an extreme case, but it’s been causing me to have to back off of my beloved yoga (wrist pain). It’s what brought me to the OT clinic where I work, in the first place. (I had/still have some hypermobility in and around my shoulders, causing some compression that led down into my hands with nerve symptoms.)
And… it’s given me an idea for a big project I want to start over the summer, when I’m not teaching so much. Keep your eyes pealed… (but don’t use a vegetable peeler. That just gives an awful mental image.)
March 3, 2014
A few weeks back, I was at the gym lifting weights, and the Olympics were on in the background on the TVs… (and I thought, hm, week 2 of the Olympics, and here’s my first glimpse. Huh. And likely my only.) Most of my fellow lifters were slowly curling… pause… watch TV… curl again a minute later… pause… watch TV…
I guess it’s good that they were at the gym and getting something done (perhaps at the rate of two sets an hour?) but it made me think about the folks I’d been seeing on Facebook, talking about “how they’d like to get there (the Olympics) someday” and “I still have a few good years to qualify, don’t I?”
Well, here comes my very unpopular opinion.
Don’t just sit on your butt and watch the Olympics and be all talk. Go and do something. Train. Get strong. Life is fleeting.
(Better yet, pull out the resistance bands or your equipment of choice and get a two-fer in front of the TV, if you so choose!)
It’s OK to have chill-out times every now and then. The brain needs it.
But if you take some of that time and put it to good use… you never know where you can go. You’ll surprise yourself. You’ll friggin’ amaze yourself.
Go do it!
February 28, 2014
These days, I have so many rituals that I tend to, primarily for health maintenance, that it’s a wonder that I have any day left at the end of my day. Let’s see, here’s what I actually do accomplish…
- Daily exercise, natch. I’d been focusing more on strength training to counteract the effects of MS, but the naturopath suggested more cardio to increase my circulation. OK, more time devoted to exercise, so I can do both.
- An apple cider vinegar shot in water every morning. (This one doesn’t take much time, at least, other than the amount of liquid I’m consuming and the number of bathroom trips!)
- My four cups of detox tea each day, and brewing a new batch sometime during the day. I’ve noticed the benefits (decrease in headaches, decrease in repro system pain) so I’m keeping that one up.
- Daily yoga, if even for 5 minutes.
- Daily dose of cruciferous vegetables, to improve my hormone circulation.
- Being in bed for at least 8 hours a night, if not being able to sleep… I’m pretty good about sleep most nights…
And then, there are the other rituals I should be adding, but in addition to working 60+ hours a week, they often fall off the plate…
- Meditation. I’ve started back on twice a week again, since it did noticeably improve my focus.
- Regular piano playing…….. I’m finding myself only “practicing” at weekly rehearsals.
- Running more than once a week? How else am I going to get better… (But I’m a rain wimp. Not a very good Seattleite, eh?)
- Dealing with my Sunday laziness who always wants to just work out at home and not go to the gym.
Amazing how I used to be so much more spontaneous… I actually really enjoy spontaneity… but these rituals keep me and my life intact. Maybe one of these days, I’ll become more stable…
February 25, 2014
Here in the Pacific Northwest, we’re always complaining about our chronic, constant rain. (But we never carry umbrellas. How silly is that? It’s a Seattle thing…)
But reading the news this entire winter season–how so much of the rest of the country has been pummeled over and over and over by snow and ice and snow and ice and snow and snow and snow and snow and….
We’re pretty lucky to be here.
We’ve had one day of snow this year so far, and it was a Sunday night (so it didn’t impact work at all). And it was mostly gone the next day (again, little impact on work and life). Life goes on as usual… which is pretty darn good.
In the scheme of things, whenever I want to complain about little things (my coffee’s cold! I have to go back and get another hot cup! call the WAAAAAmbulance!) I have to remind myself how lucky I am… I have access to clean water… I have a warm building to call my home… and that really puts things all in perspective.
February 22, 2014
Some days, those of us with a chronic disease (or, with any other chronic issue) feel ready to give up on life. Take the easy route… whatever that means to you. However, there’s always reason to keep pushing through…
- Someone else cares about you. Significant other(s), friends, family. They all want us to improve as much as we can, and we owe it to them to be the best we can.
- While new treatments are slow to be approved, there’s always something we can do to improve ourselves. I’m talking about treating ourselves more healthfully in general, improvement of diet, more frequent meditation?
- You can learn something from everyone you meet. I’ve been surprised by the new information I’ve learned from random people in odd places, some of which has led to improvements in health. Get out and talk to people–you never know where it will lead!
- Most of all, every day is a new day. Each day gives us a fresh start, a new opportunity to begin. Please don’t hold out on yourself!
So when you think you’ve reached the point of final despair, please don’t throw in the towel… try adjusting your attitude a little.
February 19, 2014
So, I’ve mentioned before that I don’t talk about my MS at work.
But I teach health, nutrition, and anatomy/physiology at a college.
This quarter, I’ve been teaching a lot about the nervous system, and I have an inquisitive group. How much I’ve wanted to “come out” and be more forthright with my examples, and not quite so theoretical.
For instance, I’ve had trouble with liver inflammation from my Rebif… this quarter, the liver comes up in A/P class, so I talked a while about how the liver metabolizes drugs. (They think all of my knowledge comes from my grad degree and my previous pharm industry work. Hah. Notsomuch.)
And just today in class, I was discussing cerebrospinal fluid… this is the stuff that gets “tapped” in a spinal tap? I showed them a pic of a spinal tap from Google images, and told them that there are a few diseases and infections that can get diagnosed this way… they asked me which ones. I told them meningitis (bacteria in the CSF), but I didn’t want to be quite so forward with all of my MS information! So I paused as if I were racking my brain and then mentioned “I think they also use spinal taps to diagnose MS…”
I guess, in the end, all of my life experiences enrich my teaching and my students’ experiences? One of these days, someone’s gonna find me out. Until then…. staying stealth.
February 16, 2014
Why?? you ask.
Last I saw my MS specialist, as well as my regular primary care, for my headaches (which were pretty darn out of control), they both suggested I see a locally-renowned headache specialist at University of Washington. She’s supposedly hard to get into, but has insight like no other, I’m told. (Wonder if she takes alternative care into account. I still don’t know.)
Anyway, I got both of these referrals in early January. A week passed, and I decided to become more forward–called the clinic myself to schedule the appointment. “Oh,” they said, “we just got your referral a few days ago. And it takes at least a week (!!) to process referrals. At that point, you’ll get a call back from us to schedule.”
A week later, I got a letter in the mail telling me the same thing–to be patient, while they’re processing my referral. Now, I understand I’m not the only one dealing with chronic pain and seeing her for this issue, but… really?
Shortly before I received the letter is when I started working with the naturopath group. Since then, my symptoms have improved greatly. (Not gone away entirely, but reduced by a good 50-60%. That’s HUGE.)
And you may have guessed…. NO, I have not yet received any sort of contact about making a phone call with said specialist.
(I’m also struggling with the same system to schedule my current follow-up MRI–also requested back in early January, caught in referral hell. How many phone calls from me does it take… Ah, the new medical system!)
February 13, 2014
A few days ago, I had a one-month follow-up with my naturopathic team. They were very pleased with my decrease in symptoms, but I attributed that to my staying the course. They seemed amazed at my dedication to the exercise, my (meager) dietary changes, etc–but as I told them, if I find minor tweaks that make a big difference, you bet I’m going to stick with them!
Which makes me ask the rest of the country… the rest of the world… can you come up with a small tweak that will change your life in a big way? Try it… see what happens…
While the main doctor wanted to see 100% relief, I was happy to get the relief I’ve had (50-60%, and hoping it continues). We’re also adding a few changes to hopefully improve my MS therapy:
- While I already take Vitamin D (and tested within normal range) and regularly consume all Omega-3 fatty acids (which have been shown to help repair myelin), they were suggesting a higher therapeutic dose. I am taking two large spoonfuls of (lemon-flavored, refined) cod liver oil per day.
- I am also starting a morning regimen of 1 tbsp apple cider vinegar, to stimulate my digestive system. Some evidence that this helps with autoimmune disease. I doubt it’ll hurt.
- And for myself, I’m going back to meditating at least twice a week. (fallen off the wagon…)
Small changes that I can maintain… !!!
February 10, 2014
The ever-elusive balance… in life, activities, work… etc.
But I’m talking about literal balance. That thing that those of us with MS tend to lose, as our muscles get weaker and our nerves don’t fire so well. And… when our balance starts to go, we walk around on a snowy or icy day, and… BAM, injury. No bueno.
Most people will immediately jump to trying to stand on one leg as a balance exercise, but on a bad balance day, that’s really challenging. What else can you do?
1. Heel raises. (Yes, even these work the muscles around your ankles, and can be a challenge!) Stand with your feet under your sit bones, parallel. Knees should be straight but not locked. Pelvis should be neutral. Rise up onto your toes, maintaining contact with all ten toes (not rolling in or out on your feet); then lower back down. Repeat for a total of ten times. Rest 30 seconds, then go for a second set. If you need assistance, hold onto a wall or a chair.
2. Tandem stance. All this means is standing toe-to-heel, with your feet in a straight line. Stand next to a wall when you “assume the position”, as it’s trickier than it looks. When the toes of one foot are in contact with the heel of the other, stand straight and hold for 30-45 seconds. Change to the other side, and repeat. (You may touch a wall lightly for support if necessary.)
You can do these exercises every day, and they’ll help build strength in the small stabilizers. Hopefully you’ll notice fewer turned ankles, improved walking ability, and better balance!