Saturday, 10 June 2017

You must crawl before you walk

Have a good look at this photo. This is Erin Yungblut - from 2011. At this time she was skiing for Madill, racing the final leg of the senior girls relay. What a race it was - maybe you can tell from my reaction? I was pretty excited - that's me with my arms in the air.
This is Erin now, racing as a biathlete for Team Canada. She has gone a very long way - from Wroxeter to Canmore (and every Nordic nation) in a short amount of time. Talk about hard work! The hours of training she puts in everyday are quite astounding. If only I had her drive! Check out her Blog

This is the two of us at physio in Wingham last week.  We were taking a break from "learning to crawl". Now, she is the one cheering me on - how the tables have turned! Even though she is not home all that often we manage to pack in a meaningful visit when she is. I am so grateful for her ongoing support.

Crawling is HARD. OMG it was hard. My arms were shaking, my face was red and I was just about DONE.
It's a bit hard to tell, but here is what's happening: I am attempting to lift my knee off the mat and push it forward. All the while I am trying to stay balanced side-to-side (requires core) with the help of Mark and Erin. Some knee pull-through attempts were more successful than others :) Not bad for a first try. After that it always gets easier. Right?

Tuesday, 6 June 2017

The last frontier

Skin. It is the largest organ of the human body. Maybe you didn't think of it as an organ? It's actually more like a system, but let's not get too complicated. Multiple types of tissues working together; nerve cells sending and receiving messages, glands secreting sweat and circulating blood to regulate temperature and water levels, protecting our body from being viciously attacked by bacteria and viruses that surround us every day. That is a lot of responsibility. So what happens then when some of those jobs can't be performed? Do you die? In short the answer is no, but the longer version is what has been stewing around in my head for quite some time.

It all came into my mind yesterday. The kids and I were listening to the CBC show called "Out in the open" which focuses on topics that people are thinking about, but maybe not talking about. Yesterday's program was about the loss experienced by those who have had miscarriages - not a particularly uplifting topic, but neither are most of the topics that people don't talk about - which is WHY they don't talk about them. Either that or they are personal body issues that are considered to be just plain gross. At the end of the show they invite people to call or email their suggestions about a topic, which was when Ella suggested that I should. I said that I could talk about what it's like to live with paralysis because most people don't know.

So off I went, later that day, to the CBC site to make my pitch, "tell my story". While I was typing I ended up going in an unexpected direction. In the end, I realized that I had been thinking about it but, had never put it into words. Paralysis is so much more than just not walking. It may have started a few weeks ago when one of my Parkwood friends was sharing some of her stories of getting back out there after having had her heart broken. One of her dates was starting to do the "can you feel this?" (something my kids did with me very early on) and her response was "oh, so we're going to play this game, are we??"

But maybe I have been thinking about it long before that? Which is where even I get uncomfortable about sharing.

Do you remember in biology class seeing the image of the sensory nervous system, the one that shows how the lips and hands are super sensitive compared to all else? It shows them as grossly exaggerated? Well, even though this is true, the rest of the body is important too.

Okay, Julie. Just get to the point already? I miss it. My skin, that is. Not that it's gone, of course. But what it should be doing for me - I miss. There's the physiological stuff - sweat and temperature regulation, sure - but it's the being able to feel. Ever spoon with anyone? The handle is just as important as the spoon itself. Have you ever tapped people on the knee while having a conversation? Guess what? Can't feel that either. You know that feeling of being so close there is no space between you? No daylight or air exists in between? Not only does that rarely happen, I'd have to look and see if it is. I can't tell. Touch is so important - you don't know what you've got until it's gone.

I know I have talked about this before, and I know that not everyone is a "touchy" person, it doesn't score high on your needs for feeling loved, but it does for me. And now that two-thirds of my skin can make contact with absolutely no sensation or response? I need it more. I hug most people - even if I don't know you that well and sorry if you are not a hugger. My kids lay in bed with me most mornings even just for a few minutes. It's wonderful and I give them long hugs every chance I get.

Theo's never been a touchy/feely person, I would be the one to walk up to him and initiate a hug. We are in a different place now. When I roll up to him my forehead hits his bellybutton, maybe. It does not accomplish the desired effect. We have pushed-together twin beds (my side has the head/foot going up/down option) which make a King. I go to bed early, he stays up late. I sleep in, he gets up early. We used to go to our queen bed around the same time, read a bit, snuggle and fall asleep. Now it's different. I'm usually asleep when he comes to bed and he's long gone by the time my ears hear the first stirrings of morning. And I think he's afraid - afraid to touch and make my pain worse. But I'm not always in pain.

Our attempt at a selfie. I think we are too old to learn how :)
I have written about getting some motor function back - just a bit in my hip flexors. The reason that has happened is because I have been working hard to try and get a message to those muscles, only then can they respond. It's a multistep process. And I have had lots of therapists helping me. Perhaps what I need to get my sensory system - my skin - to respond is a continuous game of "can you feel this?" It should be part of my therapy. Theo should be my therapist.

Relationships are hard.





Tuesday, 23 May 2017

Nordic para style

A month or so ago I received an invitation. It came at a time when things were piling on top of each other on the calendar and I was just about to leave for Cuba. I wasn't sure that I was going to be able to make it work, but I knew that I needed to try. This was my chance to learn how it all worked, if I was capable and if I really wanted it. It is being back on skis. The invitation was for a dryland training camp for Para Nordic skiing. It was a weekend St. Catherine's, meeting at the YMCA and using the Welland Canal trail to ski on. Being at the Y at 8:30 am required a couple of overnights so I decided to take a traveling companion with me - someone who also loves to ski.

Michele Studhalter and I. Sporting our matching buffs - thanks Erin :)
Michele is one of my former student athletes. Freshly graduated from Laurier Business she has found herself a position as a marketing specialist in the start-up soaked city of Waterloo. She also has some serious training goals - competing in the Mt. Tremblant Ironman this August. So when I picked her up in Waterloo she piled all of her training gear, including her bike and her roller skis, into my car. Off we went, in the rain and the wind, all the way to Niagara where the fruit trees were all full of blossoms - so beautiful.


Michele has always been my video girl - when she was on the team at Madill we always had great end of the year videos to celebrate with. She has since upgraded to using a gopro - which was exciting and here is the YouTube of what she put together.

In true Nordic Skiing style we were out in all weather. The first day was, shall we say, damp? After that it got a bit nicer, but I was reminded about the difference wind makes - best to start with it in your face and return with it at your back - not the other way around!

Just like downhill skiing, Nordic requires a sit-ski that attaches with a regular ski binding to the skis. If you look carefully you will see a couple of different sit-skis that I used over the weekend. None of them were actually designed for me or fit me properly...so make-shift materials were used. The duct-tape is the most obvious but you may also see a car seatbelt, foam from a floor mat, a pool noodle, foam pipe insulation and lots of velcro. Red Green eat your heart out.

The tighter the bucket is attached to the user, all the better for maneuverability. In order to make turns  you almost need to throw your body in the direction you want to go, lifting your skis up off the surface (pavement in the case of roller skis or tracks in the case of snow). This was the part that I found quite difficult and I was grateful for all the coaches (especially Michele) who were there to keep me going in a relatively straight line. The second day I skied while seated in my wheelchair (instead instead of the sit ski) it was much easier for me to go where I wanted.

The best part was the feeling. Strapping on ski poles and just going. It was like coming home - hard to explain. With very few exceptions I have skied every winter since I was three or four. Not knowing if I would get back to it or not, this weekend was very revealing for me. I saw what others were able to do given the limitations their bodies had placed on them. I met women the same age as me who were not just skiing, but also kayaking! I completed a baseline endurance test on the ski erg (like an upright rower). I also got to be coached rather than be the coach (which at times was tricky!) Having someone to guide me, remind me to breath, the importance of rest and giving me permission to do so. It was so welcoming.

I came home with a new perspective, an understanding that I can push my body a little bit harder than I have been. If it were possible I'd say that I had a spring in my step. Michele and I both made new friends and connections - not just to skiing but to other sports and to our shared interests in coaching. It was like I was returning to a family that I had been away from for a long time, and I hope that I will be able to see them all again soon.

Speaking of perspective, Michele writes her own blog, and it just so happens we were thinking along the same lines! Michele's Blog

I'm not sure where this will all lead me, but you know I am going to try it again - even on snow :)


Sunday, 21 May 2017

Payoff

I have been getting behind on my posts. Too much going on and not enough time to keep up. I'm still working on a post from two weeks ago...but wanted to get this all down while it is still fresh in my head!

57 minutes of walking; 2443 steps!
I broke my own record this week. First, I drove myself to Parkwood, by myself. Usually, I have a friend or Theo or even one of the kids (but not behind the wheel) come along, but today I thought I would fly solo. It was one of the rare "high energy" level days - where two hours of physio doesn't completely knock me on my butt. I even managed to pick up the StopGap ramp paint (the first batch of ramps are nearing completion) and a few groceries for the long weekend.

It was an Ekso day, and because I got there early (interesting...) I was able to walk for the longest time ever. Boy was I exhausted (yes, Barry, I was tired).

Speaking of tired, I have changed up my physio schedule to reduce driving time so I am now doing one and a half hours with Bill and Mark once a week. One and a half hours is a long time - especially with the RedCord system - but it's working. I am on a roll with my new found ability to upload videos and make use of YouTube. This was from two weeks ago. I am using the support of my knees against the bed but am able to hold my hips pretty steady with their own strength. Look closely and you can see how I can shift my hips from side to side. 



Since then, the strength of my hip flexors has improved tenfold. The most exciting thing of all...my new muscles! They have been identified as the quadratus lumborum (QL for short) and are a part of the hip flexors group of muscles. I realized they were working last weekend when while laying in bed on my side I was able to roll my hips front to back. Just like that, all of the sudden they were working! As you watch this look carefully at what my right knee is doing. The left side also works :)


All this work I am doing to get the message through and get the muscles going - well, it's working! Patience, slow and steady and hard work on a whole new level. I feel like I am panning for gold, one tiny nugget at a time. 

Friday, 19 May 2017

Mountain Trike

Yesterday I came home to this in my pile of mail.

Outspoken is the publication from Spinal Cord Injury Ontario - the Not-for-Profit that works to advocate and educated for people with spinal cord injuries. I had written the article back in January (they publish quarterly). I attended the Abilities Expo with my Mom and Dad and thought it would be good for others to learn about some of the new devices that are out there. I am pleased with how the article turned out (with the exception of my misspelled name) - the layout is great and the pictures really add to it. Nice to see Jeff Adams (Canadian Paralympian) in them too - I had a great chat with him at the Expo.

I had not expected to see my face on the cover of the magazine. The photos were taken in November on a rare sunny day. I am sitting in my Mountain Trike. It was something I purchased to be able to get around on my property (10 acres is rather large when on wheels). It is made in the UK and took some time to finally arrive, but I'm happy with it.  This is what it looks like in action in fall and on snow. The wheels are connected to the push handles by bike chains and the steering is on the right handle connected to the third wheel at the back. The breaks are on both handles. It doesn't move as fast as I'd like it to, but it does well on uneven terrain.

This will be my first summer with it so I hope that I will be able to get out into the garden and around the property more than I did last year. I did get out in the snow, but it had to be pretty light and fluffy to get through it!


Thursday, 11 May 2017

Spread the word, share the road.

Perhaps is is because of the turning of the Earth toward the sun, but most likely it has to do with the people that have surrounded me in this season of spring. Those who have given me new ways to inspire my body to keep going and those who are determined to band together to make changes for the better. I will save the adventures of this past weekend for another post - where my companion and I travelled to make new friends and learn how duct tape is sometimes not enough. It's what happened yesterday that requires the most immediate attention.


This is the first of 60 share the road signs that are going up in Huron County. It is one of the initiatives put forth by the Cycling Strategy presented to the County back in January. These signs are going up in locations around the county where visibility may be tricky and as reminders that cyclist will be on the roads. We all came out to celebrate this sign going up and what a show of support we had! Not only did we have members of the cycling committee and people on bikes, we had the County Warden, and staff from the departments of planning, communications, works, the Health Unit and Scott Miller from CTV made a great story of the event.

It was a show of strength, that we are a team working together to make change. Spread the word, share the road.

Monday, 8 May 2017

Everywhere I go, there I am

 Even though it was only two weeks ago, it seems like a faraway place and time. This photo was taken in Santa Maria, Cuba where I went with my Mom, sister and sister-in-law, Karla. Girls only. It was a good time to get away, but boy was it hot! I spent most of my time in the pool - which was necessary, as was drinking mojitos - how else would you cool off? Lots of helpful people, good food and fantastic live music.

Not a lot of crazy stories to share - which is a good thing. Other than Sunwing trying to make me use an "out of service" chair to get on the plane resulting in me being the last one on...that was at the Pearson end. In Cuba we had wonderful service at the airport - nothing like four strong, good looking, Cuban men to carry me and my chair down the steps to the tarmack. Sorry, no photo. There is also no photo of the Cuban lifeguard who scooped me out of the ocean and carried me back to my wheelchair - total Baywatch moment - where are all the smartphones when you need them?

We are already talking about going next year. Aside from the lobby and restaurants being at the top of a hill, it was pretty accessible.

The one thing that I didn't expect, but hopefully one day will get used to, is that I was not able to escape my body. Everywhere I go, there I am. Although I did get some time to just chill and not think (I even did a sudoku and read almost a whole book), I always had to be thinking about my next step. How to get out of the pool, off the lounger and where the closest bathroom was. Surprisingly, the bathrooms were very well set up (better than many Canadian bathrooms - I'll save that for another post) it was just a matter of making sure I had given myself enough time (and assistance) to get there. At home I have everything set up in a way that I can manage without too much thought, but whenever I am elsewhere, I have to plan. Planning is exhausting to my brain.

I know that I am not the only one to think this. I am sure that those who have things going on in their own lives are not able to escape them just by getting on a plane - but we all (myself included) should be grateful for the ability to do so. There were people that I was listening to at the airport in Cuba on the way home - they were complaining about the food at their resort. I wanted to interrupt and remind them that they had still been away, in Cuba, on holiday. But I didn't. Instead, I reminded myself. The grass is always greener on the other side of the fence.

Atleast I got out of my chair.