Saturday, 11 March 2017

Red cord equals red face

This is the new physio system (top of the line, state of the art) at Glassier's Physiotherapy in Wingham. It is called RedCord. Ask anyone who has used it (able bodied or otherwise) and they will tell you it is tough. It is obvious from the look on my face how hard I am working here, but let me explain. I am holding onto handles that I used to do a rowing action which lifts my upper body off the bed. Then I pivot with my arms from side to side and lift my hips off the bed at the same time. This is the interesting part - I lift my hips. There is a strap under my hips but it is attached to the ropes above with bungie cords (stretchy ones) so in order for my hips to come off the bed my muscles have to engage.

If my shoulders and back were doing all the work here then my hips would stay on the bed. Can you see the air between me and the bed? I actually have core muscles (and maybe even some glutes and hip flexors) that are working to lift and turn my hips from side to side. This is new, it is different even from what I am able to do in the pool. This is good, because even though I am coming up on 20 months post injury, I am still seeing gains.

It even earned me a high-five from Mark - and that means a lot. If you want to see this in action checkout my facebook page.

Monday, 6 March 2017


On Friday night we attended the Inspiring Women in Huron Awards dinner. I had been nominated by my friend Selena and I asked some of my Huron County friends to join us. I truly cannot express how lucky I am to have relationships with so many strong women. This makes me think of how thankful I am. Thankful for Theo, my kids and my family - they are what keep me going. My friends - whom I can call upon for just about anything at anytime - listen and share and most importantly; they ground me. They help me to understand that I am not alone, not the only one with a challenging road. I am thankful for my physio team - Bill, Mark, Julie, Tammy, Melissa, Kristen and Barry - they have made my body recover in ways that seemed so out of reach not that long ago. I am thankful to Elaine - for everything but the shingles on the roof. I thank my lawyer and his staff - for keeping West Wawanosh Mutual honest. I am reminded of and thankful for the community support (from Blyth and beyond) with every passing bumper sticker and hello. 

I am thankful for the women who planned this event - honouring the female change makers in Huron. From arts and the environment to volunteering and sports - these women are the role models for our future generations. I was so happy to have Ella there with us, so she could see all the good things happening on our doorstep. She frequently asks why there is never anything "good" on the news - well there it was, all of the good things on stage for all to see. We also were treated to the spoken word magic of Holly Painter. What a powerful way to send a message. I was awarded the Be Bold for Change award. It was an honour. I hope to continue to create change in my community and beyond, but the only way I can do that is if everyone who is truly inspired (definition of inspire: to spur on) makes that change along with me. Honour your body, speak out about accessibility and share the road. 

Sunday, 5 March 2017

One step closer to normal

A long time ago I wrote about a conversation that I had with the partner of a fellow Parkwood patient. Her take on our collective new situations was  "the only way there, is through". This past week, after getting home from Parkwood, I had a lightbulb moment. An enlightening, life-reaffirming sign reminding me that I was indeed getting through. Closer to being "there" even though I have no idea what or where there looks like.

On that Thursday I had a chance to see my friend and mentor Chris. She is the dietitian for SCI patients (and more) at Parkwood, and this May, she will have achieved 29 years of living with paralysis. I have learned a lot from Chris, and not just about SCI nutrition. She has gone to bat for me, made connections for me and answered a million questions. I have lunched with her, bombarded her with emails, cried with her (more than once) and even toured her house. She is my inspiration.

So it was after I came home (after not having been to Parkwood for almost a month!) that I had my "closer to there" realization. Chris and I, like most friends who don't see each other often, did a little update about our lives. Then I launched into my "burning question of the week". This time it was "how do you do it?" I was referring to her ability to steam around the 4th floor like a mad woman, answering everyone's questions, talking to doctors, patients and nurses, charting, planning for meetings - in a nutshell work full time - and have a life with a spinal cord injury?

To me, because everything I do seems to take so much more time, I can not imagine how I will ever be able to make the time to go back at work. Having had her injury for so long now Chris can likely not recall the step-by-step process of making the small changes that add up to being able to work full time. But being the wise woman that she is, she gave me some great advice. It's just like adjusting to coming home after rehab. It is daunting, and scary, you need to figure a lot of things out, but you do. You plan, make your place as accessible as possible, and you tell others what they can do to help. You get through.

It makes sense, like returning to work after having your first child. Although that was important learning, it was NOT my lightbulb moment. My realization was how our conversations had changed. My burning questions are no longer about the basics of SCI bowel and bladder, they are about work. I have progressed along the continuum of recovery. One step closer to being in a place that seems, for lack of a better word, normal.

Thursday, 9 February 2017

The cost to arms

I used to think that I was developing bat wings. You know what I mean, those flaps of skin that appear on the backs of women's arms as they age? I was especially conscious of it while writing on the chalkboard and wearing something sleeveless. We can all picture our elementary school teacher conducting the school band/choir with a little extra "beat" in her arms? Right. Well if/when I do get back to teaching (not that I'll even be able to reach my chalkboard) I won't need to worry about saggy triceps because they are gone! The other day I was rubbing my arms (because they were sore) and I felt for myself the strength that lies beneath the skin.

You see the thing about having legs that don't work is that everything that your legs would have done now has to be done by your arms. Pardon me while I roll back onto my "Educating about Paralysis" soapbox.

Many, many people have commented on how buff my arms must be getting from wheeling myself everywhere. This is true, my arms are stronger from pushing my chair. But when I am in my chair I have the power of physics to help move me. (Right, Mark?) It's when I am not in my chair (or trying to get out of it) that the real strength comes from - lifting. Lifting my whole body weight to be exact. All 140 (ahemish) pounds. Every time I move from one surface to another I lift. From wheelchair to bed, wheelchair to car, wheelchair to toilet (and back - which is uphill). That is where the real strength is needed and comes from.

And exercise? You guessed it, all arms. Can't do legs only in the pool. Front crawl, back crawl, pseudo-breaststroke and almost-butterfly. All arms. No skiing without poles - skiing can only happen with poles. Hand bike - you get the picture.

So alas, my arms are tired but strong. It's my shoulders that I worry about. Without them I am pooched. I will not be able to transfer at all. So I have to protect them and make them strong too. No sloppy transfers or reaching too far. It also means being as lightweight as I can be. Someone (who will remain nameless) may have said something about a "cruise butt". Well, Barry, we'll just have to walk that off, won't we?

I wanted to take a picture of my buff arms but that will have to wait for a time when it is warm enough to be wearing less clothing.

Wednesday, 1 February 2017

New wheel technology

There are a lots of different types of mobility devices out there and most people don't get to see many of them. I had a chance to see a lot of them a couple of weekends ago and thought I would write about some of them. This is a piece I have written in hopes of having it published in the SCI Ontario magazine Outspoken!

The Abilities Expo made its Canadian debut in Mississauga January 20-22 and this country mouse made the two hour drive to the big city to attend. The weekend promised everything from wheelchair dance demos and nutrition workshops to new products for all types of disabilities and give-it-a-try sports demonstrations. From an SCI perspective I would have called it the “mobility” show - that was my focus. I had many opportunities to witness and even try for myself new ways of getting around, and not just on flat land.  

Living in rural Ontario provides many challenges but the biggest one for me so far has been how to get around on my farm and get back on the hiking & biking trails. My TiLITE chair only gets me so far before uneven surfaces bog me down. Attending the Abilities Expo helped shed some light on what else is out there.

Because I currently live in a two storey century old farmhouse, the first thing that caught my eye was what I would call a “human dolly”. It’s actual name is the Evacuscape Chair. The primary function of this device is to get a person with a physical disability down the stairs in case of an emergency. Just transfer from your chair to the seat and your able bodied companion will bump you down the stairs to safety. Every cruise ship, hospital and school with elevators should have these. Perhaps an increased institutional demand would bring the cost down - Evacuscape Chairs start at $1,295.

The biggest buzz when I was there was generated by the only mobility device using Segway technology licenced for medical purposes in Canada. The Genny Mobility uses gyroscopic self-balancing technology, where leaning forward and backward and using the steering handle causes motion. I had the chance to use it on the showroom floor and found it quite easy to learn. I was curious to know how well it would handle on my farm and the salesperson showed me a video of woman who uses it on her farm to herd sheep! I can see this being a great way to get around my 10 acres, but starting at $29,000, it costs more than my Mazda5!

Although they were not set up at the Expo, I ran into the guys from SoftWheel. These wheels were developed in Israel for use with wheelchairs, bikes and automobiles. They use an in-wheel suspension system that absorbs more impact than traditional wheels or in-frame shock systems. Because these wheels are compatible with any wheelchair system I easily swapped out my regular wheels for theirs with a quick tilt of my chair and I was able to use them  in the comfort of my own seat. There was no discernable difference until I got outside on uneven ground. I tried bumping down the curb a couple of times and the experience was amazing. I could barely feel the bump! I imagine that the reduction in impact and vibration over the course of the day would really help those (like me) who suffer from back pain. SoftWheel hopes to have their technology for sale in major mobility outlets in Canada soon.

The final piece of mobility technology that really caught my eye was the chair that Jeff Adams (Canadian Paralympian) was sitting in. ICON Everyday Wheelchair is fully adjustable in seat position, back tilt and support, footrest height, dump, giving the user the ability to adjust their chair as they grow and become more comfortable as a user. They also had the ICON Explore on demonstration - it is an electric powered, three-wheeled, fat-tire mountain bike wheelchair of awesomeness! Watch this video to get a taste of it. This is the set of wheels that will get you back outside, in the park on trails or in the backcountry.

Hats off to the Abilities Expo for bringing together a wide range of mobility devices under one roof. Dealers that we usually go to tend to carry only one brand or a certain large ticket device, so it was lovely to see such a large variety in one place and then be able to try them out. With so many ingenious ways to get around on wheels I would buy them all (if only I could afford to) but in the end I would need to build a new garage to house them all!

Tuesday, 24 January 2017

A snowbird at 43

I just came in from being outside. It's Sunday afternoon, about 6 degrees above zero and there was actually some blue sky. It feels like spring. We have been home since Thursday night (late) and that is the first blue sky I have seen since we left Florida - and I gather that January has been grey the whole time we have been away. Those that I have spoken to since returning have asked what was the best part of our trip - my answer - the sun. It was just so glorious. It warmed my body and healed my soul. If you have been south in winter then you know what I mean.

I have been trying to organize my thoughts for this post - there is a lot to share (and remind myself about) so I  apologize in advance for it's length. Accessibility on board, no plans for Mexico, Canada vs. US taxis, holidays in general, everyone has a story and of course, the food. Here we go.

I am feeling a thousand times better than I did in December. It must have been a virus - I can't figure it out otherwise. The turn came at the right time, that is for sure. I am not sure what I would have done if I had continued to feel like that while on holiday. Where in December I was feeling 4/5 like crap, I have flipped it and have four good days out of every five. Still have the occasional bit of nerve pain in my feet and the ever present "line pain", but I no longer want to die. I still napped a lot, hoping I would get to a late night show - but did you know that late means starting at 10:45pm?? Napping helped me get through dinner - not enough for a show. One night Theo put the three of us to bed and went off to a show on his own :)

We sailed on Royal Caribbean's Independence of the Seas. It's a huge ship with more than 4000 people on board and 1500 staff. We had a fabulous stateroom. Our travel agent did a fabulous job finding it - a Junior Suite with bunk beds, a king bed, accessible bathroom (with roll in shower), two closets, couch, roll-under vanity and roll out balcony with two chaise lounges and a table and chairs. A lot of thought went into the accessibility features of the room including the location of light switches (beside the bed), a mini ramp that covered the track for the sliding door and the lower safe in the closet. Some things were odd though, like the grab bar on the wall behind the fold down shower bench and the pull down bar in the closet that folds back up in order to close the door (and causes all your hangers to fall). The thing that they have to change though is the carpet. And this goes for all hotel rooms too - accessible rooms SHOULD NOT HAVE CARPET. Sorry for yelling.

That would actually be my biggest complaint about the ship - the carpet. It is everywhere. In the elevators, down the hallways, in the rooms, theaters, casino, arcade, dining rooms, everywhere! It's a big ship (14 decks) with a lot of travelling necessary - and the carpet just makes it all quite exhausting. I was happy to have someone to push me over that dastardly carpet when I was tired.
I did NOT swim here - this is the surfing pool, and that is Oliver learning to surf on his 11th birthday!

I did get out of my chair and into the pool - although it took some work to make it happen. It was not obvious to me where the lift was so I went to the Guest Services to ask. They didn't even know that they had a lift (so they made a call) and then directed me to the pool attendants at the towel exchange desk. As I left I heard one staff say to another that in 11 years she had not known they had one. I went to the towel desk and asked about using the lift to get into the pool...and they had to make a call. Finally, someone came to show me where it was - we went together (weaving through all the loungers full of people). I had not seen this lift earlier because it looked nothing like a lift. Anyway, they set it up, I transferred to the seat and they throw the switch to "up" (me and the seat had to go up and over a lip and then down into the pool).

What is slower than molasses in January? How about dial up? Oliver getting ready for bed? Add this pool lift to that list. Holy cow. Nothing like having 1000 sets of eyes on you when all you want to do is sink under the water and pretend to be like everyone else. Out of my chair. It appeared to us that the lift had not been used for a long time, as was obvious from all the phone calls, and the hydraulic fluid was not topped up. So as I sat and waited for it to move (was it even moving?) I wondered if I would do this again. Of course I needed to in order to get out - but after that? And what about the hot tub lift? That was even higher and I would have to kick out all the kids!

Well, I did attempt to use the lift again. I was hot, there were not as many people around the pool and I wanted to swim. I got back on that lift only to discover that it was actually broken - the part that held the seat on had sheared off - not a quick fix. I wish we had noticed before I almost fell off and bruised my back. So the pool attendant went and got his rubber boots on. He and Theo lifted me over the lip and then once seated on the edge of the water Theo more or less dropped me into the pool. Still a spectacle.

Which brings me to a feeling. Being on this trip was one of the rare times that I have been away from my Huron County/Parkwood habitat. I felt exposed and invisible at the same time. No one on that ship knew my story - almost everywhere I have been in the past 18 months, someone (if not many) knew why I was using a wheelchair. It was a weird feeling. I noticed that I behaved differently and I am not really sure why. I didn't make eye contact like I usually do. In the dining room we had a wonderful table for four right beside the window. It meant we had to weave through some tables and had to have other guests pull in their chairs in order for me to get by. Initially, I felt badly about it - that I was causing people to be inconvenienced. But then I thought - no, I am going to keep my beautiful table - so sorry that you will have to squish into your table for a moment while I wheel past in my chair that I will use for the rest of my life.
Mango Margarita. Yum. 

We did get off the ship for a day - in Cozumel. We had no plan, had decided just to wing it. In the planning stages we had been offered an accessible taxi and a beach wheelchair for the day for $95pp. That was going to be $400 for a day and that didn't include snorkeling, lunch or drinks. On the advice of friends we decided to turn that down and just see what we could find. Well, we did it, jumped (with a messy transfer (sans slider board)) into a regular taxi who took us to a resort where, for $15 each we could snorkel (with a drink, tequila tasting and a 15 min massage). It was accessible only in that there were ramps for getting to the coral beach but not into the water. We called on the assistance of strangers in order to get me in and out of the water - people like to help. Snorkeling made this trip for me and might be my new thing. It brings my ability (swimming) and my love of nature together. Guess we'll be moving to the Bahamas after all.
Theo and Ella are way out there with their snorkels on. Water was warm and lots of fish to see. 

Getting on and off the ship was way easier than I ever thought it would be. I got to jump all sorts of line ups - at customs, boarding the plane, in the ship terminal and the best one was getting off the ship the last day. We went down at our assigned time to the place where people with accessibility needs were to go. They asked me if I needed help and I said that it depended on what the ramps were like. One of the staff (actually a restaurant staffer) took my chair (and me) and said "let's see what we can do" and off we went with him shouting ahead "excuse us, wheelchair coming through". We got by everyone in line waiting to get off the ship and all the way into the terminal. Normally I am not happy when someone starts pushing me and my chair...he was awesome.

Ship to airport service had to be a taxi for us. The bus shuttle service is not one that I can easily get on and off. Taxi service in Florida and Toronto can not be compared. We were able to get an accessible taxi without waiting any longer than any other guest. It only cost $15 for about a 15 minute metered ride - and that is with me being able to stay in my chair. Pearson is another story altogether. We needed a ride from Terminal 1 to the Fairfield Marriot where we had left our car...a distance of 1.1km. Again, the hotel shuttle was not an option so we needed a taxi. We got in line, and I let the attendant know that we needed an accessible taxi and he said "Yeah, get in line". So we did. When we got to the head of the line I repeated my request to the other attendant who then radioed for one. He then informed me that there were no wheelchair taxis in the compound. In all of Pearson International Airport - the largest airport in Canada - there were no wheelchair accessible taxis available? Come on. Did I mention that we didn't even have to wait in Florida? Yeah, I did. So we had to take a van that I had to transfer into the front seat...and the cost? Guess...

$30. Seriously? Pearson Airport taxi service - get your shit together.

Air Canada was ready for me, which was great, but next time I'll request seats not at the back of the plane. I mean really? Why so far back? It already is a longer time sitting on the plane (first on, last off) and then I have to wait for them to bring the aisle chair all the way to the back. When we landed in Toronto the cleaners were on the plane before the aisle chair came back. It was a full hour after the plane was at the gate before we were off. I am not sure that that is an acceptable time frame. It sure made going home all in one day quite tiring.

You see, we took three days to get to the ship. I wanted to build in some contingency time - to account for the likelihood of bad weather. So leaving the ship on Thursday morning, getting to the airport, sitting and waiting, flying (sitting and waiting), piling into a taxi to get to our car (sitting and waiting for CAA to boost our dead battery) and then driving home meant that my legs had not moved from a seated position for almost 15 hours. This was not a good thing. I have learned my lesson. My lower legs, ankles and feet  were so swollen full of fluid they were turgid. If you were to sit for 15 hours you could at least wiggle your toes and flex your ankles - these small muscle contractions would help with circulation. I did nothing other than sit with my feet up for an hour at the airport. Next time I will figure out ways to move my legs - I didn't realize how bad it was going to be. I slept that night with my legs elevated and even so it was a full 24 hours before my feet looked normal.

So how does this novel end? I am glad we went. I am grateful we were able to afford it. I need to go back. I want to be a snowbird.

I forgot to talk about the food. It was amazing. This was a no-egg dessert that the kitchen made just for my guys. 

Friday, 13 January 2017

Pasty Canadians

First leg of our journey complete. Air Canada was wonderful; a huge thank you to the Underwood family for getting us here. We were at the gate just in time to be summoned and loaded first on the plane. They did okay when we got to Fort Lauderdale too, although I think the company responsible for that kind of thing had at least eight people helping out. Too many hands!

It's weird getting off the plane and not having to go through customs; I guess we did that at Pearson - we're still wrapping our heads around it. We left the baggage claim to go find a taxi and I am sure we passed by the area where the shooting was last week. Lots of demolition and a fork lift of new drywall going in at 7pm. I'm so sad for all the families involved.  Our taxi driver in Toronto had a lot to say about it; he thought that all guns should be destroyed and the world would be a better place. If only it were that easy.

We walked out to a wosh of humidity  (23 degrees). It didn't take long to find an accessible taxi, no longer than if we had wanted a regular one. I chuckle when my chair gets all strapped and cranked into the back of the van. Because that's it - just my chair gets strapped in, not me! I don't wear a seatbelt in my chair so I'm not actually attached to the van! The driver in Fort Lauderdale was pretty quiet. But boy was he fast! We asked him to come back tomorrow and take us to the ship. Transport problem solved.

We laughed on the plane. For a moment we thought we were having a "no drive" week. To us, a no drive day means that we don't drive either of our cars. We pat ourselves on the back when it happens  (usually only because our road is closed in winter) as it is our contribution to reducing the global carbon footprint. We realized what a joke it was to think we'd be reducing! Look at the tens of thousands of pounds of carbon our flight and cruise ship will be spewing into the air!

The hotel we are staying at tonight has an outdoor pool  (of course, it's Florida) and it has a lift! So guess what this pasty white Canadian girl is going to do tomorrow? Yup, swim. The kids were in tonight and claimed that it was I won't last long. But I'm going in. We lifted the cover to see how it worked and it seemed to not be plugged in. Not seeing an obvious answer we went to the front desk to ask. The response: No joke, "what lift"? The maintenance man knew what I was talking about but he didn't have a clue either (although he took a serious look at it). He said that the Chief Engineer would be in first thing and would have it working for me. "What time would you like to swim?" So nice, these Americans.

This will likely be it for posting until we get home, we opted not to pay $12 per day for Internet. And I apologize for my lack of proof reading; this was all done on my phone!

Anchors away  (as they say). We're set and I dare say that I think I am feeling better. Even after a long day of travel I am not a basket case and it's 10pm!