404 and counting

The impacts of a spinal cord injury depend on where the injury occurs. For me, (T4) blood pressure regulation has been challenging. Back in Victoria Hospital my nurses (lovingly) tried to get me up and into the shower but instead I ended up back in bed with my feet elevated - it really was funny because they tried so hard to prevent me from blacking out. Alas, no shower! As soon as I had my feet up I felt so much better. Those early days were hard, even just sitting up for short periods of time was difficult.

Now, my blood pressure is better. At my family Dr on Friday the nurse said my bp was "on the low side" - I corrected her and said that 101/65 was actually quite good! Now I can sit for longer and with the right help, I can "stand". There are a few different ways that I have been able to be completely vertical. The first was the tilt table where I was gradually (4 minutes at a time) brought to almost 90 degrees. From there I graduated to the standing frame which I rocked the first time, but failed miserably from then on. After that I was promoted to the Lokomat and I wanted to keep walking on that forever because it felt so good, even when I was finished. I have also been standing in the pool and last week we were in the Wingham. The wall in the middle of the pool with the bar along the top was the safest and best way for me to actually do the work of pulling myself into a standing position. It felt great.

On Thursday I graduated yet again. Ekso bionics makes the exoskeleton that Parkwood uses for SCI rehabilitation, and I got to walk with it! It is not a quick piece of equipment to get into, and it took three therapists to supervise me and run the machine. So even if I tried, it's not something that I could throw in the back of the Element and bring home. Learning to use it was pretty straight forward for me - I got to call upon my ski technique (nose over toes) to weight transfer which allows the opposite leg to swing through to take another step. It was hard, but I could feel it working. I was up for 26 minutes, walking for 14 and took a total of 404 steps. And it just about killed me. Of all the therapy I have done this was the hardest. All the while I was walking I was thinking about my blood pressure and how long I could keep going. I knew it was taking a toll on my cardiovascular system. When I got out of the ekso I wheeled over to the plinth, hauled myself up on to it and lay with my feet up over a wedge for half an hour while Theo went to get lunch. I felt like I had run a marathon.

As you watch the video, have a look at my face. Although I look totally bored, that is my face of concentration. I hope to be able to do it all again this week!

One month home

This afternoon I was in bed for an hour, hoping for sleep but grateful just to rest. It was during this time that I began to realize that this is where my ideas for writing come from. I guess I have not been resting much this month. Well, I knew this already. You see at Parkwood, when I had no one to talk to, I would write. Here at home there is always someone to talk to or something to do therefore much less writing is getting done. The other reason I wrote was to process, here I have Theo to help me process, which is nice because he talks back to me. So anyway, given some time to think this afternoon, I thought I should write a bit tonight - an update of sorts. After dinner.

Dinner and a round of spoons make me lose my flow. Let me see if I can get it back.

Since I have been home (one month) I am a little bit stronger, have landed on the floor only once and I have only one scabbed knuckle. I do not have the core strength to take casseroles out of the oven, but I can turn off the oven, open the door and pull out the rack so it won't keep cooking. My morning routine is becoming a little more routine and I have (most days) been on time to my morning appointments (10 am in Wingham). I am still fighting with E. coli in my urinary tract. My awful tasting tree juice (thanks Erin) may be working as I feel way better today then I did on the weekend. Two earlier rounds of antibiotics did not really knock it back - so my Dr agreed I should hold off on the third round seeing as I was less "symptomatic" since taking the juniper drops.

Physio is going well. Bill regularly comments on improvements in my core stability and Elaine says she sees my balance has too. I have started in the pool again doing a bit of strength, stretching and cardio in each session with Tammy. Today we swam in Wingham to try out the temperature and I lasted for an hour before I started to really feel the cold. It's hard to balance the stationary time with the moving (and therefore keeping warm) time. It's hard to decide when to say "I'm cold" because I want so badly to stay in and swim. My body's ability to maintain homeostasis is so out of wack, I don't even get goosebumps. Last week at Parkwood I got all measured up for the Ekso, so this week I will be walking. Check out Able Bionics who gave a pitch to Dragon's Den and got all five dragons to buy in! They are doing work that I may be able to tap into in the future. For now I will try and video my walking and post something here.

My endurance for being out of the house is pretty low, and my bladder only has a four hour window. I have not been very successful doing catheters in other places so we try to not stray too far. So I have had friends and family doing shopping and picking up things for me and the kids. Winter boots always seem to be a challenge and seeing as I have not been able to see what is in the stash upstairs, we just bought new. I know, Theo could look, but I think that room where we keep "stuff" has become so overwhelming, he does not even want to go in there. That is where online shopping comes in. I have lots of friends (um, Selena) who do all their shopping online. I have, up until now, not really been that keen on it. I like to feel the fabric in my hands, and try it on, before I buy it. Everything is different now, so why not? And man it is so easy! Doesn't help that it's "Black Friday" and every website had a sale. Credit cards are so dangerous. So, we got new sheets for the big bed, the kids and I have new boots (thanks Nancy) and we also have some new clothes on the way. When did I become such a consumer? In my mind some of the stuff is going back, I just need to see what works...

Last week was a week of firsts when it comes to cars and driving. I did my "driving assessment" where they tested my cognitive abilities (took about 40 minutes) and then said, "okay now we will go drive". Here I was thinking that they would give me some instruction using the model of the hand controls in the office, but no, we just got in the car. The instructor said "push for breaks and pull to accelerate, if you have trouble remembering that just think "stop" [here she holds her arm out straight palm facing forward] and push your hand forward." So I drove around the Parkwood parking lots, then across to Victoria then out into the streets of London (there's a song in there). It was fine, I was very cautious, but I am sure I will get used to the hand controls with practice - which I won't be able to do for 6 to 8 weeks because ServiceOntario takes that long to process my temporary driver's licence. Very frustrating.

The other first was buying a car. A new car. We have never done that before, quite odd getting to pick colours and features, we are so used to getting whatever came with the car that we could afford. So we went to Stratford on Saturday and bought a Mazda 5. It is a 6-seater station wagon with sliding doors. We will get it modified to have hand controls and will take out one of the seats in the second row so that I can pull my chair in behind the driver's seat. The Mazda 5 is the car of choice of all the people I have met in wheelchairs. Both the pharmacist and the dietitian at Parkwood drive it and I have even seen it set up so that the robotic arm is not needed to bring the chair in. I have sold my small but mighty Rio5, which makes me sad, no more stick shift for me.

It snowed here on Saturday. Wheelchairs were designed for city living. So just like they are not meant for farms, they are not meant for snow. We went to the lighting of the lights in Blyth (where I had the honour of flicking the switch) and I got stuck on the sidewalk. I was all "I'm fine! I can do it!" but it was hard going, and I for sure would have been stuck were it not for my helpful kids and husband. Sunday seemed nice, but I got outside just to do the ramp four or five times before going back inside, the driveway was not an option. How am I going to get out in the snow this winter?

So lots is going on. Each week is packed. Doing therapy now takes way more time because I can't just roll down the hall and go down the elevator to the second floor. I have to get out of the house, transfer into a car, the driver has to figure out how to get my chair in, drive and do it in reverse. Nothing is quick and it is all quite exhausting. Some days are okay and some days are awful. Theo says I need to write more when the awful days happen. Today's awful thing is my feet. Although I don't have normal feeling in my feet - I can feel them because they feel like they are on fire. You know that feeling you have in your feet or hands when they have been really cold, and the feeling is just coming back? That is how I have felt all day. It seems to be a new type of nerve pain that I have, it has not been this bad for a while. Maybe it means something good? Here's hoping it does.

Love Story

Having been home for more than two weeks now I have heard Love Story on the piano (well the first part, anyway) a number of times that can't be counted. I have also said "Go get ready for bed" a lot.  I have not been out and about very much, but I have heard "You look great! How are you?" many times. Most  people that I see say this to me, and I have not quite figured out how to respond. What can I say? I guess I look good, for someone who was hit by a car, had a broken nose, two broken teeth and her forehead and chin split open. But those were just the things that were visible. I know that everyone knows that there was more to my injuries than that. And I know "how are you" is just what we say to be polite. But I still don't know what to say in return. I guess I'll figure it out eventually.

So how am I? Tired. I have gone from eating three meals a day in my bed to being up to eat with my family for every meal. I have been trying to improve my endurance (just being up out of bed) but some days I take it too far. Pacing is a word that keeps getting thrown at me. My pace used to be all go, all the time. Now, my head is constantly going, but my body can't keep up. I filled a whole page in my notebook today of things to do. I hung laundry on the line and rolled to the end of the driveway and back with my new FreeWheel attached to my chair. It helps lift my front casters off the ground, which makes wheeling easier, but it still is hard going on rough terrain.

The new hangout place in the house seems to be our bed. Now that we have moved all the books out of our room (thanks Dad) it feels more relaxed for me. Sometimes I work on the computer and do paperwork, or I rest and the kids read or draw. We have coloured together (thanks Steph), thumb-wrestled (Oliver's fav) and listened to music. It's nice to just hang out, but we also played catch outside today - fun for the kids and a bit of a core workout for me. I helped Ella make an apple crisp. Sounds simple, right? Seated at the table to peel, core and slice, but I have to press my arms against the table while I work just to keep my body upright. Tiring.

I started physiotherapy last week, it felt good to get back into working my body. Working with Bill and Mark will be great - using some of those new found muscles in different ways, feeling so much stronger than I did a month ago. I can now sit up on the edge of the PT bed holding myself up with my hands on my knees and pull in my lower back, without assistance. I also started doing some upper body exercises on my own today, just me, a stretchy band and the door handle. Now of course, my arms are super tired.

So, slowly, we are adjusting. The kids are helpful to me, and towards the running of the house. Lifting my legs up on to the bed, fetching things I can't get or reach and even helping me get dressed. I can do most things on my own, but it takes twice the time and energy as it does to get help. We would never get anywhere, let alone on time, if I didn't have help. Theo does everything for me (even more than the nurses did - sorry Lisa) and I am in awe of his compassion. I wonder how long it will be before he says do it yourself. Our OT said caregivers can run on adrenaline for as much as six months. I hope he kicks me in the butt before then or he will waste away to nothing. He says "you're still Julie", and that is what keeps him going. I guess that is our love story.