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Words by Julie - Living Life With Paralysis

404 and counting 6

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!

6 comments

  • So exciting, Julie! You are working so hard. Couldn't see the video but the pic of you standing straight and tall and strong is just wonderful. The equipment designed to work your body and push you to the next step is incredible to me. Medical science is truly amazing. Your days sound so busy. It's really great to hear from you about how the past month at home has been. Thinking of you often and rooting hard. It does sound like training for a marathon! Sending love from the Stevenson family.

  • Brooke Ohm says:

    Your strength and determination are so motivating! It is wonderful to see you standing up right! Keep on doing what you're doing because you're rocking it!

  • Tammy Graf says:

    That's wonderful and exciting all around! You are an inspiration!

  • Tammy Graf says:

    That's wonderful and exciting all around! You are an inspiration!

  • T.L. Hipfner says:

    Thank you for sharing this! I'm so happy to see you looking so strong and facing everything with such a positive attitude 🙂 Lots of prayers and cheering from the Hipfner family!

  • Ernest Dow says:

    Stride on, O courageous and determined one!
    Looks like a clever rig… Are you SURE there's not a switch somewhere you can flip that would let you just sit back and relax while the machine runs the marathon FOR you? 😉
    (I know — 'No pain, no gain…')

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