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Words by Julie - Living Life With Paralysis

Worth it 4

I have had a wicked day of neuropathic pain. It started in my feet this morning when I woke up. Usually, it creeps up on me as the day progresses, but not today. Right from the get go. I did my best to ignore it, worked hard at therapy, but by mid-day I was done. I am going to try to distract myself by writing an update. I realize it has been a while.

For now, the Hi-Hoe is gone, awaiting yet another hole digging on our ten acres (septic, geothermal, finishing around the foundation). The foundation of the house looks like this:

Foundation done!

What you see is hard packed and ready for the plumbing, in-floor heat and electrical. It looks big, but when you put yourself inside, it really isn’t. The garage is the big square top left. If you look carefully you can see the opening for the garage door. Top right is our bedroom, bathroom, closet and office. Last night I was able to get sort of close, and when I saw that all four of those spaces would be crammed in there I didn’t think BIG at all! No basement, no second floor.

Below those two spaces are the mudroom/entry way and fireplace. Further down the photo is the living room facing the dining room, kitchen and pantry. Then there is “Theo’s” bathroom, the utility room, kid’s bathroom and bedrooms. There is a little “bonus” room bottom left – the kids have claimed it for now…

The right hand side of the house (looking at the photo) faces south, looking out at white pines, one yet to grow up tulip tree and backed by the 100+ year old maples. I really look forward to being able to see out my kitchen windows again!

 

On Sunday I came home from five days in Edmonton. I travelled as a part of a team from Parkwood Institute, me, giving the patient perspective on some research they are doing. A research volunteer. The conference was all about FES (functional electrical stimulus) which is the machine that I use at home and at Parkwood for therapy. It provides electrical stimulation to my muscles, allowing them to do the work of peddling a bike:

Riding with my Parkwood girls!

As a person with an SCI who uses FES (and activity based therapy) I was asked to speak about how I used FES in my therapy. This picture shows me riding with three other Parkwood outpatients, and we don’t just ride, we talk. The social-emotional therapy that happens every Thursday afternoon is probably the best part of my week. We talk about experiences, solutions, equipment, relationships, travel, hopes and dreams. I am reminded that I am not alone.

 

My Mom travelled with me to Edmonton, to keep me company, lend a hand, and spend some time with just me! It wasn’t until the last day that we had some nice weather and got to see some of Edmonton (other than the University of Alberta). Still working on my ability to take one-handed selfies. 

I learned a tonne of new info about FES, activity based therapy (which I also learned is a real thing – which we are doing – Mark is not just out to get me) and that I could be tracking my activities and my progress. My new friend (who is head of research at Lyndhurst in Toronto) is doing just that – and she graphs her results! The scientific part of my brain just loves it! But it was funny because quite a bit of the science/research methods and physiology terminology was way over my head and left me spinning trying to keep up.

Many of the FES users that were at the conference do so daily, at the minimum every other day. I am lucky if I get three rides a week! All along I have know the benefits of the muscle activity (decreased nerve pain, improved circulation & digestion, less skin issues & urinary infections and more muscle mass), but those that do so religiously have a measurable (as in, with an actual measuring tape) increases in the muscle mass of their legs. Measurable! One guy talked about how he sometimes rides  for three hours!

I really need to adjust my schedule.

4 comments

  • Joan Hukezalie says:

    Your home is really coming along!
    It sounds like you are still learning a lot of new information . Thank you for sharing. It is all very interesting.

  • Susan Young says:

    I love how you’ve ended this post with the beginnings of a new goal for yourself: more muscle mass. Love it!

  • Doris Haw says:

    Thanks Julie, I really enjoy reading about how you are moving forward and all the things that you have accomplished. Keep the Positive and you are going to be successful. Your house will be wonderful.

  • Gary Clark says:

    So electric pulses are making your leg muscles do the work? Is it measurable then for how much pressure you are applying to the petals? Now how is that for your scientific brain to work on?

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