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Posted by on Aug 25, 2018 in CRPS / RSD | 0 comments

Physica-Lego therapy? (25.08.2018)

Physica-Lego therapy? (25.08.2018)

Over the past 2.5 years I’ve spent a lot of time with my physical therapist*, since being struck with a rare neuroinflammatory disease. An hour, 3 times a week, for more than a year. Then twice a week, for an hour, since then.

We’ve developed a mutual trust, which goes far beyond my treatment, despite a significant age gap. He’s about to get married; my husband & I have been on our honeymoon for 25 years now.

He’s chatted with my husband on many occasions; I’ve talked with his fiancée several times. They even came to my milestone birthday party, last year, before they got engaged. He likes to cook, and I like to bake, so we’ve often exchanged recipes by email.

My physiotherapist and I (and our partners) love travel, exploring the world, so we’ve shared stories of our adventures. He’s lived in Canada, Egypt, England, and Italy, so has some great tales – and comparisons.

And I’ve had a front-row seat to so many exciting steps in his life during this time; meeting “the one”, planning the proposal, making wedding plans, searching for – and buying – their first home. I even provided some last-minute (& asked-for) home-buying advice by email – that they were able to use to negotiate a better price!

He’s also gotten to know me fairly well. As a former competitive athlete & military officer, I don’t often back down from a challenge. I’ll put up with a lot of short-term effort – even pain – for potential long-term benefit(s). And I’m often a bit offbeat, when it comes to adapting to life with an extremely painful & often debilitating disease.

I push the limits of my disease, sometimes – in his view – too far. Or too quickly. But he – usually! – refrains from saying: “I told you so”.

And my “let’s try” attitude gives him the freedom to suggest therapies that wouldn’t usually be proposed for a CRPS patient. One example was a dynamic splint, that would use elastics to pull on my finger & wrist joints.

a dynamic splint, with elastics that pull on each of the fingers and the wrist

Photo: Sandra Woods

The concept was for the splint to apply constant traction to these joints, in the hopes of preventing a common long-term result of CRPS; permanent bone damage. But – big but – it would cause more pain in the short term; while I’d be wearing it.

We went ahead with the splint, after I finally convinced my initial – and extremely disinterested – specialist to write a prescription for it. It hurts, but I’ve been wearing it regularly for almost 2 years.

And my newer team of – absolutely fantastic – specialists has been stunned by how much better my joints are, than other patients with this disease.

My physical therapist has even helped me (try to!) figure out a way to paddle a canoe, despite pain & range of motion issues with my right (dominant) hand and wrist. He attached resistance bands to my paddle, to simulate the drag/pull of the water, while I knelt on a treatment bed and fake-canoed against the resistance bands. It must’ve looked absolutely ridiculous, but he helped me “find a way”.

So by this point, he knows that I’m game to try just about anything – other than pseudoscience – that might improve the multiple symptoms of CRPS and/or increase my range of motion.

When I mentioned to him, yesterday, that I’d borrowed some Lego from a friend – he had an off-the-wall idea. (The Lego was for a fun addition to a training event, at work. A friend had agreed to perma-lend me a Lego starter set; she’d received it as a gag/joke birthday gift, and didn’t want it. She didn’t want to insult the gifter by giving it away, so lending it permanently to a mutual friend (me) was a perfect solution!)

What was my physiotherapist’s off-the-wall idea? He suggested that I play with the borrowed Lego myself; that building things with it would likely use different finger & wrist movements than the ones I do as part of my therapy. That playing with Lego could be like a bizarre type of physical or occupational therapy.

So guess what I did this evening, instead of reading, while watching TV with my husband? You guessed it! I made a few Lego creations, based on the idea book that came with the Lego set.

Lego first attempts 20180826

Photo: Sandra Woods


It was fun, but I have to admit that I went a bit overboard; my finger and wrist joints are hurting a lot more than they usually do, so I probably should’ve stopped after the first couple of designs.

That said, my favorite creations are the little alligator and the yellow Jeep-like car. The wheels on the car turn, so you can play with it as a toy car ,-)


Added 17.08.2018, with my physical therapist’s permission; his name & qualifications.

This is not a commercial website, and this is not an advertisement; I’m sharing information the same way I post links to articles in medical & treatment journals!

Cherif Rafla, via LinkedIn

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