Miranda’s gear, circa 2014

Posted by Karen - November 30th, 2014

I’ve said it before – people with fibrodysplasia ossificans progressiva can do many of the things “typical” people do, but just maybe a bit differently. Sometimes that means using various tools, implements or special types of furniture. Recently we’ve encountered some good innovations in this regard, so for today’s post, I thought “why not round up some of the things my daughter Miranda uses?” So, starting from maybe oldest to most recent, here are some useful bits and pieces we’ve gathered over the years…

From the time Miranda was 3 years old, her arms have been quite restricted by FOP bone. This poses all kinds of problems. One issue that we noticed right away was that for Miranda to be able to feed herself, she needs to be seated with her thighs RIGHT up against the bottom of the table. Most chairs don’t seat you that way, and she was, at age 3, too big for a highchair, so we had to do some looking around. Fortunately, an occupational therapist put us on to the “Tripp Trapp” chair. This is sort of half way between a chair and a stool, and the height can be adjusted. This chair has worked pretty well for Miranda, and we’ve had it for 5 or 6 years now. M can still use this at age 9.

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On a related note, reachers are useful for Miranda to grab things you’d normally reach over your head for, or across a table or on the floor. Here are a couple we’ve come across; one is a traditional “grabber”, while the other has a lever with a magnetic head on it – good for flicking light switches, hooking on to things or picking up small metallic objects. Ooh, and it telescopes!! Very cool. The grabber is available just about anywhere, but the other one we had to order over the internet and is called the “Tele-Stik”.

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Also useful for people with limited arm reach is the bidet, see below, complete with remote control operator. While we did get this for Miranda, I’m going to comment here that I love the fact that this item features a HEATED toilet seat, which is awesome for cold winter nights… We got this guy maybe 5 years ago or so.

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(NOTE – please no cracks about our incredibly outdated bathroom decor! I am well aware that we need to do some serious renovations in there.)

That good ole’ arm restriction problem creates difficulties in school, as well. Luckily, in British Columbia (Canada) where we live, our school system is great about getting the right gear for special needs kids, and they obtained a very good desk for Miranda. The height is adjustable, and the table top can be tilted. Miranda got this at the beginning of Grade 2, and it’s followed her to each new home room class since then. Sorry, I can’t remember which company makes this desk, but if you really want to know, reply to this post and I’ll track down the name of it for you.

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Now, going in a slightly different direction, I will show you Miranda’s bike. She needed a special bike because (a) she can’t reach the handle bars on a regular one, and (b) she needed something more stable and safe. And so, we got the Freedom Concepts “Discovery” tricycle a few years ago. This was a really nice thing, very adjustable and customizable, and it gave Miranda some recreational opportunities. Sadly, with her right knee restriction – she can only bend partially, circa flare-up in the fall of 2013 – my girl may not get much more use out of this trike. We still need to try adjusting the seat (yes, yes, we’ve left it for over a year now, I realize), but I suspect Miranda’s knee won’t bend enough to keep using it. Which is too bad, because but for the knee thing, she probably could have kept riding for a couple of more years.

Miranda, age 6, with her fab Freedom Concepts "Discovery" bike.

Miranda, age 6, with her fab Freedom Concepts “Discovery” bike. Later on, we took off the foot holders and replaced them with regular pedals.

This brings us to more recent things… Maybe a year ago or so, we bought a memory foam mattress topper for Miranda’s bed. This is a really squishy, soft topper which sort of molds to the shape of a person’s body. This is good for coping with bony FOP protrusions, especially on the torso. The topper, which is blue in the photo below, sits underneath a cover and just below the fitted sheet.

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Finally, clothing. For day to day wear, Miranda mostly has stretchy T-shirts and casual pants, all of which work fine without alteration. But as I’ve bemoaned before, it’s really, REALLY hard to get jackets on Miranda’s arms. To get around this, I recently got a zipper put into Miranda’s winter parka. I know I posted about this recently, but hey, why not again? I am still totally tickled with how well this works.

..and here it is unzipped.

…here it is unzipped

Or, you can forget about arms altogether! Recently I discovered a local Vancouver-based company which makes beautiful rain ponchos. I found this at a local Christmas craft fair, and snapped it up right away. Here is Miranda wearing her new “Moojoes” poncho, which I think is gorgeous.

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I guess you can’t see it from this picture, but this poncho has a hood and some reflective strips for good visibility in the dark. Also, there is velcro on the sides so you can make sleeves of a sort if you like. Considering how much rain we get in Vancouver, I think this will turn out to ┬áhave been a great find.

There you have it, useful stuff we’ve come across. If you or your family member has FOP, I’d love to know of useful products you’ve found… Please reply to this post with a comment! Thanks.

5 Responses to “Miranda’s gear, circa 2014”

  1. Lori Mahler says:

    Karen … one of the things that Nick uses as his arms are fused at the elbow is a ” Bamboo Back Scratcher” we sanded it so as not to make it tooo scratchy and he uses it to pull things his way at tables and to pull up covers when lying down .. works great .. we get them at the Dollar Tree ( $ 1) so we buy several. He also uses them in the car to turn the radio stations , volume cd , put the window up and down and lock the car door :-)

  2. Julie Collins says:

    Hi Karen thanks for sharing all these great tips. Ollie also uses a sponge with a long handle for washing under his armpits. We’ve had all ollies jackets blazers and many collared shirts adjusted with a zip 4/5th way down the back and Velcro or books and eyes on the collar part. He loves it because everything fits nicely now instead of being enormous. Ollie has a dressing stick with a shoe horn one end and a perpendicular small cross stick/hook the other end and it folds in half for easy packing in a bag to help getting t shirts so Ks shoes etc off.

  3. Lara says:

    Karen, not sure if they can do it after market so to speak, but Freedom can make a bike with a platform on one side and a pedal on the other. Might be worth investigating what it would cost for that modification (if they will do it). We had looked into that for J but he can no longer do any activity – even 5 minutes seems to hurt him so no bike, not worth it.

  4. CooDovey says:

    Just curious, what is wrong with one of her eyes?

  5. Fabio says:

    Did you know that several years ago Vitamin E (in huge quantity) was used to balance calcium metabolism? There was a case (Johnny Crowe). His muscles were turning to stone. Several things were tried and when vitamin E was used (I guess in quantity between 400ui to 2000ui) he began to recover. His muscles softened and then he could walk again. This story is found in the book ‘Health Preserver’, Wilfrid E. Shute (page 84 – Balancing Calcium Metabolism).
    On my opinion other things can help. High doses of magnesium and vitamin K2; both are involved in calcium metabolism.



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