New equipment at our house – summer 2017

Posted by Karen - September 24th, 2017

If there’s one thing you learn about life with fibrodysplasia ossificans progressiva (FOP), it’s that change is inevitable. Change in body posture, change in abilities, change in range of movement are all to be expected. And, when that change occurs, sometimes the person with FOP needs new aids to promote more independent living.

This has been my daughter Miranda’s situation in 2017. She developed a left knee flare-up in January, and since that time the flare has snaked its way up and down and around her leg. We think it’s finally drawing to a close (or may perhaps even be finished), and in its wake, it left an immobilized left knee, a lump of bone in the thigh muscle, and a left hip with much-reduced ability to move. Her left leg is now cocked permanently forward. Miranda can still walk and sit following these changes, but much differently than she did before. As for walking, her stamina is much reduced, and it’s very difficult for her to climb stairs – takes several minutes and an awkward posture to accomplish. Regarding sitting, Miranda is somewhat reclined, and cannot sit up straight with both hips bent at a 90-degree angle.

And so, this brings me to the topic for today’s post… Recent equipment acquisitions at our house. Specifically, the past couple of weeks have marked the arrival of two new items to cope with Miranda’s recent changes.

First to arrive was a custom-made commode seat. Who knew there was such a thing? Certainly not me, until recently. I had gotten talking a couple of months ago to a rehab specialist at our local children’s rehab centre, and told her about Miranda’s new posture challenges. Next thing I knew, she had arranged for a “custom commode specialist” to come to our house and do an assessment. Yes, there are indeed folks out there, such as this fellow, who make their living demonstrating and selling custom toileting arrangements! In any event, this helpful guy showed us a few different set-ups, and ultimately we focused on a simple model which is a metal frame on lockable wheels, atop which sits a rubber-covered, foam constructed toilet seat. The seat itself is the customized part – the commode specialist had Miranda sit down on a block of dense, cuttable foam, and from there he carved away all necessary bits to conform to Miranda’s 3/4 sitting/standing posture. When the shape was correct, he took it back to his company’s headquarters and had it covered in a thin rubber surface, and then finally mounted onto the commode frame. The end result looks like this:

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It’s really a pretty great arrangement. Because it’s on wheels, we can keep the commode frame in a little “nook” under the counter in our main bathroom, and when needed, we simply roll it out and place it over-top of the toilet. We then lock the front wheels in place to prevent it from moving, and voila! Ready to use.

The custom commode guy commented that this one was a really unique project for him – he had never done one quite like this before. Good thing he had ingenuity and a flexible mind…

This project was funded entirely by British Columbia’s “At Home” program, which covers the costs of equipment for kids with special needs. Our rehab consultant submitted the funding request to At Home, and within a few weeks, the approval was in place to get the project underway. Total turnaround time was about 4 months from first conception of need to finished product.

The other item we obtained is a wheelchair lift for our backyard, so as to lift Miranda, either standing or in wheelchair, from the ground level up to our deck level. From the deck, she can then enter the house on the main floor and not have to climb stairs. This project took several months to accomplish.

By way of background, until early June of this year, we lived in a townhouse with multiple stairs. This wasn’t a problem for Miranda until this spring when her left leg problems began. By coincidence, that was also the time we had planned to start the search for a new, more accessible home. Anyway, our dive into the Vancouver real estate market very quickly revealed to us that we would have to move FAST if we found a suitable place – the real estate market here is absolutely insane, with properties being snapped up for well over asking price within a day of open house. We decided that our main priority would have to be a bungalow or rancher (main living area all on one floor), in the right geographical area, and beyond that, we’d work to adapt the place to our needs. Beggars can’t be choosers in the Vancouver real estate market; if we had held out for a perfect place with absolutely everything as we needed it, we might never have bought a new house… In any event, the house we bought is a rancher, but one with a split level – you enter the front door and then immediately go up a few steps to the main level or down a few steps to a lower level (with laundry/furnace area, one bedroom, and a family room).

The new place was a big improvement over our townhouse but still was not completely wheelchair accessible. We ended up hiring a company to replace our fence (which was falling down; that bit had nothing to do with accessibility), and also to build a concrete path from our carport at the side of the house into the backyard over to the deck. We also then arranged for a disability services company to install a wheelchair lift. The lift was finally delivered and fixed in place this past week.

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The lift can be controlled from inside, from the bottom, or from the top, and has a magnetized gate at the top. It can carry up to 750 lbs, which I understand is more than enough for a person in a motorized wheelchair. Miranda has been using the lift for a few days now, and it impressively speeds up her ability to get from the carport into the house. Wonderfully helpful.

The lift could possibly be covered by the At Home program as well. However, we had decided that we were going to proceed with it regardless, and that Miranda’s need was such that we didn’t want to wait the necessary weeks/months to get the funding approved. The price was steep, yes, but within our possible budget for home alterations, etc, and we had paid a bit less for our house than we had thought we would, so in the end we simply decided to pay for the lift ourselves. I’m going to find out if it can be reimbursed by At Home after the fact, but if not, we’ll simply absorb the cost (yes, we very much appreciate how fortunate we are to be in a financial position to do that).

There you have it – equipment additions to our house which help with independent living.

4 Responses to “New equipment at our house – summer 2017”

  1. Madi says:

    I’m enjoying reading about your sweet girl and learning about FOP. I was on the IFOPA website reading about the condition and how the new bone forms. It raised a question and I thought perhaps you might be able to answer!
    So as I understand it, new bone formation is akin to the healing process that occurs when you have a fracture. That made me think of false joints that can form when you have an untreated, un-immobilized fracture. Basically, the fracture is disrupted so much during healing that no bone forms; instead, connective tissue forms, creating the false joint.
    If you were to continually move a joint during a flare, could you prevent it from freezing? Basically disrupting the bone formation until the flare is over? Or is the swelling and pain so severe that this just wouldn’t be physically possible? Or perhaps the flare might continue indefinitely since it could perceive that movement as new “trauma”?
    When a joint is undergoing a flare, is there anything that can be done to alter the position into something more comfortable or functional? (I.e. With splinting or PT or something along those lines?)
    I’m sorry; I hope this doesn’t seem like a dumb question!

  2. Karen says:

    Hello Madi! Thanks for your question. It’s not dumb at all. You did pretty much answer it though – the intense swelling and the pain makes it too difficult to keep moving the joint all the time. Not to mention that of course the joint becomes still at night while the person is sleeping…

    As for altering position, yes, that can be done, though not without some considerable pain. Some adults with FOP have said that when they realized a certain joint was fusing a certain way, they forced it to bend more, or straighten more, and then held it firmly in that position. Frankly it sounds incredibly painful to me, but folks say it can be done.

    Thanks for asking!

  3. Stella says:

    Hi, i came across your blog as a result of curiosity. i was read about FOP. I think you are such a great mother and your consistence isa top notch. Your daughter is so lucky to have a mother like you. I wish you all the best life can offer.

    You might want to read this article: https://www.theatlantic.com/magazine/archive/2013/06/the-mystery-of-the-second-skeleton/309305/

  4. Karen Karen says:

    Hi Stella! Thanks so much for your kind comments. I am aware of the article in the Atlantic, which I think is very nicely written.



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