Life with FOP
Loss of independence is a big part of FOP. Progressive restrictions, usually starting with the upper body make simple everyday task a challenge. Because FOP usually begins in the upper body by restricting neck, spine, shoulders/arms individuals with FOP may not be able to raise their arms to scratch their head, wash or brush their hair, put make-up on, etc.
We welcome helpful tips and stories from and for families on how some of these challenges are met.
We welcome helpful tips and stories from and for families on how some of these challenges are met.
A Bidet for Miranda (2009)
By Karen Munro, British Columbia
“You mean it squirts water at your BUM??” My daughter Miranda thought the idea of a bidet was pretty darn funny. And, when I said we were getting one for our house, she couldn’t stop giggling! Of course, when you’re 5 years old, anything involving your rear-end is hysterical.
In June of 2009, I had the chance to see a bidet in operation at an FOP household. It turns out that modern bidets are not standalone items, like the vision I had in my mind (from old European movies, maybe?), but rather are units which attach to the top of your existing toilet. The bidet washes your behind with a pressurized spray, and then dries it with warm air. I was pretty impressed with it, so decided to look into getting one for our house. Miranda’s arms are quite restricted by FOP bone, so she doesn’t have much reach, and I thought a bidet would give her some measure of privacy in the toileting process as she grows older.
The first step was to go through a slow and convoluted process of determining whether or not we could get the cost of the bidet covered by our provincial disability equipment benefits program. Answer: no (boo!). We ended up having to look at other sources for funding, including a private grant, partial coverage by our extended health care insurance and some of our own funds.
When we got that sorted out, it turned out we needed a special kind of electrical outlet in our bathroom, so we had to have that installed. Then, finally, we were ready for the bidet.
It’s now been about a week since we’ve had the bidet installed, and I’m impressed with it so far. I must say that the seat warming feature is VERY NICE! And, as the bidet functions are executed via a remote control, veteran TV users feel right at home with it. ;-) All joking aside, though, I think the bidet will assist with bathroom use for my Miranda as she grows older. Using a bidet is a bit slower than the old fashioned way of using the loo, but hey, nothing’s perfect...
“You mean it squirts water at your BUM??” My daughter Miranda thought the idea of a bidet was pretty darn funny. And, when I said we were getting one for our house, she couldn’t stop giggling! Of course, when you’re 5 years old, anything involving your rear-end is hysterical.
In June of 2009, I had the chance to see a bidet in operation at an FOP household. It turns out that modern bidets are not standalone items, like the vision I had in my mind (from old European movies, maybe?), but rather are units which attach to the top of your existing toilet. The bidet washes your behind with a pressurized spray, and then dries it with warm air. I was pretty impressed with it, so decided to look into getting one for our house. Miranda’s arms are quite restricted by FOP bone, so she doesn’t have much reach, and I thought a bidet would give her some measure of privacy in the toileting process as she grows older.
The first step was to go through a slow and convoluted process of determining whether or not we could get the cost of the bidet covered by our provincial disability equipment benefits program. Answer: no (boo!). We ended up having to look at other sources for funding, including a private grant, partial coverage by our extended health care insurance and some of our own funds.
When we got that sorted out, it turned out we needed a special kind of electrical outlet in our bathroom, so we had to have that installed. Then, finally, we were ready for the bidet.
It’s now been about a week since we’ve had the bidet installed, and I’m impressed with it so far. I must say that the seat warming feature is VERY NICE! And, as the bidet functions are executed via a remote control, veteran TV users feel right at home with it. ;-) All joking aside, though, I think the bidet will assist with bathroom use for my Miranda as she grows older. Using a bidet is a bit slower than the old fashioned way of using the loo, but hey, nothing’s perfect...
