Tag Archives: CP

The Mother of Invention

This weekend I got to spend some time with my twin. I have not seen her in quite a while because she lives in another state and has a large family, which makes it hard to travel. The distance sucks, but we talk a lot, and even when we don’t there is a bond that no one can touch. I think it would be awesome if every disabled person in the world had a twin. Unfortunately that is not something we can market on the UNlimiters’ website.

My twin has been an invaluable part of my UNlimited life. When we were young she was my constant companion and I would work hard trying to keep up with her. In turn, she would adapt her play for me or help me do something. We were always conniving, her and I. I remember when we had a bunk bed as kids. We both really wanted me on the top bunk, so she pushed and I pulled and somehow we got me to the top bunk. We were thrilled; but then, of course, we couldn’t get down from the top bunk.Then there was the time she tied my trike to her bike and tried to tow me along behind her. It worked for about 5 seconds before I tipped over and was almost hit by a car.

She wasn’t always nice, though. We may have been twins but we were still sisters, and sisters can be mean sometimes. She didn’t always enjoy having me tag along. Sometimes our parents forced her to take me with her in the wagon or my stroller; on these occasions she would take me far enough that I was out of sight and earshot of the house, then leave me stranded while she went to play. She also liked to make me pee my pants when she was feeling extra mean.

These days, she has given up on most of her mean tricks. She is still my best partner when it comes to adaptability, though; she is always helping me come up with new ideas. Even though she doesn’t have CP, my sister seems to understand the way my body works in a way that other people don’t. This makes her a good person to brainstorm with. For example, this last weekend we were at a party at our other sister’s house. A bunch of us were sitting on a blanket playing with my baby niece; but I had to lie down on the blanket because I cannot sit up independently on the ground.

I could have easily sat in a chair, but I wanted to feel included. As I was holding myself up, my twin thought that the wrap she uses to hold her baby hands free could be tied around me in a way that would support my back and allow me to sit up independently. There was a lot of giggling, my oldest niece and my mother thought we had gone crazy, but after some thinking and a few strategically placed knots we came up with this:


It worked, but after fifteen minutes my neck started to hurt, so the design needs some tweaking. Of course, after we posted the picture of Facebook, my ever practical college roommate suggested that this stadium chair might be an easier solution. I will have to try it; if it works I might be a little sad. My twin and I were sure that we had struck gold with this particular idea.

Fiber: What is it Good For?

Some of the tools that we use to live an UNlimited life are not as obvious as others. When people think of the items that might be helpful to someone with a disability, they often think of assistive technology like wheelchairs, prosthesis and lifts. They might even think about intangible things, like support from family and friends, a sense of humor, or perseverance; but chances are that unless you ask a doctor, things like your diet do not get included in the conversation.

We have all been told that a good diet is important to living a long and healthy life. We all know that fruits and vegetables are “good,” while sugars and simple carbohydrates are “bad.” But few of us can really say why, and even fewer of us can say what exactly those good foods are doing for us.

Recently I learned that fiber, a carbohydrate that is found in whole grains, beans and many fruits and vegetables, not only plays an important role in my UNlimited life, but my husband’s as well. Of course I always knew that fiber was good for me, but other than cancer prevention, I didn’t understand why.

Earlier this year I went to my CP specialist complaining of a new and embarrassing symptom, incontinence. I had just turned 30 and felt too young to be dealing with this sort of a problem. To my surprise, she recommended fiber. As it turns out, constipation (another wonderful problem often associated with CP) can cause urgency and accidents because as waste builds up in your bowels in can cause pressure on the bladder. Because I have a history of constipation, as far back as early childhood, my doctor wanted me to try adding fiber to my diet before prescribing a drug for the incontinence. Sure enough, it helped; not only am I less constipated, I find those frantic sprints to the bathroom have decreased.

I also learned that fiber is not only good for me, but also for my husband who has diabetes. Soluble fiber has been found to produce a significant reductions in blood sugar, and can decrease insulin requirements. Increasing your fiber can also prevent long-term complications from diabetes. Though my husband already enjoys many high fiber foods such as brussel sprouts, strawberries and peas, we are both eager to see what adding a high soluble fiber supplement will do to help control his blood sugar. Of course, we plan to talk to his doctor first.

Adding a fiber supplement to my diet turned out to be a great benefit for me, but I never would have discovered if it weren’t for the open and honest conversation I had with my doctor. Sometimes talking about certain symptoms, even with your doctor, can be embarrassing. But it’s important to remember that you’re probably not the first person to experience these issues, your doctor has probably heard it all and they are there to help find a solution that works best for you.

Ironing Will Never be Fun, but it Doesn’t Have to be a Struggle

ironingLike so many other children, I wanted nothing more than to grow up so I could do what I wanted when I wanted. It took about five minutes of living alone to realize that I had been foolish. Being a grown up does mean you can mostly do what you want when you want, but it also means that there is no one else around to do what needs to be done. Household chores become solely your responsibility, and they aren’t any more enjoyable as an adult.

Ironing is one chore that I avoided successfully for 28 years. If something was wrinkled, I wore something else. If I had no other options, I would sometimes throw it in the dryer hoping for the best. But most of the time, I would just put it on anyway and hope that by the time I got to where I was going the wrinkles would fall out on their own.

I was perfectly happy with this arrangement. However, when I started quilting I discovered that ironing, and more specifically pressing, was going to be necessary. My mother gave me an iron and for a while I borrowed an ironing board; but I knew that eventually I would need my own.

I also knew I would have to find something that would fit my needs. I probably had a more few requirements than the average person buying an ironing board. I wanted to be able to use it standing or sitting, I wanted to be able to put it away independently, and I wanted it to be big enough to work with my larger quilts. This over the door ironing board turned out to be just the right fit. When open, it is a good height for sitting or standing, folds up against the wall for easy storage and is 14 inches wide by 42 inches long.

I have been using this board for a few years now and it works well. The ironing board can bare a lot of weight, which is especially good since I tend to lean on things while I work; so for added stability I put a wedge under my door to minimize shifting. I will caution that because this board only attaches to the top of the door it will slide an inch or two if leaned into, This slight shifting has not caused me to fall or loose my balance, and if not an issue at all when I am sitting because I don’t lean into the board.

I still hate ironing and pressing. In fact, it is my least favorite part of quilting. I have by no means gotten any better at ironing my clothing either, but this board makes this dreaded chore a little bit less of a burden.

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