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Living with Cerebral Palsy and Standing Tall

Today, I was taking a break from work and reading my FaceBook page. While that is not unusual, and has nothing to do with Living with Cerebral Palsy, an ad in the right hand margin caught my eye.

If you are like me, standing is not an option. Yes, I have rails and such in my bathroom, so I can transfer to the shower, etc. But, I haven’t really stood up for 8 years, since putting down my forearm crutches. I know some of you have never stood on your own two feet. So when I saw the ad for Easy Stand, I wanted to tell you about it right away.

The contraption enables people with cerebral palsy that are incomplete/complete paraplegics to stand on their own two feet once in a while. For me, I would love to be able to stand up just long enough to cook supper or unload the dishwasher, so I could look into the pot or reach cupboards. Right now, I can’t imagine such a treat!

I got this picture off their site, so you can get the general idea. This is the youth version, but they also have ones for adults and extra tall and heavy adults.

My first thought is that a standing aid might have helped prevent my non-active osteoporosis. Bones and muscles that don’t get used weaken. But, would it also make it easier to do some chores? Would it simply feel great to get off my bottom once in a while?

Do you use one? Would you, if given the chance? Should those of us in wheelchairs start saving for one? Let me know what you think.

Disability Aids, living with Cerebral Palsy     No Comments »

Handicapped Accessibility and Living with Cerebral Palsy-NOT!

Although I truly believe that the United States is one of the most, if not the most, handicapped accessible nation in the world, I have dealt with a few instances, in the last weeks, that remind me of the fact that I cannot always go where I want to, even in America.

About 2 weeks ago, my daughter moved to the college campus. She got a good deal on the rent, if she came a couple of months early. Unfortunately, I haven’t even seen the campus yet; a friend helped her move down and check the place out.

Why? Of course! Her apartment is on the 3rd floor, with no elevator! I would have been useless.

Today, I went to the doctor. Of all the places that should be handicapped accessible, it should be the doctor’s office. I love my doctor, but her office-not so much!

The first 3 parking spaces are designated for the disabled. Unfortunately, the first and part of the second space are next to a steep decline in the parking lot. For people not in wheelchairs, it might be okay. But, I always feel like one small miscalculation and the doctor will be fixing more than whatever’s ailing me at the moment-like broken bones!

If I survive the parking lot, there are two doors to get through, using manpower only. Fortunately, they watch for me and usually come help.

However, I would have to say that the first place winner in the contest for handicapped accessibility and living with cerebral palsy-NOT- is the porta-potty at one of my son’s favorite parks.

It looks something like the picture, only blue. From the outside, I thought it looked pretty cramped for a wheelchair. Fortunately, my friend had to use the facility and could report on the true nature of this accommodating commode. Yes, my wheelchair would fit in there, but for 2 problems:

1. The ground slants steeply up to the building. Okay, I can understand that, because places to put potty’s might be limited for cleaning purposes. But . . .

2. There was a step up into the facilities. Even if a friend is able to give me a shove up the hill, how is it possible to navigate a step up, before being able to get in the door. Even if someone could muscle me up, there was no place to set the chair, navigate the door, get turned around, use the potty, and get back down.

Now, I understand that not every place can be handicapped accessible. I am truly grateful for the many places I am able to navigate. But, if it’s advertised as accessible, make sure it really is!

Who are these people? If they don’t really know someone with the challenges of a disability, they need to “walk in his/her shoes” for half a day. I don’t think it would take any longer than that to figure out that steps and wheelchairs, or other such challenges, don’t go together.

So, what handicapped accessibility issues do you face on a day-in/day-out basis?

living with Cerebral Palsy     No Comments »

Is Living with Cerebral Palsy the Right Choice?

No one ever told me how difficult the month of May can be, when your daughter is graduating from high school!

I bet you thought I forgot about you, right? Not so! But, I haven’t had many new suggestions for articles. So, I am going to play the devil’s advocate and ask a VERY controversial question:

Is Living with Cerebral Palsy the Right Choice?

When I was born 7-8 prematurely half a century ago, it was a miracle that I survived. Today, babies born 4 months early are surviving, thanks to advances in medical technology. But, at what cost?

A couple of weeks ago I read the article: Two new pieces of research raise a profoundly troubling question: Is it sometimes wrong to keep premature babies alive?

Several cases of premature children are highlighted in the piece. In short, parents are given the agonizing choice to allow their child/children to die or let the doctors to use extreme measures to sustain life. What makes the choice so difficult is the prognosis. Allow you child to die, or save his/her life at the risk of being profoundly disabled for a lifetime.

In some cases, the parents are blessed with a healthy child, in the long run. Unfortunately, other kids are quadriplegics, severely mentally disabled, in pain, and unable to do anything for themselves.

So, read the article. Then, share your opinion. Should doctors use extreme measures to save a baby that will likely suffer brain damage and live a life of struggling with cerebral palsy and other health concerns?

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