Living with Cerebral Palsy

When I started this blog at the beginning of this year, I wanted to provide a source for help with Living with Cerebral Palsy. Although I haven’t always posted regularly, I have had some very good comments and even the much-sought-after topic suggestions.

Recently, a couple of readers have really blasted the blog. Some I believe are spam. The sender hopes I will use their services. I am not sure. I have included some of the more polite comments, and answered as best I could.

However, I have also had some helpful suggestions and requests. Some readers also have sight difficulties, so they want the blog with an unobtrusive background and easy to read. Others would like it a little more colorful and pleasing to the eye.

I have literally spent hours this evening trying to find a viewer friendly template and then altered it to show a little more color and make it a little easier to read.

Now, I want your opinion. What do you think? Do you have any suggestions?

Of course, I will not be able to implement all of the website ideas, because they will literally conflict with others. But, I will try to take the majority into consideration and improve the look and presentation of the blog, so it can be a better help for those living with cerebral palsy.

Thank you in advance!

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?

You and I both know that Living with Cerebral Palsy takes a lot of patience and perseverance. Well, mine was almost tested to the limit in the last few days.

Most importantly, my site has not been working correctly. You may have been able to view the first page, but you couldn’t follow the links or older posts.

After 4 days and many hours on the phone, and also testing the patience of computer programmers and techs, I think it is fixed. However, if you have any problems following the links, let me know. I may not have found all of the broken ones.

Well, I guess it is about time for another funny story-on myself of course. Tune in tomorrow, and see what kind of fix I have managed to get myself into, while living with cerebral palsy.

Although I must admit I am very glad I was able to repair my own plumbing problems, from my wheelchair, and save some money, I am very glad I don’t have to do that for a living! Of course, I am grateful for those who have made it their chosen profession. The world needs good plumbers!

However, when it comes to paying the bills and putting food on the table for my family, I am a freelance writer. Due to increasing difficulty with mobility issues and other health problems, I began to work at home full-time in 2007.

I had already been freelancing for about a year and a half, but a broken knee dictated a drastic change in occupation. I couldn’t continue applying for teaching positions, and substitute teaching and tutoring was out of the question. So, I started seriously freelance writing, so I could pay our bills.

I sit under my laptop the majority of my waking hours. Freelance writing is not like writing for a novel. It is basically selling a clients product, service, or idea. I write blogs, articles, and website material for the Internet. Sometimes, I write eBooks and other material.

It seems like working from home is either feast or famine. Sometimes, I am so busy, there are not enough hours in the day. Other times, I spend my time pounding the virtual pavement looking for new clients and their projects.

Lately, I have not been as faithful writing frequently for the blog, because I am going through a busy time, and for some reason I have been exhausted at the end of the day. Fortunately, I have not had any plumbing challenges lately. However, I’ve been teaching myself the back end of websites-the part that most people don’t see. I find it very interesting, and I hope to take an online programming class next year.

The reason I am telling you what I do is because I want you to know that it is possible to find employment at home, even if it is too hard to get out and go to a regular job. In fact, more and more people are choosing the option to telecommute or start their own business working at home. The majority of these people are not even living with cerebral palsy.

If they can do it, why not me or you?

What do you do for a living? If you can’t work, what do you do to occupy your day?

A few days ago, I told you that I had a difficult week both professionally and personally. Part of my problem is that according to personality tests I am 90% emotional, and my mom always told me that I had a tendency to wear my heart on my sleeve. Unfortunately, she never warned me about wearing my sleeve on my leg!

Ok, at the time it wasn’t funny! It seemed like everything was going wrong. I was frustrated with work and frustrated with being stuck in the house all winter. But, there is no way around it, I couldn’t do this again accidentally, if I tried:

My very good friend, who is actually like having a second mom around, decided to sew me a homemade ‘snuggy’ for my birthday. I sit around so much, and I get cold. But, I need my arms and hands free to type, so it was the perfect gift. I have it draped over me most of the time.

Now, it is better than the store-bought versions. It is about twice as thick, with pockets, in case I need to carry something. Plus, it is a beautiful leopard print. But, I swear this leopard attacked me last week!

Draped over me feet and lap, I was working. But, natural called and I had to answer. I went to pull the ‘Judy blanket’ off and throw it to the side of my recliner, so I could get in my wheelchair. Unfortunately, it was STUCK! As you know, even if we are considered incomplete paraplegics, we have feeling. So, I was sure I would feel it if I was laying on the blanket.

So, I just gave it a little tug. Wrong move! Next thing I know, I realize I had draped the blanket on sideways and I was now wearing the sleeve on my leg. Unfortunately, a few days before, I had also busted my ‘pinchy sticks’. You know they are my favorite tool for dressing and everything else. How was I going to get this off my leg in a timely manner? Remember, I had to go to the restroom.

Now, imagine me grabbing my thigh with my hands and manually shaking my leg up and down until the sleeve fell of my leg. Trust me! I am more careful about how I drape my ‘Judy blanket’ (as my kids affectionately call it) today.

Do you have any funny experiences of living with CP that you wouldn’t or couldn’t have done on purpose, if you tried? Phil Stephens says cerebral palsy isn’t for sissies. I will have to add to that and say the people with CP definitely need a sense of humor.