Living with Cerebral Palsy

Well, I guess I should clarify the title. I wouldn’t give up my God, my kids, my family, my church family, and . . .

I guess I would give up my house, if I could have a TOTALLY handicapped accessible home that I didn’t have to pay for, and I could still live in the same town.

So, are you curious yet? What do I want to do so badly that I would be willing to give up something?

Give into the Temptation

Okay. For those of you that haven’t peeked already, go ahead scroll down. I’ll wait . . .

Last night when I was getting ready to go to the special event at church, (that I never made it to) I was so wishing that I could soak in the hot water. But, it has been 20 years since I have taken a bath. It has simply become to difficult and dangerous to lift myself in and out of the tub.

Of course, I guess I could start chasing guys, in the hopes of finding myself a big strong husband to lift me in and out – NOT! Well, I guess I found one more thing I would not give.

But, soaking under a hand-held shower head is definitely not satisfying, and the water does not stay hot long enough. The bathroom in this picture is probably about as big as my whole house! Regal looking, but totally not necessary.

I would settle for a slight alteration to my shower stall. How difficult would it be to turn it into a walk-in bathtub? (VERY) But, boy would it feel good to soak in a tub, especially when I am achy, until I started to look like a raisin, especially on these COLD winter days.

So, if you had a genie in a bottle, what would you wish for, to make living with cerebral palsy just a little bit more comfortable.

As many of you know, I started this website in an effort to provide a place for people to share about living with cerebral palsy. Whether they have CP or love someone else who does, I wanted a place where we could share our struggles and our triumphs.

Maybe somewhere along the line, we could find new friends and share a few laughs. For this reason, I sometimes share some of my most embarrassing moments or situations I find myself in that I couldn’t make happen again, even if I tried.

A couple of years ago, a Christian publisher and friend told me that if I would share my story, he would help me get it published. So far, I have the introduction and dedication, and a whole bunch of ideas stuck in my head. However, I spend so much of my time writing articles for other people, by the time I can sit down and work on the book, I am not in the mood.

Enter Living with Cerebral Palsy

Although I am not in the mood for tackling a book that will essentially bare my soul to anyone who reads it, I do feel like God has made me the way I am for a reason. Instead of hiding behind my disability, I can use my experiences and ability to write to help encourage others.

So, I started Living with Cerebral Palsy. In the process, I think this site has helped me as much as it has helped anyone who reads it. Although there are definitely days when I feel whiny, I never wanted this blog to be an excuse to gripe and complain. I also never intended for it to help my financial situation, like many of the blogs and websites on the Internet.

Living with Cerebral Palsy is the one time I write during the day that I love. My heart is in this site and I really hope it serves a worthwhile purpose.

Tough Economics

Maintaining this site doesn’t cost a great deal. It’s around $60 a year. But, I actually debated, at the beginning of the year, whether I should continue paying for the blog URL and hosting fees. The last few months have been really difficult financially. I had almost no work, and the child support only goes so far. I even asked an attorney friend if she knew someone who could help me with bankruptcy, if it came to that.

Honestly, I sometimes wonder how we are making it. I am definitely the “poor relation” in our family. Plus, friends at church know we struggle. But, even with their occasional help, I find it amazing that we seem to always barely keep ahead of our bills.

All I know for sure is that God is good, and I believe he is watching out for us. We may not always eat what we want, but we never go hungry, the house is warm, and we have clothes on our backs.

Paying for the Site

So, although my visions for this site have absolutely nothing to do with making money, and I never intended for it help me out financially, I have recently been offered a fee for someone to advertise on the site.

From my understanding, he is a lawyer that has a son with cerebral palsy. Because of his own personal experiences, he has now dedicated his practice to helping people with cerebral palsy with legal issues. Since I believe he essentially has the same desire to help make a difference in the lives of people living with CP, I have accepted the offer. It will help pay for the cost of maintaining the site.

So, by now, you are probably wondering what a picture of a Kindle has to do with this blog. Let me explain:

If you have explored my site, then you have seen the Amazon banner. I advertise disability aids and products. If you were to click on that banner, it will take you directly to Amazon, where you can buy that particular product. When you do, I will possibly make a few cents, or even a few dollars, depending on the cost of the product. It doesn’t cost you more money. I just get paid a bit for advertising.

But, what many of you may not know is that if you use the banner as a porthole to Amazon, you don’t have to purchase disability aids for me to earn a little extra. You can buy anything, and I will get credit for being an affiliate.

For example, there seems to be a influx of friends and family purchasing Kindles lately. Birthdays, Christmas, anniversaries, and I hear about how great the Kindle is. My sister listened to two books while painting a room. While she crafts for Wyoming Rose, she listens to books.

A couple of days ago, I realized that I might have enough extra money for a Kindle myself, if I had told my friends and family about my affiliation. They could have gone through my site, got the same product, and I could have been saving for one of my own.

So, when I mentioned this tidbit on FaceBook, I got some unexpected responses. Faithful readers of the blog had no idea that they could click on the Amazon banner and order any product Amazon sells – not just stuff for the disabled. (You can even order more books for your Kindles!)

Now you Know

Well, now you know a little bit more information about the Living with Cerebral Palsy site and how advertising and affiliate marketing can help me make a little extra money to pay for the site and maybe have a little something left over.

Do with this information as you will. Either way, my purpose for this site remains the same. I want to provide a place for those dealing with CP, in one way or another, to find information, support and encouragement. Whether you help me save for my own Kindle or not, my goal will not change.

A request for help was sent to me this evening:

I am a speech teacher and I work with two students who are in the 8th grade and have CP. I installed Dragon on Student 1 laptop and this student is succesfully using the software. Student 2 has speech that presents as more dysarthric. Articulator placement is less precise. Dragon will not read Student 2′s speech. We trained it a word at a time. I typed it in the training component and Student 2 spoke. This will take a long time and I would put in the time but it is still on 25% accurate. Is there other software, hardware out there. Any strategies to suggest to help student 2. Student 2 is extremely smart. Thanks

I am very sorry to say that I don’t have the answer. The best voice activation software that I know about is Dragon Naturally Speaking. They have a new version out that is supposed to be even more accurate than the others.

If you click on the picture, it will take you directly to Amazon.com, where it is about $40 cheaper, and you can read more about it.

If any of you have something that works better, please comment on this blog and let Katie know. Thank you!

When I was in my 20′s, decades ago, I met a young man with cerebral palsy that was very smart. At the time, I thought he was good looking too. I enjoyed his company very much.

We were both in New York to have experimental surgery to see if it could lessen our cerebral palsy symptoms. While my biggest challenges are my legs, his was speech. If you took time to really listen, it was not hard to see that he was intelligent. But, the average person might assume he was drunk or dumb, because of his inability to talk well or walk without wavering.

Speaking for You

A few years ago, I met a young boy with severe cerebral palsy. Yet, he always had a smile and was a joy to be around. He too had difficulty communicating. Since he could only use one hand, with difficulty, his mom taught him limited sign language, so he could tell her when he was thirsty, hungry, etc. Meanwhile she was desperately trying to get a grant or some sort of funding necessary to get him a device that would help him communicate more, and with those that didn’t know his signing.

I also subbed a few times for special education. One day, I was in the resource room for severely challenged children, and this boy was learning to communicate with the teacher, although he could not intelligibly say a word. She was teaching how to use something like the Pathfinder Plus communication device. As long as the individual has the use of one finger, or maybe some kind of pointer between the teeth, this technological wonder can help him/her communicate with people.

What is it Worth?

What would it be worth to you, if you could tell your family you loved them for the first time? What would it be worth to hear someone with severe speech problems communicate their needs and wants? Can anyone put a price on speech? Of course not! It’s priceless.

Most of us have heard of Stephen Hawking. He is the famous scientist with a progressive illness that has left him almost totally paralyzed. I have seen him on the news, and he communicated with an electronic device that talked for him. But, he is famous and probably not hurting for money. What about you, your son, or your daughter that has trouble speaking?

Personally, I don’t know what I would do, if I didn’t have Medicaid and had no help to pay for my manual wheelchair. I wouldn’t even be able to get myself to the bathroom. My children and I would be truly destitute, if I had to pay for medical expenses.

But, I don’t think it can even compare to the inability to communicate. I can’t imagine being trapped inside my body, with no way to tell people that I was totally aware of everything and everyone around me, I just couldn’t communicate.

However, I do believe what my mother always taught me: Where there is a will, there is a way. In Wyoming, we have assisted living programs. They provide grants that make it possible to live better with a disability. When I lived in an apartment, I got a grant to have a concrete ramp and rails leading to the front door. I was still on crutches at the time, but about ready to sit down permanently. It helped a lot.

So, although I have never applied for a device like this, there has to be some kind of grant or program to help you or a loved one have the ability to communicate. If all else fails, have friends and family host fund raisers. (I once crocheted an aphgan that was raffled off for over $1000, to help a lady get a liver transplant.) I am not exactly sure how to go about it. But, where there is a will . . .

Ok. I confess. I normally shower every other day. Since I sit around all day under a throw, with my computer on my lap, I don’t usually work up a mighty sweat. Showering is just difficult enough that I sometimes dread the process.

My Bathroom

My bathroom has a metal rail made out of curved pipe, between the commode and the shower. I can hang on to it, in order to pull myself up from the wheelchair onto the stool. I can also use it to hold onto, while I slide onto the shower chair.

Attached to the wall at the head of the shower is a handrail. It also helps me get my bearings, until I can balance and transfer my weight to the chair.

I used to have a simpler one, like the chair to the left. But the space between the rail and the chair was too great. On more than one occasion, I failed to pull myself across the space and onto the chair. Instead, I ended up sitting on the shower floor.

If your body is dead weight from the waist down, you know how difficult it is to get up from a fall. Add 50 lbs. overweight, and I was lucky I didn’t have to call someone to pick me up. It was one of the reasons I started to lose weight. I didn’t want my kids to find me in my “all together”, so to speak.

But, even with half of that excess weight gone, I still don’t like to pull myself into the shower. However I did find something that helps a whole lot. I got another kind of shower chair that actually hangs out past the shower, closer to the handrail. I don’t think I have fallen, since I got this type of chair.

Of course, it also works if your bathroom has a tub. You can sit on the outside, pick up your legs to swing them over, and slide across. The only problem I have found is the tendency to get water on the floor, if the hand-held shower head points toward the bottom of the curtain. I have to be careful how I drape it over the chair, so that water won’t leak out during the shower.

Although I still have to be very careful lifting myself in/out of the shower, the different shower chair makes it a lot safer. Plus, it does not wobble at all, when I have to lean my weight on one side.

What about you? Do you have special disability aids that make showering and other day-to-day activities a little safer when you are living with cerebral palsy?