Living with Cerebral Palsy

Well, I got my new wheelchair. It is wonderful! My seater rumpus feels sooooo much better! Unfortunately, less than two days later, my toilet got stopped up, wouldn’t quit running, and subsequently ran all over the floor!

Now, if you are like me, you don’t have the money to pay a plumber time and a half to unstop a stool. Even if he is only here for five minutes, the base charge is probably over $100. So, me and the new wheelchair braved the bathroom tsunami!

So, armed with my trusty plunger, I plunged in, ready for battle. Unfortunately, the fight was more difficult than even I could’ve anticipated. My hand was getting sore, so I wore a glove. I took rest breaks. I was beginning to think I was going to have to retreat and call in reinforcements.

However, I was persistent. I am sure I have friends that would’ve come and helped me. But, frankly, I love them too much!

Finally! Mission accomplished. Now, I just had to clean up and mop the floor with disinfectant. Now, if you are in a wheelchair, you know all of this activity is not a 5 minute proposition.

By the time I was done, the only thing extraordinary about becoming a wheelchair plumber was how sore all of my extremities and gut were from the experience!

If you have spastic cerebral palsy, you know what I mean. When you are really working hard, all of your muscles tense up and get involved. For example, my legs work in tandem. I can move them a very little; when I do, they both move together, no matter how much I concentrate. I don’t know about you, but my leg muscles never completely relax, not even in sleep. The muscles are always working, usually in opposition to whatever I want to do. But, this was ridiculous!

Unfortunately, the war wasn’t over. Two days later, my stool wouldn’t quit running and exceeded its boundaries once again. It was time to take down the cause of the war, and claim victory once and for all!

After careful inspection and strategy building, I put down the plunger and traded it in for a screw driver! My toilet had a screw loose!

So, are you “handicapable”? Are you able to repair minor household problems, or do you have wonderful helpers that are there when you need them? Have you ever exceeded your own expectations living with cerebral palsy?

Elyssa Olson is a young woman living with cerebral palsy that I have been corresponding with over the last couple of weeks. She has mild CP and she is a Freshman at Whittier College. She agreed to write a post for me about her adjustments to college life. Here is what she has to say:

Elyssa

Going off to college for the first time is scary for everyone. Whether someone has small worries or big worries, whether a person has a disability or not- when a person is moving away from home to a new place where they don’t know anyone or how anything works, they always worry, even if they never admit it. For me, with mild cerebral palsy, I had worries about the normal unknowns and then the unknowns about coming to a new school and a new community that surround my disability.

My worries that surrounded my Cerebral Palsy were such things as ‘how will I bring food from the dining hall serving area to the table will I eat; how will I get in and out of the shower easily; how will I work with the disability office; what do I actually need from the disability office; do I need to bring my computer to class everyday; what is the best way for me to take notes and study with my learning disability?’

Before I even arrive at Whittier, I have a couple of conversations with the head of the disability department. She offered me two options for living situations: a double in an upperclassmen dorm (where it is quieter), or a single in a freshman dorm. I chose the single in a freshman dorm. There are several reasons for choosing the single for me. It is sometimes really awkward for me to change in and out of clothes, and in a single that is not a problem. Another reason is while the freshman dorms tend to be louder, in my own room, I could concentrate without many distractions. Also, if I am in a freshman dorm, I can get to know the people in my class better.

I made the right choice with my room. It’s great to a have a quiet room where I can sleep or study or changed whenever I need to, and my room is now set up in a perfect way so it’s easy to have movie nights with a bunch of friends. Speaking of friends, the girls in my hall are great and so easy to get along with. All of them took a freshman-writing seminar in the fall together in order ‘to bond,’ but all of them have each welcomed me into their group.

I put deep thought into my choice of Whittier College. Whittier is not the best school I was accepted into; however, it’s has qualities that sum up the right school for me, as a student and a person with Cerebral Palsy.

While I’m sure my course load and my homework load will increase with time, the academics here are such that I don’t have to stress out and overload myself most of the time, which is what I need to enjoy being in college, have fun at any point, and to spend time with friends.

There are many people with disabilities at Whittier, and despite its somewhat hilly campus, at least two of them are in wheelchairs; and there are a couple others that have walking assistance. To my surprise, there are several students, other than myself, with different kinds of speech impairments. Whittier’s diverse student body is a large part of the reason why I choose the school and why I hoped the students would be so accepting of outward awkwardness. Thank goodness there are.

There have been many small incidents of embarrassments or awkwardness on campus that in life I am used to, but on a new campus, trying to meet new people, are hard. In the dinning hall, for example, the problem is not getting my food to the table but is accidentally spitting on new friends, because I don’t have complete control over my the muscles in my month, and the drink goes down the wrong pipe too much of the time. I have learned quickly that a straw helps basically solving the problem, but I hate to waste the extra plastic. When I get excited about the subject of a conversation or when a conversation is going to fast, and my speech gets so bad that people can’t understand me, because I am trying to get my voice heard.

It was raining pretty hard the other day, and I wore the wrong shoes and slipped and fell down a whole set of stairs while walking with a bunch of friends. I laughed it off, while my friends were being concerned and caring. How embarrassing!

I realize how lucky I am to be able to blend in pretty nicely just walking around campus, if I don’t open my month. In most of my classes, I am rarely the only one with a computer taking notes. I am planning to get more help around my learning disabilities and how to handle them better. I will need their help once midterms come around; but, as of now, three weeks into the semester, I have only been to the disability department twice. Right now, it has been working out nicely to type my own notes in class without a scribe or a note-taker, but that might change, as the workload gets heavier.

Things are working out quiet nicely and somewhat smoothly right now. But as they say in my favorite musical, Avenue Q, “Everything in life is only for now!”

I found Elyssa’s stories so encouraging! She is an inspiration for people young and old who overcome their disabilities daily to get the most from life. You can follow her at CP Live. I will also add her to the blogroll.

As you may have noticed by now, I am trying to reach all persons living with cerebral palsy regardless of their age, lifestyle, or personal experiences. If you have information or experiences that you would like to share, please contact me. I would love to include you in Living with Cerebral Palsy.

Today, I came across an amazing story about living with cerebral palsy. I think you will find it very interesting too:

Inez Maisel, who turned 100 on Feb. 13, said she didn’t particularly want to live so long, but she’s thankful for her “interesting life.”

Verna Webber, 107; Inez Maisel, 100; and Lloyd Dresser, 101

Maisel may be the oldest living person with cerebral palsy, according to Nelson.

“I contacted some cerebral palsy experts,” Nelson said. “They said they don’t keep records, but they haven’t heard of anyone with the condition living to be 100.”

Nelson said cerebral palsy, which is usually caused by injury to the brain before, during or shortly after birth, affects body movements and muscle coordination.

Although experts at Cerebral Palsy Source, for example, said it’s not helpful to make generalizations on the life expectancy for adults with the condition, most people with moderate to severe cerebral palsy, such as Maisel, live to be 60 or 70. Appropriate health care and enjoying a satisfying range of occupational interests and social activities are factors that strengthen their will to live.

Maisel claims 75 years as a vegetarian didn’t hurt.

Speaking with the help of her sister Sunny Powers, who visits every day, Maisel said she led a productive life, helping care for other family members, making friends and sharpening her mind sharp through reading and keeping up with politics and current events.

Honestly, I cannot say I want to live to be 100 years old But, it is nice to see that our longevity doesn’t necessarily interlink with cerebral palsy.

I also agree with Maisel that trying to maintain a healthy body and a healthy mind will also improve the chances of living a longer, fuller life.

Personally, I would venture a guess that she also has a good sense of humor and spunky personality? What do you think?

Recently, I’ve had the pleasure of corresponding with 2 young ladies living with cerebral palsy. I hope I’ve encouraged them; I know they have encouraged me!

One young lady is a Freshman in college this year. The other is anticipating college and the future. Both want to work and be productive members of society.

I say, go for it!!!

If you have a service dog to help you function, it is the law that the animal be allowed to enter the buildings, even if it is a restaurant or the classroom. If you need assistance to go to college or get a job, such as someone to take notes, translate, carry your belongings, or whatever, there are services available to help you achieve the goal of becoming more independent emotionally, physically, and financially.

A good resource for exploring your options and possibilities is the Department of Vocational Rehabilitation. If you qualify for their services, they have means of getting you the assistance you need to get a further education and find meaningful employment. (I am in Wyoming, so I included the link for my state. But, you will have to do a search for your particular state.)

As long as you maintain a C average and keep up with your studies, they will pay for your tuition and books. If needed, you might even get a voucher to help purchase school supplies.

Unfortunately, some clients take that as permission to slack off, even if they are capable of getting better grades. Personally, I always studied hard and did my very best. If I did just enough to get by, I was only hurting myself and my education. I also wanted to improve my chances of employment.

I know it is not fair, but I believe those of us living with cerebral palsy have to prove ourselves. I know people that treat me like my brain is attached to the chair. I also know people with severe CP that are far more intelligent than me. It is just locked in a body that won’t cooperate.

Long story short: go ahead and dream of a brighter future. Strive for your goals. You may be living with cerebral palsy, but that is not who you are as a person.

A couple of days ago, I received a note from a young lady with CP who is not even out of high school yet. She is very concerned about her chances of employment and learning to drive so that she can be more independent.

Actually, I am so excited! She wants to live life to the fullest and take care of herself as much as possible. In this day and age, a lot of able-bodied kids do not have such a healthy attitude about life. They feel entitled, and want someone to hand them everything, without having to work for it.

Although I did not ask her permission to post her questions or my answer, the concerns of this young lady are so similar to the ones I had at her age, I thought it was time to post a VERY helpful website.

For information about employment, transportation, and accommodations for the disabled, you might want to visit http://www.ada.gov/. It has all sorts of information about the Americans with Disabilities Act and so much more.

Today, there are a lot of resources out there for people living with cerebral palsy that want to go to college, get a job, and live as independently as possible. It will take time and effort on your part to check them out, but it is worth it.

I am a divorced mother of 2, and the Department of Vocational Rehabilitation helped me get an education.

Before I got married, I had a full-time job, my own home, and a couple of dogs to keep me company.

I have since learned that there is even help out there, if you need someone to provide transportation to and from work, help you keep house, run errands, and other things, so that you can be as independent as possible, and be a productive member of society.

So, check out the http://www.ada.gov/. You might be surprised what is available for those that want to make the most of living with cerebral palsy.

First, I must apologize! I can’t believe that it has been a week since I have posted anything. Time flies, even if I am not having fun.

I have another funny story to tell you, on myself of course! But, I want to tell you about my thoughts on my Tuesday first.

I had a doctor’s appointment, to check my blood pressure. But, I knew I needed to talk to her about this pain that has been a steady ache for 2 weeks that radiates from my should blade and down my left arm. In fact, if the ache gets intense, even my fingertips hurt. Honestly, I was concerned I had a torn rotator cuff or something. With 2 bad limbs already, I knew I wouldn’t be able to care for myself, if they had to work on my arm.

But, I absolutely LOVE my doctor! It is the first time in 25 years that I have really felt comfortable. So, we talked. She started pressing on my shoulder, and of course she found the real ouchie point! It seems I have bicep tendonitis. Of course, since I use my arms for both arms and legs, it will be a recurring problem, especially as I get older. But, it is not a surgery thing.

I AM SO THANKFUL!

Then, we discussed my care options, including a cortisone shot. I told her I was ready for one today, just to get some relief. I knew I was in for it, when they brought in a consent form! Time to run! Oh! I can’t!

Then, Dr. Breck came in with a 3 foot needle! Okay, that is a slight exaggeration. But, it was long enough to reach through the muscle clear to the joint. In addition, the needle itself was bigger around and was going to punch a larger hole than normal.

Of course, the doctor was very apologetic. She numbed my skin for the initial poke. It was time to create a diversion! So, I told her the story of the attack of the snuggy. While we were laughing together, I hardly felt her sticking that HUGE needle in my shoulder!

The moral of this story is simple. A very painful situation is made a lot easier, when you remember to be thankful and try to have a positive attitude.

So, next time you go to the doctor for your cerebral palsy or anything else, remember how blessed you are to live in a day and age where medical care for this disability is possible. Your doctor may not have all of the answers, but he/she works all day with people that forget to be thankful and only know how to complain. You will be surprised how far a little thanks will go for both of you.

It sure took the sting out of that 3 foot needle for me!

Okay. Two very important things are coming to me in February. If you don’t have cerebral palsy or haven’t talked to me in the last few months, you may not appreciate it as much as me. But, it is a BIG DEAL!

First of all, my new set of ‘pinchy sticks’ are on order! Yeah! My lifeline to independence! Thankfully, my mom uses them on occasion, and had a pair she could loan me for a few days, or I would really be in a pickle. But, still, there is nothing like having your own. Plus these are 4 feet long. Wouldn’t it be amazing if I can reach the top dishes in my cupboards. Believe me! I am going to try!

Next, I have new wheels coming! They will be here on the 25th! Those of you that must use Medicaid or Medicare for your medical expenses know this is a big deal. It practically takes an act of Congress to get new equipment!

Seriousy, my BUTT will be so happy. My current chair is 7 years old and the original cushion gave up the ghost a year or two ago. People at church were even offering to help me buy a new one, it looked so bad! I gave up transferring into the pew-to give my butt and legs some relief, because I didn’t want people to feel bad for me.

I tried to get a new cushion at least, without jumping through all the hoops. But, $400 is a lot of money. So, I bought a cheap substitute. It looks good, but my butt knows the difference! Then, I think some of the gel packs inside must have popped or something. My cushion has some very hard spots.

But, in two weeks-Merry Christmas to me! I will have a decent cushion, brakes that actually work, foot pedals that have a toe guard to keep my spastic legs from bouncing around-something new for me, and streamlined arm rests that will swing away, so they won’t get in my way, when I don’t need them.

Of course, the picture is not exactly ‘my chair’. But, it will be purple-my favorite color. I am so excited! I have lost some weight, and I can tell you that my butt complains every day. I am so looking forward to trying it out! Even though I normally do not enjoy the experience-shopping anyone?

Your turn. Tell me about the tools and equipment that make living with cerebral palsy a little easier. What would be your Christmas in February?

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.

I’m sorry I have not been posting regularly in the last week. To be honest, I have been kinda in a ‘blue funk’ as I call it. Work has been slow and I am more housebound in the winter. I try to be a positive person, but sometimes I let troubles in life get the best of me. I start looking at my glass half empty, and I forget to look at the glass half full.

Sometimes, I would like to say that I had all the answers and that I always remember how blessed I am-REALLY! But, I am only human. I would be lying if I said I never got depressed about living with cerebral palsy or struggling to make a home-based business profitable.

However, I would like to look at life from both perspectives. Since I only know myself well enough, I am today’s example. If you need to pull yourself out of a ‘blue funk’, you can do the same with you own life circumstances. I will start with the half empty on the left and the half full on the right:

My business is slow and frustrating!——–At least I have a job!
My daughter is going to college this year—————At least I have been blessed two wonderful children!
I hate being stuck at home in the winter!—————At least I have a home to be stuck in.

Well, you get my drift. Life is life. Some days are good, even great. Some days just stink and you want a do over. It doesn’t matter whether we have disabilities or not. Everyone has times when they look at the glass half full or half empty.

I admit, I allowed myself to wallow this week. It was not my best choice, but it was what it was. At least you know that I struggle with life too, and I not some artificially happy person that is always going to tell you to ’suck it up’ and put on a happy face all of the time.

Living with Cerebral Palsy is meant to be a site where we can share together-the half full and half empty days. You do not always have to write a cheerful comment.

Yes, I truly believe that I have been very blessed, despite or maybe even because of cerebral palsy. I am very grateful for the people in my life and the things that make living possible. I grew up knowing that I was very loved, just the way I was. I also grew up knowing that God always has my back-if I let him.

This week, I allowed myself to fall in the ‘blue funk’ pit. I am pulling myself back out by reminding myself that it all depends on how I look at my glass. How do you cope when life gets frustrating, to say the least? How do you cope as you live with the daily challenges of cerebral palsy?

When I was 27 years old, I had a tens unit placed inside, with leads up to my spine. A receiver just under the skin on my left side was the place to tape the external unit. A power pack on my belt could be adjusted to send stimulating impulses. The whole idea was to stimulate my spine and send messages that my brain couldn’t.

I must admit, it worked to some degree. I could stand for a few seconds by myself, if I got balanced just right. The biggest benefit was that it relaxed the spasticity in my muscles a little. However, I quit using it after six months, because the benefits weren’t worth the hassle.

If I bumped the power pack and accidentally turned it up, it gave me such a buzz that I would almost be too shocked to move. I would ask people around me to turn it down. In the summer, the surgical tape did not work to stick the receiver to my skin. It kept sliding. Then, the cord always got caught on the seatbelt. Replacing the parts, when it broke-like the cord, was an expense I couldn’t afford on my salary. Since it was experimental, forget insurance.

Today, I read a story about a young girl that was going overseas for experimental stem cell treatments for her cerebral palsy. Like many others, seizures are a common companion. At 9 years old, her family is seeking any kind of relief possible, with the hopes of improving her capabilities.

Kara Anderson and her Mom

However, this young girl has already been through numerous surgeries. So, it is hard to get excited, in the hopes that this will be the miracle she and her family are looking for:

“Kara is a brave girl,” writes her mother in an e-mail from Beijing. “Her ability to continue to smile and work through adversity has always humbled me and also made me so proud of her. She has endured much in her nine years, and while she continues to smile, she has grown wary of doctors and afraid of pain after many tests, procedures, appointments and much therapy.

Personally, I am very leery about stem cell research and treatment. I do not agree with science that creates embryos to save another. I believe in life at conception. If there was some way to use the stem cells of a person old enough to give consent, without doing harm to them, I would be all for it.

Thanks to science, we have a lot of treatments and aids for cerebral palsy that were not available when I was a child. When I had surgery as a child, I spent 4 months in the hospital, often not seeing my family. They simply couldn’t afford to come to the state hospital. Today, children undergoing similar surgeries are kicked out of the hospital in a matter of days. Therapy has become more patient friendly, although still painful, and more.

So, the question for today is: How has science changed your living with cerebral palsy; or, how do you feel about stem cell research?

To read the full article in Get Healthy Magazine, go to To China with Hope.