My final post on CP Awareness, for now. Enjoy! 🙂
When most people think of treatment, they think of doctors and hospitals and needles and miserable, ongoing physical therapy sessions. That’s not how I remember it.
My earliest memory as far as treatment, I was four or five years old. We were at Shriner’s Hospital, where we spent a lot of time when I was growing up. But it wasn’t what you’d think. Not what you see in the movies. I wasn’t miserable, not at all. It was fun! The nurses were nice and talked to you at your level. There was a rec room and lots of other kids to talk to and play with. And none of those kids thought you were ‘weird’.
This particular time, we were out in the yard of the hospital, and there were clowns and games, and the WSU football team was there. I only remember pieces of it. But I remember it was fun. I remember someone from the local newspaper was there and they took my picture.
I’ve had surgery three different times, totaling 10 incisions. Surgery is performed on children with CP that have severe muscle contracture. They cut the shortest fibers of the muscle, to lengthen it. For me, and many other patients, this meant my heels touching the ground instead of walking on my toes, being able to (almost) straighten my legs, and being able to stand up straight, instead of being bent at the hip. To reduce pain and sensitivity, sometimes causing numbness, they might also cut the nerve.
The first time I had surgery I was two years old. It was to lengthen the Achilles tendons on both legs. I don’t remember it, but I’ve seen pictures of the bulky, plaster casts that went all the way up my legs, as well as the big blue foam bumpers that went around them to keep the casts from knocking together and breaking.
I remember the trips to Shriner’s, about two hours away, to assess treatment. Sometimes it was just me and my mom, sometimes my little brothers came too. I loved the little road trips. I’d ride in the front seat with my pillow and blanket and 20 of my favorite stuffed animals; mom would stock the car with donuts and snacks. When we got there, the doctors would pull my legs up and down and watch me walk and test my reflexes. It was all to evaluate the locations and extent of my impairment, in order to plan treatment options. When they were done, we’d go out to the swing set or to the rec room and play games. Then it was back home.
The second time I had surgery I was five. It was during kindergarten, and I remember returning to school in a wheelchair. Again, it was on both Achilles tendons, and the casts went all the way up my legs. I remember all the kids being fascinated with the wheelchair, and that they could write on the casts. On one occasion, my teacher, Mrs. Herald, who was probably in her 50’s, wanted all the kids to lay on the floor and read. She told me I could sit at my desk, but I wanted to lay on the floor with all the other kids. Instead of brushing me off and telling me I couldn’t, she picked me up out of my wheelchair herself and laid me on my stomach on the floor. The whole class laughed at the sight of her carrying me, but I was glad at the opportunity to do the same thing the other kids were doing.
The last surgery I had, I was ten. They did it during the summer, to minimize the amount of school I would miss for recovery time. This surgery was more extensive; they were lengthening my left Achilles, hamstrings on both legs, and my left hip flexor. In the hospital, I had a roommate that was about my age. Her name was Savannah, and she was having surgery for club foot. I had never heard of that before, and she tried to explain it to me, but I didn’t really understand. It was fun to have another girl my age there to talk to and play games with. Someone who could really relate.
After we went home, having to recover during the summer was hard for me. I loved to swim and ride my scooter and play baseball with my brothers during the summer – none of which I could do with the casts and splints and stiches. I remember getting my feelings hurt when my family decided to go to the local indoor pool to swim, even though I’d have to sit there and read. Didn’t they know how much I loved swimming?? Nights were long; I had to sleep in the splints, which meant keeping them straight all night long. The left leg would hurt under my knee from the stretch of my hamstrings. I used to push the splint down carefully, just enough to bend my knee a little (Shhh! Don’t tell my mom!). But mom stocked me up with books and puzzles and things I could do until I was recovered, and even bought me a little Vtech lap top so I could play games. During my recovery we took a trip to Seattle to visit my grandparents, and we all stayed at a resort. There were lots of things I could do in my wheelchair, like play games in the rec room or mini golf. There was a beautiful pool, and I was really disappointed that I couldn’t swim in it. So my mom waited until it was getting dark and the pool was empty. She got in and told me to sit down at the edge. Then I laid on her hands, and she floated me around on my back in the water. I’ll always remember how cool I thought my mom was for doing that. I’ll also remember the half cantaloupe filled with ice cream she gave me for breakfast the next day (that she didn’t give my brothers).
I started school that year still in casts, splints, and a wheelchair. It was a little difficult, but accommodations were made, and my teacher was really nice. At home, my best friends and I decided to put on a neighborhood talent show. We liked to do dance routines (and the Macarena ) and put on shows. I didn’t have to have the splints on anymore, and I was able to walk in the cast and practice routines. We picked Saturday the 23rd, the day after I got my cast removed, as a celebration for cast removal. To my surprise, it was a lot harder to walk and jump with the cast off than with the cast on. My ankle was really weak. The support of the cast made it easy, but without the support, I almost fell every time I took a step. But we had spread fliers around the neighborhood and knocked on doors, and there were a lot of adults coming to watch and a lot of kids coming to participate, so we couldn’t change the date now. It was difficult, and probably pretty obvious that I was having trouble, but we did it. And with the $5.00 we got from charging admission, we rented a movie loaded up on candy.
Therapy was another major form of treatment for my CP. I hear people talk about how they hated the painful therapy sessions, but that’s not how I felt about it at all. During school I had therapy once a week. The physical therapist would come and get me out of class (yesss!) for a half hour. The physical therapist I had during elementary school, Bridgette, really impacted my life. She turned the stretching and balance exercises into games, and more importantly, she never let me say “I can’t”. She would prove that I could, if I didn’t give up. Today, when I hear myself saying I can’t, I hear her voice reminding me not to say ‘can’t’. That I can, but I have to keep trying; find another way. She ended up starting her own children’s therapy business. Through that I got to do a lot of things that ‘other’ kids got to do, like dance and Tae Kwan Do. She ended up moving to Seattle, and we lost contact, but if I could see her today, I would thank her.
I also did horseback riding, known as Hippotherapy, and swimming therapy. Hippotherapy benefits because of the effect the horse’s movement has on the person. Swimming therapy’s main benefit is that the buoyancy of the water makes the person almost weightless, so it is easier to move and exercise without putting harsh strain on the bones, joints, and muscles.
Another form of my treatment was leg braces, or AFO’s. I think I was about four years old the first time I got them. I hated them. One of my best friends has Spina Bifida, and she loves her braces. And I know of others that love their braces, but I have always hated them. I remember them feeling uncomfortable and restrictive, and that they always pinched my legs when I sat in the plastic chairs at school. Not to mention how ugly I thought they were. I felt like I looked like I had robot legs. Especially with the giant shoes I had to wear to fit over them. I always tried to get out of wearing them, and sometimes my mom caved and I didn’t have to. The last time I remember having them as a kid I was nine or ten. My poor mom; I probably complained so much that she just didn’t push it anymore.
For children, there are many treatment options, including the ones I talked about above. There is also speech therapy, for children whose CP affects their ability to speak, eat, or swallow. Muscle relaxers are prescribed to patients who have severely contracted muscles. Occupational therapy, similar to physical therapy, is mostly for those that have trouble using their arms and hands. There are also newer treatments, like Botox injections to ease contracture on a longer term, and new discoveries with cord blood and stem cell treatments that are actually making some symptoms disappear! Unfortunately for me, these new discoveries have so far only worked on young children.
I moved to California when I was 13, and there wasn’t any treatment after that. I tried to seek out treatment as an adult when I turned 18, but nobody seemed to know what to do with me. A big issue I have encountered, and a lot of why I write this blog, is that there is not enough information or treatment options for adults with CP. Once you’re 18, Shriners (a children’s hospital) doesn’t help you, and doctors don’t know what to do with you. Research online only finds information on ‘your child with CP’. My problem is this: Children with CP turn into adults with CP. It doesn’t go way on your 18th birthday, but your options for treatment seem to. Why isn’t there more information, knowledge, and options for us?
Soon after my 18th birthday, I went to an orthopedic. He measured the tightness in my legs and said “Yeah, you have contracted muscles.” When I asked him if there was anything we could do about my obviously in-turned knee, a brace or something, he said he didn’t know what I was talking about. Other orthopedics wouldn’t even see me; they said something had to be broken or sprained for them to see me.
With no insurance, I gave up. When my pain and weakness got pretty severe while I was working at the bank, where I had insurance, it was time to try again. My regular doctor helped with some medications and a referral for physical therapy. The therapists were nice and they worked hard to help, but even they didn’t seem to know much about CP. It was my idea to get a wheelchair when nothing seemed to really be working, and the wheelchair helps, but I still wonder if there’s a way I wouldn’t have to use one. If maybe had treatment continued, I’d have had another surgery. If maybe I could make up for it now.
My doctor also referred me to a therapy and CP specialist about 4 hours away (at a children’s therapy center) who agreed to see me, even though they don’t treat adults. She told me I needed AFO’s, so she fitted me for them and had them made. Honestly, I hate them as much as I always did. I thought as an adult I wouldn’t, but I do. They’re still restrictive and uncomfortable, and my feet hurt around the middle of the day. When I wear them, even for long periods, I don’t feel much of a difference. Admittedly, I don’t wear them as often as I should.
Now, on disability, I don’t have any medical insurance. I’m not eligible for Medicare until I’ve been on disability for 24 months. So I pay out of pocket for doctor visits and monthly prescriptions. I hear Medicare doesn’t cover much anyway.
One of my goals, friends, is to change the issue of finding treatment options for adults. My friend with Spina Bifida has encountered the same problem. CP and SB seem to be considered childhood diseases, but they are life long. We want more than just “Here’s a wheelchair and some pills; good luck.”
I would like to see more research being done and more solutions being implemented. Is it silly of us to expect more? To my readers with CP and other disabilities, have you had the same problem, or what treatment solutions have worked for you?