For the last couple months something about my CP has really been bothering me. I can't figure out if it's just one side, just my legs, all my muscles or what :confused: The thing is, my legs are much more affected than my arms, but my right leg is much more affected then the left. I find it pretty much useless for everything other than walking. My right arm is also much weaker than my left. I often draw both arms up close to my body or cross them, it's very difficult for me to just leave them at my sides, and a lot of the time I clench my fists. I'm trying to figure out if my left side is stronger because it's not affected by the CP or only because I am left handed. I tend to think it's not hemipeliga only because I had both hamstrings lengthened and both heel chords are very tight. If it's only on the right side does it make any sense to have surgeries on the left as well? I really wish that my ortho would have addressed this issue with me, but because I'm not severely disabled everybody just writes me off like there's nothing wrong... now I'm just extremely confused!

What are your thoughts on the matter?

As far as why your left arm seems stronger than your right, I think it's probably a little of both. Everyone has a dominant side that gets more use and that makes it a bit stronger. With the addition of CP, at least in my case, it makes that difference even greater.

In my own case, I get really annoying spasms and drop things when I try to use my left arm and hand for delicate, concentration related activities (i.e. carrying drinks, using eating utensils, etc.) - on the other hand, I can carry groceries and do other "pack mule" type things pretty well left handed. My left leg is about as weak as my left arm comparatively speaking because my right arm and leg are unaffected.

I understand what you mean about the leg feeling otherwise "useless" though, over the last several years I've lost a lot of the muscle tone in my left calf and thigh and as a result it's gotten much, much weaker. Visually, there's a major difference in my legs and I go through long periods of self-consciousness about wearing shorts or even snug fitting tee-shirts. I tend to keep my left hand in my pants pocket if I'm just standing around because my forearm never feels like it's fully relaxed (bicep in partial contraction I guess). My left hand clenches into a fist and the forearm and bicep contract anytime I'm over-exerting my right side, almost like a sympathetic strain -- perhaps that's the reason you feel odd about having your arms at your sides as well?

Self-consciousness is one of the things I have the most trouble dealing with and if I feel like I'm being watched or stared at that's sometimes all it takes for the nervous tension to flood over me and turn my slight limp into a noticeable gait. I can't really offer any opinion as to why both hamstrings would've been operated on since I haven't had any of the surgeries, I'm sure others here can offer feedback on that.

I seem to recall that you're 18 now, is that correct? I'd recommend setting your own appointment with the doctor in question and just ask him all the things you have questions about. Explain that your family doesn't like to discuss your CP and you want to understand as much about your health as possible. It's a reasonable request and I can't imagine any decent doctor refusing to answer your questions. If it's possible, it might be helpful if you could go to that appointment alone so you can set the pace of the questioning. By all means make a list of things you want to ask about and take notes if there's something you want to research further after the appointment.

Last week I filed a request with my former PCP for copies of my medical records and I'm trying to track down my old pediatric records (I have them, I just can't remember where I put them!). I filed the request form, paid $20 for the copy service and received my entire chart in the mail yesterday. It never hurts to have that information as a resource.

Jack

Hey people,
weight lifting... a little at first, then gradully increase. Girls, don't worry about getting big muscles. Try concentrating on the weak side first. Just keep at it! You will get stronger and the spasms will subside. I worked with a trainer for just 1 year. I was 150 pounds and I could lift 350 in a bench press for 10 reps. I even worked on my legs, but they could never stand the 350 plus my weight. My waist was 32 inches and my shoulders were 44 inches around. This was 10 years ago. I was 44. My current weight is 180 and my waist is 34. I doubt if I could lift my weight 10 times now though...

Exercise is the key. Don't sit around and let your spasms get worse, because your good muscles are getting weaker

Jack, I am 18 and I've been thinking about setting my own appointement with my surgeon for a while. I think I'll do that this week. The difference in size in my legs is pretty noticable, especially because my left side overcompensates for my right. I try to build my right leg up, but whenever I do exercises it seems my left side always takes over. I don't get that self concious unless I know someone is staring at me. I try to walk "normally", but that just stresses me out and my limp gets even worse. I end up looking pretty ridiculous trying to walk!

I haven't had too many spasms since I stopped training for this 6 mile walk I did for the March of Dimes, but just today my left hand was going out of control (there I go with the left side again... I'm so confused!). I think it's because I started this new job, in which I have to do a lot of filing. It seems to be the repetitive motion along with the muscle exhaustion that sets off the spasms. I've also noticed that if I keep my arms/legs in an unusual postition for a long period of time and then try to move them I get spasms.

Musicmaker- are there any special exercises you do in your workouts? I try to build up my right side, but my left side always takes over. Even if I'm only working with weights on the one side, the other side starts straining and contracting as well and then I end up with a buch of pulled muscles. I'm actually thinking about getting a personal trainer or getting back into PT when I start college in a about month.

As I was reading through the "battling fatigue thread, I decided to look into the Wheeless' Textbook of Orthopaedics and I came across this

- diplegia: pts have more extensive involvement of the lower extremity than the upper extremity;
- most diplegics will eventually walk;
- IQ may be normal, strabismus is common;
- gait is typically characterized by a crouched gait, toe walking, and flexed knees;
- heel cord lengthening alone may exacerbate crouched gait;

That sounds like me. My legs are worse than my arms, as I have stated. I had 2 surgeries to correct my strabismus, and before I had my hamstrings done I was unable to straighten my legs, thus making me walk in a slightly crouched position. This still doesn't help me with the left side... I'm going to see if I can find out more. Diplegia doesn't affect both sides, does it? :confused:

JellyRJFan,

hemiplegia refers to one side of your body like your right arm and right leg. Diplegia refers to both arms OR both legs. You'll find that a lot of people have both legs involved, and the weak side will often include an arm and hand involvment. I have both legs involved and my right side is weaker than my left side. I am left-handed, but so are my father and brother. I did not suffer a head bleed when or before I was born. I was 2 1/2 months premature, and I weighed 2 pounds 8 ounces. I was put in an incubator that contained pure oxygen, a real bad thing for newborns, for 6 weeks...
If you can't tollerate exercise on you weak side, BOTOX might work for you, and help you tollerate the exercise better

You'll find that a lot of people have both legs involved, and the weak side will often include an arm and hand involvment.

that explains so much, thank you!

My twin sister and I were born at 29 weeks. She was placed in an incubator on oxygen for a month or so, while I was not. I have heard it's common for one twin to have CP and the other to have respiratory difficulties, which is the case with us.

I'm planning a visit to my doctor soon, I'll ask about the botox! :)

*Hijacking for a moment*

Strabismus!!! I just looked the word up, so THIS is why if I wore contacts my eye would turn in! My eye doctor said I would most likely grow out of this in 2-4 years (I'm 18), but I don't know, it sounds like an effect from cp, so will I grow out of it? Anyone in the same situation?

Is this also called "lazy eye?" If you've had it since you were little, it's probably permanent by now. It has to be treated when you are younger. By 18 you're out of luck

Yep, I had a lazy eye. I started to wear glasses when I was two which corrected it. As of now, if I wore contacts my eye would turn in again. The eye doctor said I'd probably grow out of this problem within 2-4 years and be able to start wearing contacts. I was just wondering if having cp would complicate this problem so that I would never grow out of it, since cp is of course permanent. But judging from your response maybe the problem CAN be solved in 2-4 years. Wow, that might not have made sense to anyone but me...

I don't have a "lazy eye" but I have a friend who is small for a man (5'1") and he has a "lazy eye" that doesn't see any more. He is 53. The brain will turn off the "lazy eye" if it is too far out of alignment from the other eye, in time.

I wear soft contacts, and I can wear them continuously for months, cleaning them once a week, taking them out for 24 hours. I am 54. My friend and I have Spastic Hemiplegia CP. My friend was born at 2 pounds 4 ounces, I was 2 pounds 8 ounces. I am 6 feet 1 inch tall...

I wear contacts now, but I'm not sure if I need them because of the CP or just because I have bad eyes. I had 20/20 vision until I was about 12 or 13, now it's like 20/90!

JellyRJFan,
I was 13 when I started to wear glasses. My contact power is left -6.00, right -7.50. I use whats called "monovision" where one eye is set for distance, and the other is set for close vision. Remember, I am 54. You young people have a way to go before you have to worry about reading glasses, like us old folks do. I don't think there's a real connection between CP and vision problems, other than that "lazy eye" thing. My brother and father are nearsighted like I am. They do not have CP...

My brother and father are nearsighted like I am. They do not have CP...

LOL, that reminds me of the time when my uncle came to visit a long time ago, and we all turned around and he said all he saw were glasses....my whole family (immediate) is near-sighted

I just made an appointment for July 27th... hopefully I'll have some answers soon! :)

:) Let us know.

Good luck with the appointment!
Jack

I just got back from my appointment and I am thrilled with how it went! I got a referal for the botox doc at children's hospital and I am going to start PT again. I also found out that I have spastic quad. CP, I never really thought about that, but it feels like a weight has been lifted off my shoulders now :) The only bad news is that I have scoliosis in addition to the lumbar lordosis I developed after I had my tendons lengthened. Overall I am really happy right now!

That's great news :D Now you have more options about what you want to do. What is lumbar lordosis?

I don't know how to post a picture on here, but it's like when your lower back kind of curves like a C. I think it's because my hamstrings are really tight and my knees hyperextend (a result of the surgery).

It's like if a normal back looks like this: |
someone who has lordosis' back looks like this:
\ facing ---> this way.
/

ok, this is really confusing me, let me go find the definition!

ok, hopefully this explains it better than I can.

"The spine is made up of stacked bones called the vertebrae. They are arranged in three natural curves that are necessary to keep your body supported. In a healthy spine the three curves are:
* cervical, the curve inwards at your neck,
* thoracic, the curve outwards in the middle, and
* lumbar, the curve in the low back.

Look at a person from the side and you will see these natural curves.

When the lower curve is too far in, so a person looks "swaybacked", we call this condition lumbar lordosis."


"Lumbar lordosis may be caused by tightness of the hip flexors and elongation of the hamstrings resulting in an anterior tilt of the pelvis. As a result, an over-exaggerated curve is seen in the lower part of the back, or lumbar region."

Thanks for looking into it for me :) The definition gives me something to look for, now I will go find a normal spine and compare it to mine, since I am a visual learner.

Glad you got the information you were looking for, peace of mind helps more than anything else sometimes. I'm surprised you're being referred to a children's hospital for the botox therapy though, I thought they stopped seeing people when they reached 18?

I'm not all that surprised about the scoliosis. Muscles function in antagonistic pairs to move the body (like bicep vs. tricep) so considering the disproportional lateral strains we get with CP it seems to me that we'd all (or mostly all) be at a higher risk for developing scoliosis to some degree. Mine started getting noticeable in my late teens to early twenties, I'm now thirty-seven and had definitive x-rays last week that show it's gotten more advanced so I assume the hemiplegia has been a major, contributing factor in that. The chiropractor/orthotics doc I went to asked if I wanted him to treat it but I told him my primary concern was lower back and leg pain and we need to focus on that for the time being... I'm still not crazy about chiropractors in general and I'm not ready to start some year long therapy with someone that I had to explain what hemiplegic cerebral palsy involved :rolleyes: .

Keep us posted on how everything progresses with the botox therapy. Glad you got some info to help plan out your future healthcare!
Jack

You're so right Jack,
about the antagonistic pairs of muscles in the human body. When I was little I was able to straighten my knees, but not bend them. I could point my right foot out, but not bring it back to straight.

"Lumbar lordosis may be caused by tightness of the hip flexors and elongation of the hamstrings resulting in an anterior tilt of the pelvis. As a result, an over-exaggerated curve is seen in the lower part of the back, or lumbar region." This is exactly what I have. I had both my hip flexors and my hamstrings surgically altered when I was 8 years old...

I imagine that the Botox treatments can aid in allowing stretching of spastic muscle groups, but pinpointing the exact area to inject has to be very difficult. In my experience, no matter how much treatment, thearpy or surgery a person endures, there will only be so much gain and no more. As a child grows and develops, this is the most important time for improvement and stability. After 18, most will concentrate in maintaining strength and range of motion. At Jack's and my age, pain management becomes important too.

I was surprised too, but maybe this doctor has more than 1 place he practices out of. I was actually quite shocked when he said I had scoliosis, because I've been tested for it a number of times and no one ever mentioned it to me. In fact, the last time I got my back x-rayed I had "the straighest back in the world" hahaha! Luckily he said he doesn't expect it to get much worse. That's a very interesting point you brought up about the antagonistic muscle pairs, I never really thought about that before.

With the assymetrical anatomy I've often wondered if there was some way to develop a workout routine that would target the exact muscles that were weaker and maybe ease off some of this back pain. The scoliosis is slowly getting more pronounced and I'd like to work on correcting that or at least slowing its progress as much as possible. I would imagine that some of the muscles on my left side might actually be stronger than the muscles on the right (due to constant contractions and spasms) so a strict left side only workout probably wouldn't be the answer.

I've got a fairly limited understanding of anatomical structure when it comes to individual muscles, what exact movements they control and how to isolate them. Has anyone else managed to come up with a workout plan that targets precise muscles in terms of equalizing symmetry (like in the back, lats, etc.)? I'm interested in who would be the best people to get advice from on that. The PTs that I've dealt with have been good at their jobs but I don't think they had much experience with physiques like mine and the trainers at the local gyms here are more like store clerks on steroids so I doubt they'd be much help either.

I completely agree about the pain management. I've been going to a PM doc since February for chronic pain from the back injury and the CP is making a full recovery difficult and unbearably painful at times. I know growing older means more aches and pains but I swear the CP makes that even worse.
Jack

I don't know how to post a picture on here, but it's like when your lower back kind of curves like a C. I think it's because my hamstrings are really tight and my knees hyperextend (a result of the surgery).

It's like if a normal back looks like this: |
someone who has lordosis' back looks like this:
\ facing ---> this way.
/

ok, this is really confusing me, let me go find the definition!

I think I may have this. Does your butt look like it is contstanly sticking out? (serious question)

Christine

It says here that "An imbalance in trunk muscle strength can influence significantly lordotic curve of lumbar spine and might be one risk factor for potential low back pain". I found this interesting since Jack mentioned antagonistic muscle pairs and assyemtrical anatomy earlier.

Christine- Yes. I found this in response to your question "When found in the lumbar spine, the patient may appear swayback, the buttocks more prominent, and in general an exaggerated posture. A lumbar lordosis can be painful sometimes affecting movement." :)

"When found in the lumbar spine, the patient may appear swayback, the buttocks more prominent, and in general an exaggerated posture. A lumbar lordosis can be painful sometimes affecting movement."

Yes Christine, your butt sticks out more than someone elses, and if lumbar lordosis is not painful, you might find that your back gets tired faster while standing, and begins to hurt after standing for a time...

"When found in the lumbar spine, the patient may appear swayback, the buttocks more prominent, and in general an exaggerated posture. A lumbar lordosis can be painful sometimes affecting movement."

Yes Christine, your butt sticks out more than someone elses, and if lumbar lordosis is not painful, you might find that your back gets tired faster while standing, and begins to hurt after standing for a time...

Its nice to know there is a definite cause for this problem. Its not really a problem (yet) I just don't like how it looks

I kinda thought this problem might have something to do with the tightness of my pelvis. My lower back also does seem to ache more if I am standing, but the odd thing is that my lower back hurts the most when I am laying on my stomach on the floor watching TV. I guess it is too much muscle strain.

I do know that if I try to pull my knees to my chest (while laying on the floor), and get someone to press my knees into my chest. It does make my back feel good. The only problem I have with this is that in order for my back to feel the full strech I need someone to help push my knees in, if I do it my self I hardly feel any stretch. I wish there was some way to do this type of stretch on my own

Christine

I haven't been able to touch my knees to my chest since before my last knee operation at age 11, but it does feel good to raise my legs into the air lying on my back. I have always been physically active doing things like weight lifting, swimming and marathon wheelchair pushing. All these things plus playing wheelchair basketball for 10 years has helped me maintain good upper body strength and a strong stomach, that really helps to support my lower back... Even now at age 54. My 53 year old friend with the grooming and hygene problem, actually has always had more mobility than I have, but he's in poor physical condition now

I just got back from PT, she gave me a bunch of stretches to do for my back and hamstrings. She mentioned the one similar to the one you were talking about, musicmaker (lying on your back and raising your legs in the air), but I don't think I'm able to do that at this point. She told me swimming is really good for stretching most muscle groups and that I should start up again (I used to compete). The lower half of my back is tight on the right side and the upper is tight on the left, this would explain the scoliosis!

Jack, she said the muscles around my collar bone are so tight that my left shoulder can barely move and that I hold my right hip higher than the left. I think I remeber you talking about how one of your hips is higher than the other... is there anything special you are doing to correct this?

Gosh, I've had more doctors appointments in the last 2 weeks than I have in the last 2 years and everytime I find out something new... it's a bit overwhelming, hahaha!

The lower half of my back is tight on the right side and the upper is tight on the left, this would explain the scoliosis!

Jack, she said the muscles around my collar bone are so tight that my left shoulder can barely move and that I hold my right hip higher than the left. I think I remeber you talking about how one of your hips is higher than the other... is there anything special you are doing to correct this?



The muscle tightness you're talking about is much like what I'm going through. Between the spasticity causing contractions in some muscles and my strong side having to overcompensate it's difficult to know exactly which muscles are pulling harder on my spine. I know the muscles that run on either side of my spine (over the kidney area) generally stay rock hard... explains some of the lower back pain and since I do almost everything right handed, that side of my upper back is overdeveloped - scoliosis was bound to creep in.

My x-rays show a hip offset of 9 to 12mm but because my ortho surgeon harvested part of my RT iliac crest for use in my lumbar fusion the pelvis looks even worse. I was at the PM clinic last Friday with my wife and the doc called to say my orthotics (insoles) were ready. He was on his way to the clinic for another fitting anyway so I just met him there and settled everything up. These insoles are custom moulded to my feet and help to correct for both the hip offset and a weak left ankle that lets my foot tilt inward (7 sprains since '91 haven't helped my ankle strength and I lost more of it in my first back surgery). I'm not sure I fully believe everything the orthotics guy has been telling me so I plan on taking a copy of those x-rays when I go to my ortho appointment next Monday. I want his opinion on what needs to be done and if the heel lift is where it should be.
Jack