Hi! I have a quick question. I am almost 28 with spastic cp. I am getting more spasms, falls, bursitis of my knee. I have felt the need to start streching and going back to physical therapy to help with pain, ect. Am I crazy.. Has anyone ever done this?:confused:

I think that's fairly common!

I think that's fairly common!

Thanks! I am glad to hear from you:wave:

Hi...my son (21) also has spastic CP; he received PT from ages 4-7, but has recently started again due to contracture of his right arm. It's really been of benefit to him, and he actually enjoys going. They're working on stretching and strengthening his arm and hopefully he'll be able to avoid surgery. So far, so good! Sue

I've started again because of the Baclofen pump that was placed six weeks ago. In fact, I am in the hospital right now for five days for what I thought was going to be more intensive P.T. (versus three hours a week outpatient). I'm lucky to be getting 2 hours a day, and my copay is $500 a day, $3,000 max out of pocket. I am so disappointed and want to go home, but I'll stick it out two more days. We have made good progress and the pump flow has been adjusted twice, but I expected so much more.

Once I'm out of here, my wife and I need to figure out a way to get me an hour of P.T each week - even if it's a cash basis - before all of my outpatient P.T. insurance benefits are used up. One thing that has contributed to this is going for so many years without consistent P.T. (due to insurance only covering so many visits). We plan to turn the front bedroom of our house into a therapy/work out room. We have a lot of free weights we use, but we need to get a therapy table for my wife to stretch my legs and arms on. Our bed is too soft to get the most beneficial results, and she loses her footing a lot.

~66~

I just got a script from my CP sepcialist for PT three times a week for five months...

I havent dont PT in years. Im a bit worried - because when im stretched - I seize..:blob_fire

And not to mention the pain from my Spondelythesis...

Im just worried..

The CP Spec. said my legs are at a 90 degree angle or something when I lie down and he tried stretching..

Sigh

Amber and SD Quincy:wave:

As part of my masters I studied aging in CP's.

I have read several studies of the long term effects of CP. I m 50 now and don't expect to make it to 65. I have lost so much function. We have a shorter life expectancy we simply wear out quicker. I have arthritis and other joint problems caused by un natural wear and tear. I have lost so much function, over the last 6 years that pt wouldn't be any use.

Problems we expwerience are a lot like post polio syndrome.

We have a shorter life expectancy

Why? I can understand CP causing arthritis, but I don't see how that equates a shorter life expectancy. Unless you mean in terms of inactivity, and the inactivity causes weight gain, which causes heath problems...:confused: How exactly do you conclude the shorter life expectancy

I am a 46yr old female with cp since birth and what u are experiencing is quite common.I had not had pt since the age of about 9 when sent to a "normal" school. Since then I have worked full time,married a able-bodied man (27yrs ago) and have 2 children a 26yr old son who has left home and a 16yr old girl, I also have custody of my 5yr old granddughter. So as u see I have no time to slow down. Since heading towards the age of 30ish I felt my body siezing up and my movements became more jerky and had less control over co-ordination. Physio here is not cheap around $40 per treatment ($80 your money) we can't get public health physio unless there is another cause such as an injury etc and even then believe me u wouldn't want to go. What I found was massage to loosen the muscles has done me more good than physio and is cheaper. I went to 3 physio treatments just to catch up and relearn the same old exercises I use to know,now i just do my exercises when i remember (hardly ever) and rely on my massages. I'm lucky my 16yr old daughter has learnt to do it so its free, so hopefully u have someone u can ask. I paid for her to do a course in massage and even with the cost of the course it has paid for itself many times over, if u can't afford a course most decent masseurs don't mind someone going in with u to watch -at least they don't over here. Sometimes especially after a bad fall my lower back siezes and the odd trip to a chiropracter helps, I've been maybe 5 times in 10yrs. Suppose I shouldn't say this but if u r ever paying for any type of treatment listen to your boldy I've lost count of the number of times I've been told i need to come back and come back and come back and looking back I could have saved a lot of money because I wasn't actually gaining anything from the traetment just doing the same old, same old week after week, Don't ever expect the pain to go completely cause it won't and some days are bettter than others but overall its gotten me by. I've just reached the stage where I can't get off the ground unassisted cause my knees have gone,which is a bummer but I'm working on a few stratagies. As for a life expctancy of 50, I DON'T THINK SO. I have also done a lot of research on cp and also work in the area of disability care and believe me providing u keep as active as u can in body and mind u have just as much chance of reaching a ripe old age as any one else. Last yr I dikd a 4 week holiday in new zealand in a campervan with 2 other adults and 3 kids and went bungy jumping. My doctor just rolls his eyes back and tells me to keep on doing what i do cause something is working. Hope this helps, good luck and let us know how u go, and always remember cp is a condition not an illness. BTW its thw middle of winter here 25degrees and I'm off for a picnic with the kids - life's tough ain't it.

I've just reached the stage where I can't get off the ground unassisted cause my knees have gone,which is a bummer but I'm working on a few stratagies. As for a life expctancy of 50, I DON'T THINK SO. I have also done a lot of research on cp and also work in the area of disability care and believe me providing u keep as active as u can in body and mind u have just as much chance of reaching a ripe old age as any one else. Last yr I dikd a 4 week holiday in new zealand in a campervan with 2 other adults and 3 kids and went bungy jumping. My doctor just rolls his eyes back and tells me to keep on doing what i do cause something is working. Hope this helps, good luck and let us know how u go, and always remember cp is a condition not an illness.

That's awesome that you do all those things. And I agree with you, I don't see how having tight muscles and joint problems would nessecarily mean you'll die early...unless you get depressed about decreasing ability and do absolutely nothing. Although I did see a story about a 17-year-old with CP on one of those medical shows...his CP was so severe and his body so contorted with tightness that his stomach couldn't work correctly anymore. But for the most part, I think it depends on your outlook on things...I hope I'll be like you when I get older :)

I am a 46yr old female with cp since birth and what u are experiencing is quite common.I had not had pt since the age of about 9 when sent to a "normal" school. Since then I have worked full time,married a able-bodied man (27yrs ago) and have 2 children a 26yr old son who has left home and a 16yr old girl, I also have custody of my 5yr old granddughter. So as u see I have no time to slow down. Since heading towards the age of 30ish I felt my body siezing up and my movements became more jerky and had less control over co-ordination. Physio here is not cheap around $40 per treatment ($80 your money) we can't get public health physio unless there is another cause such as an injury etc and even then believe me u wouldn't want to go. What I found was massage to loosen the muscles has done me more good than physio and is cheaper. I went to 3 physio treatments just to catch up and relearn the same old exercises I use to know,now i just do my exercises when i remember (hardly ever) and rely on my massages. I'm lucky my 16yr old daughter has learnt to do it so its free, so hopefully u have someone u can ask. I paid for her to do a course in massage and even with the cost of the course it has paid for itself many times over, if u can't afford a course most decent masseurs don't mind someone going in with u to watch -at least they don't over here. Sometimes especially after a bad fall my lower back siezes and the odd trip to a chiropracter helps, I've been maybe 5 times in 10yrs. Suppose I shouldn't say this but if u r ever paying for any type of treatment listen to your boldy I've lost count of the number of times I've been told i need to come back and come back and come back and looking back I could have saved a lot of money because I wasn't actually gaining anything from the traetment just doing the same old, same old week after week, Don't ever expect the pain to go completely cause it won't and some days are bettter than others but overall its gotten me by. I've just reached the stage where I can't get off the ground unassisted cause my knees have gone,which is a bummer but I'm working on a few stratagies. As for a life expctancy of 50, I DON'T THINK SO. I have also done a lot of research on cp and also work in the area of disability care and believe me providing u keep as active as u can in body and mind u have just as much chance of reaching a ripe old age as any one else. Last yr I dikd a 4 week holiday in new zealand in a campervan with 2 other adults and 3 kids and went bungy jumping. My doctor just rolls his eyes back and tells me to keep on doing what i do cause something is working. Hope this helps, good luck and let us know how u go, and always remember cp is a condition not an illness. BTW its thw middle of winter here 25degrees and I'm off for a picnic with the kids - life's tough ain't it.

Rock on! That was a very inspiration reply. Thanks for sharing.:D

OK I have a doctors appointment today. The similarities between CP aging and post polio is an interesting one we grew up miss using our the way our muscles work, using one muscle to control another. The theory I am working with is that I need to conserve what ability I still have. I went from walking everywhere to an electric chair about 5 years ago. At the moment I go on a 2 week drug therapy every 6 months ust so mmy body gets a rest and a chance to heal. I have increased pain due to muscular problems over time I wear a lycra shoulder splint in an attempt to stop the muscles tearing the shoulder and thumb out of the sockets and fully dislocating. I ache most of the time I am conscious I don't know of too many cp's over the age of 65. Most CP's are dead by then. Of the 4 friends with CP I grew up with who were my age, I am the only one still alive I made it to 50, and have I reckon 110 more years left. Studies show that we die young
If you don't believe me here are what some internet sites say:



http://www.dbpeds.org/section/fall_2000/hoffman_2000.cfm
"Life expectancy beyond age 15 years was only 7.8 more years for persons both unable to lift his head and tube fed. If one was able to be fed by others but still unable to lift one's head, then life expectancy was 11.3 years beyond 15 years of age.

Strauss et al (1997) using the same data set as their report on life expectancy of adults with cerebral palsy, and the UCP Research Foundation (1995), using data from death certificates provided by the National Center for Health Statistics/USPHS for the year 1987, addressed the cause of death in persons with cerebral palsy. This is of particular interest since the assumption generally is that severe motor impairment resulting in poor mobility and poor feeding skills also place one at much higher risk for death from respiratory compromise and aspiration. Indeed, respiratory causes underlie 15 to 45 per cent of deaths, a wide range due to the imprecise nature of data collection. Another large category was circulatory system or heart disease."
http://www.intelihealth.com/IH/ihtIH/EM/9339/10431.html
'The outlook for people with cerebral palsy depends on the severity of the cerebral palsy. Some children have only mild problems in muscle tone and no problems with daily activities, while others are unable to purposefully move any part of their body. In people with severe cerebral palsy, motor problems often lead to medical complications, including frequent and serious infections, severe breathing problems, feeding intolerance, and skin breakdown. These medical complications can lead to frequent hospitalizations and a shortened life expectancy. With support and treatment, though, many people with cerebral palsy can live healthy, happy lives. "

More info can be found at.....
http://64.233.167.104/search?q=cache:znoIipz2LjUJ:www.scope.or g.uk/downloads/action/publications/cp_exec_review.pdf+life+expectancy+Cereb ral+palsy&hl=en&gl=au&ct=clnk&cd=24&client=firefox-a

I empathise with All Buggered Up, yes its true that some people born with cp also have other major health problems and these problems may or may not lead to a shorter life span. However the starter of this thread what asking was it normal to have to restart pt etc at the age of 28, she didn't strike me as someone with severe cp. The other thing to consider is that the treatment and knowledge of cp has come a very long way since we were 28 hopefully the 28yr olds of today won't need to be in wheelchairs at 50. One big plus is the understanding that we need to keep our upper body straight especially those of us in wheelchairs as being hunched over all the time is the major cause in respritory weakness. BTW thanks to those who read my previous thread but inspirational i am not, i am a firm believer of living life to the fullest and will continue to do so, but please understand it does come at a cost to me body, i have a compacted spine because of my walk, i've had to have some of my right shoulder blade removed to stop tearing and dislocation, this has meant a loss of what they call fine finger movements but i've learnt all that means is finding other ways to do things, my knees are cactus due to the number of falls i've had and the fact that 4 yrs ago i managed to dislocate both at the same time while trying to roller skate. Should have seen me trying to toilet bathe, clean cook etc it would have been a great video for that tv show they have, lost count of the number of times i fell out the damn wheelchair. My speech is affected so i sound like i'm tipsy which has been a challenge at times. Most important of all is I've had and survived cancer..and that was definately not cp related but the hardest to recover from. Sometimes we pay a little to much attention to other people including "experts" and not enough time proving them wrong. just get out there and live life who cares at what age we die so long as we die laughing.

New Zealand for the win!

Anyway, I hate PT. Although my new physio is really cool, ever since I was around 2 until I was around 4, I screamed during the physio sessions that I had. I get stretched twice a week, but the actual PT actually only comes every few months.

I've lost some mobility over the last couple of years. All my rl CP friends I know use chairs and get stretched/use crutches for excercise, I guess it all comes with age. I see myself in a chair most of the time by the time I'm in my early 20's, just because it would be way easier for me.

Maybe that's a pessimistic way of thinking, but I choose independence over being able to walk

Hello,
I am 25 and just asked my Doctor to help me find a PT. So I am walking this road with you. I never thought in a million years that I would have to do PT again.

Wow... you guys are awesome. I receive a great deal of encouragement from your experiences (especially Aussiegirl!). I was released from the hospital after four days, and my doctor there realized there was no point in keeping me another day. My wife is doing a tremendous job of stretching me every evening, and it's part of our routine now though it takes nearly an hour. Between the Baclofen pump and stretching, I am definitely noticing a difference for the positive (3 weeks ago I couldn't say that). I'm learning that this is a slow process, and if I want to keep using a walker I need to slow down and concentrate on what I'm doing.

Life expectancy... I think it depends on family history, not necessarily CP. My Dad's parents are in their 90s, and I have a great grandmother who is 108. I turn 39 in a couple of weeks, and besides the tight muscles, I am in good shape.

~66~

Hi, I don't think I will be alive at 65. I have the rare form (about 2-10% of CP people choreo athetosis). I have many problems related to this form of CP. We are the first group of CP's to be uninstitutionalized hell we are the probably the first group to survive past childhood in numbers big enough to be studied.

The following studies provide the most up to date information on aging and CP
http://www.jik.com/awcp.html
http://www.ofcp.on.ca/aging.html

I understand what you're saying about the CP causing pain and lots of muscular problems, allbuggeredup, but I think that in and of itself doesn't decrease how long you live. If the CP is very severe then it definately would, I agree...for instance, those websites you quoted were talking about people who were bedridden and couldn't feed themselves. But for those who have less involved CP a lot of that doesn't apply, IMO.

I'd be interested in learning of research that has been done with aging and people with varying symptoms of cp. It makes sense that people with feeding problems would have a shorter life expectancy than those who don't have feeding problems. People with eating disorders can experience heart problems, etc. Feeding problems can cause other health problems.
I don't know if pain related to muscle spasms can cause a shorter life expectancy. I think it has to do with life style like in AB populations. I believe people with cp have a tendency towards developing arthritis as do AB people, but I don't think arthirtis causes a shorter life expectancy.
My doctor recommended that I resume PT, but she never sent the prescription. A professor of mine said to periodically schedule an appointment with a neurologist because research is always coming up with new interventions for treating cp. I did have PT last year, and I think it helped. I have finally learned how to catch myself when falling and seem to have better balance.

I took PT when I was really young and then I didn't have it anymore because it was done through the school and they stopped it so I didn't start up until I was 17 it really helped with my balance and my muscle spasms, but it does take awhile for your body to get used to stretching if you haven't done it in a long time.