[FOundefinedNT=Lucida Console]undefined[/FONT]My daughter is 24 with CP from early birth. She walked with a walker up until 3 years ago. She has had knee surgery in the past. She lives in so much pain and is taking shots to try to help. Not good enough. She has just graudated with her masters with a 4.0 and has a full time job helping others. She works with families and makes home visits as well with her clients. We need to find help for her. She tries to work and then spends all free time with her knee being iced and living on pain meds. She is so beautiful and smart with so much to give. Is there anyone out there who is having the same problem or knows of something we can do about the pain. Write soon please.
Mother looking for answers. :confused: :confused: :confused:

Distributor, I could be your daughter. I finished my master's a year ago, with that elusive 4.0, and am working my rear off at a job now. I am 26, with spastic diplegia. I've walked independently in the home, outside with crutches, and use a wheelchair for longer distance, nearly all my life. I use a chair more and more these days, it seems. I know what it's like to live in pain, and I know what it's like to have doctors shuffle you around because they don't know what to do with you. Over the past year I've met many, many adults with CP. The pain story is one that is all to common, regardless of functional level. Please let her know, that at the very least, she is not alone in this.

I stopped going to the doctor for my CP at 16, becuase they told me it wouldn't get worse, and I would stay the way that I was (as long as I kept stretching and took care of myself). 10 years passed, and as they did I felt progressively worse. A spontaneously dislocated patella (while standing still) brought me back into care. Knee pain led to hip and back pain. I started wearing AFOs. I hate them for their weight and bulkiness, but I've had no foot and knee pain since.

Does your daughter have AFOs? Did she have her hamstrings lengthened as a child? I ask because hamstring release often leads to a condition called genu recurvatum or hyperextension of the knee. It sets you up for instability at the joint and increased knee pain.

The other option, of course, is using a wheelchair part time if she doesn't already do so. This is a VERY personal choice, so I'm going to tread lightly here. I have posts interspersed on this board and others regarding my opinions on chair use. I'm not going to repeat myself, but suffice to say that part time chair use is the only way I have kept going though the years. It adds to my quality of life rather than detracts from it. Certain aspects of her job don't allow chair use (I used to visit clients' homes too), but others might. If she's not already a chair user, the mental hurdle is huge. If she does use a chair, it might be time to re-evaluate how often and under what circumstances she uses it.

Over the past year, I've had more doctors appointments than I care to remember. For me, augmenting pain and anti-spasticity meds with alternative therapies and exercise has helped. I have a massage two times a month, I've learned how to meditate rather than panic when the pain gets bad. I try to exercise a little bit everyday. Sometimes it's as simple as a walk around the block, but I also swim too. I stretch every day. That helps as well. I take 60 mgs./day of oral baclofen. This actually makes independent stretching possible.

There have been positive aspects to the pain as well, if you can believe it. It's forced me to slow down a bit (which I needed to do), it's made me take a slightly more zen approach to life, and it's forced me to finally start taking care of myself.

I wish your daughter only the best, and hope my experience has helped a little.

Nicki

Nicki, thank you so much for sharing. I was with Emily when I checked my sight. I had come over to message her legs with a biofreeze pain relieving gel. It helps some.
I want to know more about the Oral baclofen you take. I do have plans to get her into message therapy to see if that might help. She has not been to a PT since she was about 14 and her joint doctor doesn't want her doing any PT with the knees. Emily is in a wheelchair full time and only walks a very little just to get herself in her bath or to use the bathroom. She has a special van that has been a God sent with a ramp to get her in and out of the van. She drives with out any thing to aide her. She drives normally however her pain in the right knee has been so bad that I have had to drive her to work for the past week. She has just gotten her second series of shots in the past year. She can only get them every 6 months and she gets one a week for three weeks. It goes into the knee joint and may take up to 6 weeks before it helps.
I hope you and Emily can become emial friends and that you will be support for each other. She plans to register with HealthBoards so she can talk with others too.
I will pray for you too. From Mom on line. Keep the faith sweetheart.

Please have her sign up on this site since we can't share email addresses. This board is very restrictive about that. I'd be happy to talk with her.

Thanks, I am knew to this and didn't realize. That will be great and I will have her sign up.
Thanks again,