I'm lucky that my CP is mild. I used to go to the gym and do what most everyone can do and although it was okay and I did to some degree benefit from the aerobic fitness, I didn't really enjoy it because it's not easy when you deal with CP. For the last 8 or 9 years I climb stairs at a fast pace to keep up with aerobic fitness and feel I am benefiting from it. I am a little bit self conscious so don't like to do any kind of floor work in front of others and struggle with my legs anyway. I do go for walks and get myself (weather permitting) and take Vitamin D too (for when I cannot get out). We have to find what works for us. We're all different. What works for you may not work for me and vice versa. Not easy times.

I would like to develop a program that can work for everyone but at the same time be adaptable to each persons needs. So the more information I get from everyone the better. I am just tired of hearing doctors and the insurance company say that once your an adult your just going to deteriorate .

Gosh, that's terrible. I've never been told that before. It's not too helpful to those of us who deal with CP and probably borne out of ignorance. No one will know the full picture of what we deal with and since they have no idea how we will age with the condition (there is no information out there past 18) so I'm not sure how they can reach that conclusion. Just do your best, that's all we can do.

I think its important to start documenting that. I just refuse to end up in a wheelchair.

Absolutely. Good on you for pushing yourself. Someone else might have given up by now. Love your determination to pull through. None of us with CP want to end up like that. Keep doing what you're doing. That's all I do. Whatever you thinks works, go for it.

I have spastic CP that effects all my limbs and has increased in my neck area as well. I am now having trouble eating and on days when the shaking is bad, I have been known to break my teeth. My saving grace has been getting a bachlophen pump that has made me hurt so much less and actually move easier. I feel less pain and want to do things I couldn't before so I have been walking all I can. I wear my Fit Bit and on days that I just hurt, I make myself walk 2 miles. Good days I aim for 4. I have trouble with weights as much as I would love to work out with them, my muscles just tear to easy and take forever to heal.

I still have the baclofen pump as an option but I am trying everything I can to avoid another surgery. Can you be more specific as to what the pump has done for you?

My main reason for getting the pump was to reduce my intake of oral meds a day. I was on muscle relaxers and anti spasm med and most days, I was taking between sixty and seventy pills a day. My kidneys were having trouble. After the pump, I am down to about 15 pills a day. My kidneys are now functioning better and my pain daily is so much more manageable.
My contactractures are less severe with the constant medicine and I can move easier. The pump also takes away the groggy feeling the oral meds use to give me. I am a better mom and wife now because I am able to stay awake for longer periods of time, and take part in more family activities. I basically feel like the pump has given back the last 3 years of my life. my children are not tiny anymore, they are 17 and 15 but my hope has always been to remain mobile until the graduate and I have achieved that. I know my body is failing more, as I have to have the pump dose increased every 4 or so months but it is worth it. My doctor has even worked with the pump manufacturer to give my a higher dose in the evening hours when my muscles are tighter and a lighter dose in the mornings when it is easier to move. the pump has the ability to adjust your dose very hour depending on your needs. Without the higher dose at night, I was getting up at 4 am so I could move my arms by 6 am when I had to get ready for my day. My contractures are less severe with the higher dose at night. Hope this answers some of your questions:)

I also have Spastic CP. I have not always had medical insurance and I haven't had any kind of physical therapy since I was in elementary school. The older I get the more rigid and restricted my range of motion becomes. I told my physician I think I need physical therapy for these issues, but nothing came of it. I like what you have discussed in these posts. Do you have any advice for someone starting out in getting a handle on her CP?

I find weight training to help tighten up my core, making it easier for me to walk. The more I can walk, the less my spasms are later. I really think more emphasis should be placed on weight training; my floppy muscles get stronger, and my spastic ones seem more relaxed after the exercise.

ladydelaney: Thank you for sharing your story with me. I have to admit I was pretty shocked that you were taking that many pills a day. I finally had to stop taking them a bit over a year ago because of side effects and depression. At that point I was taking 3 Baclofen a day and 3 Tylenol w/ codiene a day. I am glad that the pump as helped you so much.

Have you ever considered Botox injections? I get them every 3 months and they have been a huge help.

MsDileiny: You and I have simular stories in that regard. after elementary school there was no longer the option of physical therapy during school without paying for it. I didn't start getting back into it until I was around 25 when I started having back issues. I knew that land based physical therapy would not work for me so I opted to start going to Aquatic Therapy. This made a huge difference for me right off the bat. The warm water killed any soreness in my joints and I am able to work out longer because of it. Stretching was also easier in the warm water.

I also started looking into different yoga programs to try.

In my opinion the traditional physical therapy that we were taught as kids just isn't enough when your adult and is extremely painful and doesn't make enough of a difference when dealing with spastic muscles.

My biggest suggestion to you is try Aquatic Therapy first. Even if you just go to a YMCA and do some basic warm ups in the shallow end and then stretch if you can in the water. Try this for a few weeks and see how you feel. Then you can move onto other things like weights or yoga.

Hope this helps!

Message if you have any other questions

I know this might be a little off-topic, but has anyone heard about the intensive suit therapy? It's not a traditional physio (which obviously does not work for adults) as the suit itself creates an artificial gravity, which makes exercising more challenging and actually ends up decreasing the spastisticity. I believe it's widely used for CP children, but also for adults after stroke or traumatic brain injury. Just google Adeli or Thera suit, perhaps it's worth exploring too.

I have cp im 35 years old I went from not walking at all to walking then bk to not walking now I use a wheelchair every day some days I cant get out of bed I hurt so much not taking any medicine

Mariebe: What ages did you experience these changes. I am very interested because this mirrors my own story in a way. I was in a wheel chair until I was about 6. Then I used a walker for some time. Then walked unassisted until about 15 after a major surgery I used arm crutches for a few years. Around 25 I started using a single walking cane. Now at 29 I am starting to feel myself regress physically and am afraid I will eventually end up back in a wheelchair. That's why I started working out 2-3 times a week and even changed my diet to get rid of all processed foods and try and go vegetarian most of the week.