At home physio ideas for young adult with CP

sarahincos

Hi all! I’m here looking for tips and ideas to help my husband build up his muscle strength at home. Background information: My husband has CP with right side hemiplegia of which he has almost no use of his right side. His left side is currently okay as far as strength goes, but it is getting worse. He cannot walk or stand for more than a few moments, and is wheelchair bound. Currently, he spends the entire day, every day, in bed in order to avoid hurting himself. He also has a wound which requires dressing so hydrotherapy or anything involving water is out of the question for physio (unfortunately because I think that would be the best option!). He also has scoliosis, ankylosing spondulitis (which affects his neck causing an inability to turn/move his head), and ulcerative colitis.

He’s more motivated to do things with me than with a physio, so I’d like to take advantage of that while he’s still in a state of being able to build up his strength some—I just don’t know what to do to help him! Most of my ideas have revolved around using a foot pedal bike or some kind of resistance activity, but with his hemiplegia that is a bit of a challenge.

We’re both young adults in our 20s and although I am a nurse, I am not a physiotherapist so I need some help. We are currently awaiting domiciliary physiotherapy, but in the meantime if you guys have any ideas that would help I’d be most appreciative!

Also, please get in touch with me if you are a young couple in a situation similar to ours. I am not disabled, so sometimes having another person to talk to would make a world of difference. It’s a lonely journey sometimes when you don’t know where to turn to for help.
Thanks! Sarah

Noah

Hi Sarah,

Thank you for sharing some of your story, I hope that you find something that can help you and husband. There is so much you can do with physio, and yes I agree with you that physio in water would be very good, I'm guessing the wound will heal and you can revisit that?

Put some music on and make it fun, do it everyday, and keep a note of the progress. Focus on what he can do, but at the same time try and push the limits and challenge. Everyone with CP is different, you have to try and find what works for you, by listening to your body. There have been some interesting studies mainly in the states on using the Wii fit to help people with CP and their coordination. Also Dance movement therapy is another interesting area of research for people with CP. Both can be done at home. Its about helping the brain to make those connections with the muscles , it can be done, with a lot of determination, and patience. Look at the paralymipics for some inspiration. Everything you do to improve movement, coordination and function with people with CP is a good thing and will improve quality of life, what can seem impossible at first, can be possible with the right support. Make as much use of the medical professional physio service as possible.

A very interesting link on dance movement therapy and CP.
http://cpirf.org/is-dance-an-effective-therapy-for-cerebral-palsy/

Please keep us updated, I wish you the very best.

Noah :-)

Noah

Another interesting link that might help http://www.cerebralpalsysource.com/News_and_Articles/nintendo-wii-cerebral-palsy/index.html

sarahincos

Interesting ideas, but I'm not sure it would work for him considering he isn't able to stand to play a game, or lift his head to play one while he was standing to see the screen, or have much use of his right side while playing said game. I will investigate further to see if there is any game we could use as he is a big gamer. Thank you!

Noah

Lots of the coordination games can be played sitting down. It about giving everything a go, and finding your own limits, and often very unique ways of doing things. One of my best friends is paraliyzed down his left side, he always amazes me at what he is able to do, he has developed his own way of being able to use the wii. I'm always in awe of what he is able to achieve. I'm sure with some creativity, you will find something that that plays to all your husbands strengths and enables him to get stronger. Is there anything that can be done to help him with holding his head up?

sarahincos

Well, we have been trying to get professional help but it has been extremely difficult to get the services we need with any sort of urgency in our area. I'm not sure there's much that can be done with helping to hold his head up because it's due to his AS which is calcification of the vertebrae in his neck. His neck has fused itself immobile. I'll continue my search, but I think it's a matter of me finding the right source of information to make myself more knowledgeable as far as activities/exercises go so that I can try to adapt them for him.