Hi - I am 25 with quad cp (athetoid/spastic). I use a pathfinder with headswitches to communicate and I am tube-fed. I am trying to get out more and meet people more, but I am finding it hard because of three main issues.
1. I make a lot of involuntary vocalizations. I am non-verbal, but I make a lot of groaning/grunting noises. I hate this, but have no control over it. I have never met anyone with this problem. I would love to talk about it with anyone who has experienced this.
2. Drooling. I wear a large bib, which is embarassing but necessary. I don't take any foods by mouth, so I am thinking about asking for surgery to help to minimize this problem. Any advice?
3. I don't have any bladder control. The undergarments that I've tried don't have enough absorbancy for more than a few hours out of the house. I've tried adding extra pads and doubling up, but it often ends in a big mess. My aids can't lift me out of the chair and put me on the floor of a public restroom for changing (gross!).
I'm 32 and have got mild CP (spastic). My folks sent me to this lady speech therapist as a child through the school system. Before the therapist, I was making light throat grunts/groans, my speech was most of the time illegible and I would mouth/suck on my shirt and would drool constantly. After the therapy, my speech became a whole lot better, I still have trouble getting people to understand me from time to time but it is much rarer these days, where as before it was almost constant. The need to suck on my shirt disappeared, the drooling eventually stopped, and I learned how to control my mouth/tounge/jaw/throat muscles better and to use them more to my advantage. I don't use my throat for vocalization as much as I did as a child and I don't do the grunt/groan thing as often. It also helped my eating/swallowing habits quite a bit.
I don't know if you've been through this type of therapy before, I won't lie; It is very uncomfortable and painful at first, but after a while it becomes so much easier and makes life quite a bit better. The tradeoff is enormous. Even for a severe case of CP, I think this therapy would help a bit as long as the exercises are done daily. Although, you can probably find them online for free yourself and save yourself some cash instead of hiring a therapist, it would be best to hire one to help you get through the rough patches at first and to get their feedback.
As for the bladder, I assume you are talking about peeing, there are exercises that can be done to help strengthen those muscles. Look into Kegel exercises. I know, they're used primarily by men for strengthening the penis muscles for use in sex but I'm sure there have to be some exercises that affect similar areas, that can be done by women. Some of the exercises can improve the ability to hold the bladder. It's helped me with my minor bladder issues anyhow. If these exist for us, then there has to be something similar along these lines for women somewhere. It just targets specific muscles in the hips/pelvic region and then you contract and release those muscles over and over to strengthen them. If possible, try to figure out which muscles you use for bladder control
and then contract and release them over and over again to gain strength, this might help.
Another option is a catheter with a bag attached. That way, everything goes into the bag and doesn't smell. Just make sure the tube is cleaned and sterilized thouroughly before each tube changing to prevent infections or use new tubes. Insurance might cover the costs, I'm not sure. Have you ever tried using those maxi-pad insert thingy's for periods in addition to the diapers? It might sound stupid, but it could be worth a try. You could also cut back a bit on what you eat/drink to help produce less waste. Talk it over with your doctor first and if he/she okays it and then make sure that the person who is feeding you gets proper and specific instructions from the doctor.
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