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Cerebral Palsy & Incontinence

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For some reason I cannot figure out how to reply to all of your kind comments so hoping you all are able to see this. Thank you for the notes of encouragement over the least few months. I have been unable to login since my intial post and seeing all that suppport was overwhelming.
A few weeks after struggling with my diapers myself, I told my mother. It was the most difficult thing Ive ever done and we both cried for quite awhile. I showed her some pamplets that my dr. had given me and explained how difficult it has been for me to do my diapering on my own. She immediately volunteered to help.
After a few weeks of trying to do be diapered by my mother she came to me asking if we could get me some in-home help. I wasn't happy at all with that idea, mosty beccause my whole life I have taken care of my cerebral palsy on my own. I argued with her and she asked if we could just give it a try.
I came home from a physical therapy appointment one afternoon and my mom introduced me to Cynthia and asked if I would be open to hearing her out on getting some in-home help.
Cynthia is an occupational therapist and she helps people with everyday tasks like this one. She explained to me that the work involved for me to change myy diaper was phsically rxing on me and my energy was best spent on other things. She also explained how hard it is for a loved one to care for me in this way.
After a few days I agreed to a TRIAL RUN of an in home caregiver.
About three weeks ago my caregiver started. We worked out a way to chang my diapers (my hips are unable to support weight for the traditional side change) and it was really hard on me at first. I was embarassed beyond belief. She was extremely kind ad knew I was struggling but really talked me through it. I have never been good at talking about my health challenges. Sylvia has really prompted me to talk out loud about the new changes in my body and to feel comfortable. I still hate wearing them, like HATE HATE HATE but I know I need to. So one day at a time I guess.
Thank you frm the bottom of my heart to all of you who Personal messaged or were concerned. I hope this blog finds you.
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Comments

  1. giantguy99's Avatar
    This blog has found me cpgurl. I am going to ask you a question regarding your feelings about this. Why should anyone care about being incontinent? I am not as concerned about the opinions of other people as society wants me to be because it is unhealthy in general. You are not a immature for being incontinent (or even being a AB/DL either if you are AB/DL). What makes someone immature is not a medical issue. It is only certain behaviors and mindsets. I know you don't like wearing diapers but after a while your going to probably not care because why should you? I myself am 6'6" tall and weigh 250 pounds but I am incontinent and everyone in my area knows about me being incontinent (not being a AB/DL). They don't talk down to me anymore because I usually point out their immaturity at seriously thinking I care about any social stigma on the spot. Go ahead and be open and honest with Cynthia because she seems to be really good at her job. Do not let your incontinence think you are somehow less then you where before. By all means please continue to look for support here on ADISC if you need it. I would recommend that you stay in the incontinence forums as things can get extremely controversial on other forums. We are glad you are doing alright and I am happy to see that we where all able to help!
  2. caitianx's Avatar
    I myself have Cerebral Palsy and Autism, and years ago, it was hard even for me to adjust to my ageing body's decline in functional mobility and totally permanently losing control over my bladder and my bowels. There are times when I feel angry that I have to wear leg braces and use forearm crutches to ambulate further than "across a room at home", and to need special hand-controls in my car to continue to be able to drive and be as independent as possible. Every day, it is hard to get out of my bed, and to perform self-care and dressing, and my ability to perform house chores is limited to just cleaning/vacuuming my own bedroom and washing dishes. It was this Winter, when I have mostly stopped shoveling snow on my own.
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