Adults with Spastic Diplegia
Comments
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Hi everyone,
I'm new to the group and so glad to have found this. I too have spastic diplegia and was diagnosed as a toddler. I know CP is not a progressive disorder however I am noticing different issues with age. The issue seems to be that CP isn't very well understood by health care professionals.
Curious, does anyone notice their muscles more tense some days than others (without any logical explanation)? I find my right leg is very tight sometimes (unable to touch my heel to the ground) and other days I'm able to touch my heel to the ground without any discomfort or pain.
TIA -
Hi @tranath2130, how are you? How is your partner doing?
Welcome to the community, @kaydee64! Do let us know if there's anything I can assist you with. -
Hi @kaydee64You asked "does anyone notice their muscles more tense some days than others (without any logical explanation)? "I have dystonia (not from cp) and certainly I know that my muscle tone can vary a lot from day to day. Also, professionally I have spoken to a lot of people with cp who find that their tone is worse some days or in some situations. Often there is a pattern or explanation to why this is but it needs exploring to reveal what it is.Some people find it helpful to make a note in their diary of how their muscle tone is and also record what else was happening (stress levels, weather, medication, exercise levels, food, alcohol, etc) to see if there is any correlations.Hope this helpsJean
Jean Merrilees BSc MRCOT
You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist
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I have spastic diplegia I got diagnosed at a year old and I’m now 20 years old and fully reliant on a wheelchair not through choice, I have had many operations and therapy throughout my time however my pain seems to get worse the older I get! Glad to know others have similar issues
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Hi @naomi_97
Welcome to the Community!
There are lots of people in the Community that are experiencing very similar problems.
Have had an opportunity to look at "Things that you have found useful for managing your CP" discussion? There are some useful tips in there from people with lived experiences. Here is the link: https://community.scope.org.uk/discussion/28690/things-that-you-have-found-helpful-for-managing-your-cp#latest
Scope
Specialist Information Officer and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
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I am 25, I’ve got spastic diplegia. I got diagnosed at 2 year old, i’ve always rely a wheelchair I used to walk with a frame walker at school but not far but I’m hoping to do it again as I’m waiting a date for physio to start. My legs not that strong and very stiff as I have pains often. I used to crawl alot growing but I can’t handle it much without my knees hurting and my back ache. I’ve got weight issues too.
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Scope
Specialist Information Officer and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
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Hi I am 24, I live with my parents and have Spastic Diplegia, which I was diagnosed with at 18 months old. I was also diagnosed with Asperger's Syndrome at 16. Despite being told by doctors that my Cerebral Palsy would remain the same after the age of 18, mine has got considerably worse, and I now use a stick, a walking frame, a wheelchair and a mobility scooter.
As of my CP and Asperger's I do not work and will probably never be able to. My energy levels and concentration are ****, I am always tired and I do wear a mouth guard at night because I grind my teeth. Currently I can’t get out of the house on my own without support. I have difficulty crossing roads and poor awareness of danger.
However, I am able to do a lot of things thanks to the Pilates exercises that I do every day, the Physiotherapist that I see (which I do pay for), and the support from Adult Social Services. Trying to get appointments with the GP and hospital has always been difficult, but in October 2017 I changed to a nicer GP, and things are much easier now.
My parents have always been very open with me about my disability, and although I am not as independent as I used to be, I treasure everyday, and I have hope for the future.
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Greetings from California! 31 predominately spastic diplegia but w/ upper involvement as well. Definitely have noticed worse with age, more exhausting factor. It’s importent to get good quality sleep for physical performance and to maintain positive attitude like above poster for mental wellness.
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Welcome to the community, @woah!
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Great to meet you @woahScope
Specialist Information Officer and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
Want to tell us about your experience in the community? Talk to our chatbot and let us know. -
My 13 year old girl has SD (spastic diplegia). We noticed it when she was 4/5 months old. She was eventually diagnosed as a child by a neurologist at a appointment. Before then I thought that she was just taking her time with that area of development.
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