Adults with Spastic Diplegia

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  • kaydee64
    kaydee64 Online Community Member Posts: 1 Listener
    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
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    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.
  • Jean_OT
    Jean_OT Online Community Member Posts: 511 Empowering

    You 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 helps
    Jean
  • naomi_97
    naomi_97 Online Community Member Posts: 2 Listener
    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 
  • Richard_Scope
    Richard_Scope Posts: 3,749 Cerebral Palsy Network
    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 

  • Rochelleonwheels
    Rochelleonwheels Online Community Member Posts: 2 Listener
    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.
  • Richard_Scope
    Richard_Scope Posts: 3,749 Cerebral Palsy Network
    Hi @Rochelleonwheels and @akshayv
    Welcome to our community, great to have you here!
  • Issarian1993
    Issarian1993 Online Community Member Posts: 4 Listener

    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. :)  

  • woah
    woah Online Community Member Posts: 1 Listener
    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.
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    Welcome to the community, @woah!
  • Richard_Scope
    Richard_Scope Posts: 3,749 Cerebral Palsy Network
    Great to meet you @woah
  • April2018mom
    April2018mom Posts: 2,863 Championing
    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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