How long do people with CP live? — Scope | Disability forum
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How long do people with CP live?

2cats25
2cats25 Community member Posts: 11 Connected
I ask this with tongue in cheek.  It was asked on an animated show recently, and the answer came back 'well you never see a grey haired one'.

I'm 63 and have CP which affects my left side. Last year I fell and broke my left hip. My right side, which has always taken the strain and has long been overused suddenly couldn't cope and it gave me severe hip pain. In addition I have Arthritis in my right wrist . I live alone and became a mess. After struggling to speak to a GP, I was eventually sent for x-rays which came back satisfactory. I saw a physio who said I had  Sciatica ( terrible pain from lower back to my toes) I was given exercises to do and told it could take months to improve. Since lockdown I've had worrying choking fits and quite a few scary ones). The SALT team are monitoring me. I'm pre-diabetic but haven't lost weight. I can't cook from scratch because of my hands, the choking issues seem to involve ripe fruit, water and any food that is hard for me to cut up. My latest issue is Restless leg syndrome, which obviously affects my sleep. The diabetes thing is really stressing me and I'm beginning to fear eating. I have rotten headaches and survive on Ice cream and biscuits. Not great I know, but I don't what to do. I feel like I'm waiting for the next 'health issue' to hit while I look for solutions to the existing ones. Life is getting scary. Any info or advice welcome.

Comments

  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Morning @2cats25 welcome to our great group, it's the best thing i have done for a long time.
    You have made me feel sad reading your post, you seem to have a lot of things going on all at once to cope with.
    I am so glad you have joined the forum, i do feel you will get help with advise, friendship and hopefully some distraction from your problems.
    I am sure you will be greeted by other members, when the group wakes up.
    I will check on you later to see how you are today.

    Feel free to have a look around the site and join in on any of the chats/threads/debates/games we even have an arts/craft thread. Any problems just ask some one is bound to be on line.
  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    Hello there @2cats25 and welcome to the community. I have CP myself, but I'm afraid I don't have a definite answer to your first question!

    I'm really sorry to hear about how everything is feeling so stressful for you at the moment, so thanks for reaching out this morning.

    You've mentioned you're living alone, do you have any friends and family close by who can help support you at all? 

    I've found some information which you might find useful from UP: The Adult Cerebral Palsy Movement (previously known as Adult CP Hub), about eating, drinking and swallowing. I wonder if you could tell me, have you had a referral with the SALT team?

    We'd like to support you as much as we can with this, so please keep an eye out for an email from [email protected] a little later on today. 

    Talking about how you're feeling is often very helpful, and thank you for being so honest. Please do use the community if you need help with anything, we are here to support you. If you can, try and stay as hydrated as possible over the weekend, as it's very hot weather at the moment.

    Alex
    Online Community Coordinator
    Scope

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  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Evening @2cats25 how are you doing today - it's really hot today in the Midlands, I for one will be glad of a change in the weather next week'
    I see you have meet Alex she is a really good person with lots of knowledge, 
  • 2cats25
    2cats25 Community member Posts: 11 Connected
    Evening all, haven't done much today., just trying to keep my two cats out of the heat and away from the local kitty bully. Was spaced out with tiredness. Managed to make a couple of juices with strawberries, wheatgrass powder and orange juice... the healthiest thing I've had in ages. Had a nap this afternoon and woke up feeling better, bright enough to think about how to cope with my issues. It doesn't happen often as lack of sleep usually  makes my brain foggy and sluggish. I intend to continue with the Dysphagia diary from the SALT team, it's looking a bit patchy. I realised I have a telephone review with the pain team at the end of the month. Will list all the things I'm dealing with and hope I get a face-to-face appointment soon. Tiredness and lack of mental energy makes things so much harder  to work through. I have a sister who lives nearby, while it's good to talk things through, doing things on another persons timetable and at their pace is challenging. Will look at this site in more detail later. Thank you all for reading my post and your advice. Much appreciated.
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Morning @2cats25 so glad you feeling better after a nap and your healthy smoothie - we can all have horrible times like that - great that you remembered you have a clinic appointment and you have already started listing you concerns. Hope today is a good day for you.
  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    edited August 2022
    Morning @2cats25 thanks for updating us, what type of cats do you have? I'm definitely a cat person myself :) 

    Those juices sound really refreshing, and I'm sure they tasted good too! I'm really glad to hear your nap was so helpful, sometimes I find our bodies tell us what we need. 

    It's positive to hear you're keeping a diary for the SALT team, I know they can be quite difficult to keep up every day, but I think even if it's just one note per day, that will be really helpful. 

    And that's a very good plan for your review with the pain team, listing everything you want to talk about will help make sure you don't miss anything.

    Tiredness has a massive impact on our ability to even think clearly, let alone get anything done, so having the right support, and taking things step by step will help.

    I'm also glad to hear your sister lives nearby, that's reassuring for you, but I can understand why it might be difficult not to feel like you're 'imposing' on their timetable as you say. Have you talked to her about how you're finding it difficult to manage things lately, especially with tiredness?

    Sometimes even the people we know well aren't aware of how much we might be struggling, and even if they can't help directly, knowing they understand more can be a comfort.

    You are most welcome for the advice, if you do feel we can help further, please just ask.

    Keep us up to date with how things go if you can :)
    Online Community Coordinator
    Scope

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  • Richard_Scope
    Richard_Scope Posts: 3,614 Scope online community team
    Hi @2cats25
    How are you doing today?

    To answer your tongue-in-cheek question, people like us with CP live as long as the general population. I know of many people well into their eighties and one almost 100! 

    Fatigue can be an issue as we get older with CP and as you know already, diet and rest are incredibly important. Eating sugary things gives us a quick energy hit but the 'sugar crash' can make any fatigue we already feel a lot worse. It can also speed up dehydration, and the sugar crash can cause nasty headaches.

    I find preparing healthy meals tricky too. I buy pre-prepared produce or prep things when I have more time and energy and freeze or refrigerate for later.

    There is a great site called Active Hands that has great gadgets to help with all sorts of tasks for people with poor dexterity or mobility.

    Scope has information on Dysphagia and swallowing. I have issues swallowing water and apples occasionally. There is also a National Swallowing Awareness Day that Scope supported earlier this year.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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