Cerebral Palsy
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Wanting to live independently with CP - any advise?

BoredlemonBoredlemon Member Posts: 12 Connected
edited May 2018 in Cerebral Palsy
Hi I'm Becca and I'm new. I have cerebral palsy and epilepsy and I'm painfully shy and have no clue what to say lol. Um...but what I'm looking for is support I guess. I'm from a very tight-knit, old fashioned community of people that stick to themselves mostly so I have no clue what's out there in terms of health, care, support or really anything that'll help me live independently or as independently as I can which is something I really want to do   

Replies

  • whistleswhistles Member Posts: 1,603 Disability Gamechanger
    Hi and welcome.

    Do not follow me, I don't know where I am going.
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello @Boredlemon and a very warm welcome to the community. I'm glad you've found us (and I'm fascinated to know more, if possible, about this 'tight-knit, old fashioned community')
    Best thing I can probably do for you right now is to tag in a gentleman who is our CP specialist and an all-round good guy, @Richard_Scope. I'm sure he will get back to you as soon as possible.
    In the meanwhile, if there's anything more you'd care to tell us about yourself or if there are any questions you'd like to ask, please do not hesitate.
    Here and listening,
    Warmest best wishes,
    Richard
    @JennysDad
  • BoredlemonBoredlemon Member Posts: 12 Connected
    @JennysDad I just really didn't want to say I'm Romany because you don't always get a positive reaction. I'm not saying they're all old fashioned some are progressive and modern it's just my lot are old fashioned in some ways. They're really supportive of me but they aren't really all that trusting of people so I've grown up very sheltered which isn't a bad thing, it's nice coming from a very supportive, protective family and community, but now I'm 27 I want to live on my own and have my own space but I've found I'm struggling more with my cp and they don't really get it. I'm falling more, getting tired more and I've had a few seizures, putting on weight because I'm struggling to get around which puts more stress on my leg. My knee and hip twist a lot, my ankle rolls under me, sometimes I just drop. Also I'm having the worst time concentrating which is attributing to me falling. I have right hemiplegia and to use my right side I have to really focus and concentrate on what I'm doing which has always been tricky for me but now it's become a lot more difficult and as soon as my concentration goes I trip and fall. I found the cp thread and was reading through it I noticed a lot of people are having these problems which is awful I wish they weren't but in some ways it's good that I'm not the only one, that this is common and reading through how some people deal with it helped and it feels less scary and now I know a little more about my own condition. I've only spoken to a specialist when I was too little to remember, when I was 13 and needed an op on my Achilles tendon and once when I was 18 when I was getting physio and no one really explained a lot to me they more spoke around me or over me, so that thread has helped loads. Before coming on here I'd only ever met 1 person with cp and they were much worse than me. I'm sorry I just don't want to say the wrong thing or seem ignorant. I'm nervous
  • Richard_ScopeRichard_Scope Administrator Posts: 2,353 Scope community team
    Hi @Boredlemon
    Good to meet you. How can I help? Please, try not to feel shy. We are very friendly here!
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,353 Scope community team
    I have CP too @Boredlemon and as I have gotten older my mobility has reduced. The strain we place on our bodies by the way we move means that we can experience additional issues alongside the standard ageing process. 
    Have you spoken to your family about your desire to have your own space and live independently?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Jean_OTJean_OT Member Posts: 532 Pioneering
    edited May 2018

    Hi Becca

    Welcome to the community.

    I know it can be daunting writing about your life and aspirations to a bunch of strangers but please believe me when I say that this community is a safe and friendly space. There is no room here for prejudice towards any group or culture of people.

    It sounds as if your condition has changed in recent years, so it might be good to get checked out by a GP, who can (if necessary) refer you to a consultant.  The consultant may be able to answer some of your questions about your condition and advise if there is anything that could be offered to help you manage it. Do you have a GP that you are able to see readily?

    When you say about wanting to live more independently how do you imagine that being? what sort of accommodation etc? Would you need some care provided or could you manage alone? I hope you don't mind me asking these questions I'm just trying to build up a picture of the direction you wish to go.

    Best Wishes

    Jean

      

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • BoredlemonBoredlemon Member Posts: 12 Connected
    @Richard_Scope I have spoken to my family about wanting to live more independently, they're supportive but have concerns. They're scared about me having accidents around the home or me really getting hurt if I fall and them not being able to get to me to help. It's scary I understand their concerns especially when, like the other night, my ankle rolled under me when I was getting out of  the bath and I fell and hit my head and that brought on a seizure but accidents happen and I just feel like if I let that kind of thing scare me or get in the way then I won't do anything or get anywhere and I told them loads of people with cp or other disabilities live their own lives in their own place and do fine. @Jean_Scope The accommodation the council are looking into. Basically ground floor and they said they'd help with some adjustments like grab rails for the bathroom, a shower board a few bits like that which is awesome and what I have now but I'd need slightly more help mostly with day to day things. Getting out of bed for example is a struggle sometimes. I don't know how to explain this very well but it's like I wake up but my right side doesn't straight away, like I want to move but I just can't, I can't even feel it. This can last between 15 minutes - a couple hours at most depending on what kind of day it is, and even when I do get on my feet I feel like bambi on ice for a little while, my leg's shaky and it gives easily and sometimes I have to use a wheelchair. My right arm is smaller, weaker and shorter than my left and I have limited movement I can't raise it above my head or fully extend it and my grip is not that great so I struggle with the simplest things it's very frustrating (button are the devils work). I think what I'll need is equipment to make these things easier for me to do for myself because I can kind of manage with help from my family but like today I looked in a mobility shop for stuff that could help with that and it's great, there's a lot but then I saw the price and was like 'Yikes maybe not. A little struggling never killed anybody'. I have been to me GP she prescribed me baclofen and sent me for physio but apparently it was the wrong kind of physio. When I got there the therapist said she couldn't help me and she said the muscles are so tight on my right side anything she'd could try to do will make it worse so she referred me to a neurological physiotherapist (which I didn't even know was a thing) so I'm waiting to hear back from that.    
  • BoredlemonBoredlemon Member Posts: 12 Connected
    Oh also random question but does anybody else suffer more from muscle cramps and convulsions when the weather's hot like this? Is that normal or should I be worried?
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello @Boredlemon and much kudos to you for your brave and honest response. You may have gathered this from the others who have responded, but you have absolutely no need to be anxious or nervous here.
    You've got some of the very best people on your side, now, and we're very, very glad you are here.
    Don't hesitate to tell us anything or ask us anything that might help us to help you.
    Really great to have met you,
    Warmest best wishes,
    Richard
    @JennysDad
  • BoredlemonBoredlemon Member Posts: 12 Connected
    edited May 2018
    @JennysDad I'm so glad people are so nice, helpful and open minded on here sometimes I'm sure you can understand that's not the case, I wouldn't normally have brought it up online but I feel like it's difficult to explain how I've had this condition my whole life and hardly know anything about it or the help available to me without first explaining that I've grown up kept away from everything. It's nice to have met you too
  • Richard_ScopeRichard_Scope Administrator Posts: 2,353 Scope community team
    Hi @Boredlemon
    I mostly get muscle cramps in cold weather. They are painful and annoying! I agree with my colleague @Jean_Scope, I would go back to your G.P. and ask to be referred to a consultant.
    I love your attitude and you are right people with impairments can successfully live independently. Once the everything is put in place. My colleague Jean is an Occupational Therapist and can advise you about adaptions.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • BoredlemonBoredlemon Member Posts: 12 Connected
    I will definitely go back and ask to speak to a consultant. I didn't know that was something you could request. Mostly, at my doctors we just have locums so I see a different one every time and when I explain what's happening they just say 'Oh it's your condition' and leave it at that so I'm left no better off and feeling clueless because nobody's ever fully explained to me what my condition even is or ways that might help me so even though I want help I have no clue what to ask for.
     
    @Richard_Scope Don't take this the wrong way but it's a bit of a relief knowing the weather causing cramps thing happens with other people with this condition, that it's normal. I front like it doesn't worry me but sometimes things do, like when I'm plodding along and suddenly my leg locks and I drop. I get cramps in the cold weather too I've found extreme weather either way irritates my muscles. Cold weather = cramps and I use a heat pad hot weather = convulsions in my leg it kicks out and I have to ice it until it cools and calms down. I can't use too much of either I have to find a happy middle or my leg gets mad it's very high maintenance. So is having both spasms and convulsions a thing? This is probably something to ask a consultant
  • Richard_ScopeRichard_Scope Administrator Posts: 2,353 Scope community team
    Spasms and muscle tightness are very much a part of CP. The tricky thing about CP is that everybody experiences it differently. 
    I have had similar experiences with G.P.s, they can sometimes be too quick to say a problem is linked to your impairment. Persistence is the key. I often have to explain that the problem I'm presenting with is not part of my 'normal' daily experience with my CP.
    I will include a link here to a general overview of what CP is. Not all of this will apply to you!
    https://www.scope.org.uk/support/families/diagnosis/cerebral-palsy 
    Don't worry about speaking your mind or asking anything! I'm here to talk and help where I can @Boredlemon

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Jean_OTJean_OT Member Posts: 532 Pioneering

    Hi Becca.

    Thanks for your response. Sounds like you are doing a grand job of taking the necessary steps to journey towards a more independent life.

    I'm glad to hear that there has already been some thought given to the adaptations that you will need in your new flat. Normally, how it works is once you have the keys to the flat the Occupational Therapist (OT) will meet you there to assess what you need. It would be a good idea to prepare for her visit by having a list prepared of all the activities of daily living that you think you might struggle to achieve independently. That way the OT will hopefully be able to supply you with the appropriate aids and adaptations that will make life easier. There might be some things that she can advise about but can't supply. You are totally correct in saying that some disability aids are costly, so do make so do make sure that you are claiming all the benefits that you are entitled to: https://www.scope.org.uk/support/disabled-people/benefits/check and be aware that you may also be able to get grant funding towards the cost of buying disability equipment https://www.scope.org.uk/support/disabled-people/search-grants

    There may be some value in talking to the OT, and obtaining some of the small personal aids (for things like doing up buttons, hair care, opening tins etc, etc) prior to the move so that you can practice using them in preparation for living independently.

    One clever bit of kit that might offer some reassurance to both you and your family is a fall detector alarm, the latest generation of which use smart technology so they work both on the home and when you are out and about. There are several different types on the market, here is an example: https://www.buddi.co.uk

    Hopefully the Community OT will be able to give you all the equipment advice you need, as it is always best to deal with someone who can assess your needs in person. However, as Richard mentioned I am an OT so may be able to make some suggestions if you get stuck.

    And in answer to your other question about the weather/temperature potentially impacting on spasms and convulsions...Yes this is definitely a 'thing' for some people...other factors like stress and fatigue can also play a part. However, whenever anyone has new or significantly changed symptoms it is wise to take advice from someone with medical training, such as the GP or 111  https://www.nhs.uk/NHSEngland/AboutNHSservices/Emergencyandurgentcareservices/Pages/NHS-111.aspx

    Best Wishes

    Jean   

    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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