Mild cerebral palsy

Yvette48
Yvette48 Online Community Member Posts: 48 Connected
in Cerebral Palsy Network
Hi everyone, I was diagnosed with mild cerebral palsy when I was three but didn't find out till I was in my late 20s that I had it. Always knew though that something wasn't right with me. Fast forward to now I have had pain when walking now for a year and a half so I was referred for a ct scan. The results show that three discs in my lower back are wearing and also I have a diagnosis of osteoarthritis in my right ankle. It's getting harder and harder to walk even with a walking stick, I get so tired very quickly on a daily basis. I'm so upset because before I became ill in March of last year with various other things I was working and leading a normal life. 
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Comments

  • Sue_Alumni
    Sue_Alumni Scope alumni Posts: 484 Empowering
    Good morning @Yvette48 and welcome to the online community. Thank you for sharing your feeling with us and it must have been a big step to take.  I am sure that your feelings will resound with so many on the online community who will empathise with what you have said. 

    Do have a look around the forum and you will see that there are so many discussions around the subject of cerebral palsy and how it impacts on some members. Any condition is personal and its impact both mentally and physically varies for every one of us.  Have a look at our advice and support pages in the categories section on our forum.
    Change is often frightening to deal with whatever the reason.  Are you claiming any disability benefits at the moment or are you worried how you will manage to work if your conditions deteriorate ? There is a lot information on our site but more importantly our members are very supportive and friendly and I am sure they will respond and offer their support. 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    I'd like to add my welcome to the community @Yvette48 it's great to have you, and thank you for sharing your experience with Cerebral Palsy (CP). I have mild CP as well, and was diagnosed at a young age, but always knew I had it, at least in simple terms anyway. 

    I can imagine it must've been quite a big thing to find out in your late 20's, and caused a lot of mixed emotions. If you'd like to talk about it, we are here to listen :)

    I'm glad to hear you've been able to have a CT scan to pinpoint what's been happening. Dealing with a decline in physical abilities is so frustrating at times. I've found myself comparing what I can do now to 10 years ago and noticing quite a difference. There's no getting away from the fact that sometimes I feel sad about this, and that's okay, it's a common feeling.

    Managing things like fatigue and getting to know your limits can also be quite challenging. Can you tell me if you have any support from an occupational therapist or physiotherapist in place? I would consider speaking to your GP about a referral if not, as this support can make a real difference in how you feel day to day. 

    It's interesting you use the phrase "working and leading normal life", as that is how I view my life. My CP does throw up barriers at times when managing pain/fatigue, or dealing with inaccessibility, but I work, and do most (if not more) things a non disabled person can do, just in a different way sometimes. 

    As @Sue_Scope has mentioned, coming to terms with and getting to know our impairments and disabilities is a very individual thing, and takes as much time as it takes. I hope the forum here can act as a supportive and welcoming place to spend time, so please reach out if you need to.

    Alex
  • Richard_Scope
    Richard_Scope Posts: 3,740 Cerebral Palsy Network
    Hi @Yvette48

    It's great to meet you and thank you for joining the community 

    You are not alone feeling like this. Ageing with CP is a new challenge for sure. I have quadriplegic CP and a wheelchair and since I hit 40, I have felt the changes in my mobility and energy levels.   

    Us CP folk use up a lot more energy than non-CP people, up to 5 times more because of the way we move or walk etc, this can lead to fatigue.  

     
    The key is learning about your body and planning your day around that as much as you can. Plan the bigger tasks at the time you have the most energy etc.  There is also something called Post-Impairment Syndrome that is related to CP this refers to additional conditions that might be acquired by someone already living with CP. Here is an excellent blog post about it:  
    What Post-Impairment Syndrome Means to Me  


    I completely understand your feelings about medical professionals but what I would advise is that you book an appointment with you your G.P. (telephone appointments will work too) and talk to them about how your CP has changed. And getting a referral to a neurologist or neuro-physiotherapist. You can mention the CP Care Pathway which instructs G.P.s how and when to refer.

  • Yvette48
    Yvette48 Online Community Member Posts: 48 Connected
    Hi everyone, Thankyou so much for all your really good information. I was let go by my employer after 25 years in February of this year. Up until December 30th 2020 I was quite active in my job in retail but then I got a dvt which went to my lungs and since then I've had a lot of complications. I am seeing a physio and she's really good, she has requested a brain scan to see if they can find out what's going on. I'm also booked in with her for manual manipulation on my spine and joints to hopefully get some pain relief. I didn't know that cp could actually affect you as you get older until I looked on the NHS website  either. It actually relates to a lot of things that I'm going through now. I did tell my physio but she said it doesn't get worse but surely so many sites are saying the same thing it can be right. I just know that before all my health issues I was quite active and now I have trouble walking, pain and quite severe tremors in my legs and left arm. 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Thanks for sharing @Yvette48 has anything changed since you last posted? :)
  • Yvette48
    Yvette48 Online Community Member Posts: 48 Connected
    Alex_scope. Hi no nothing has changed in fact I've got an appointment with my gp on the 5th October as I need to find out which cerebral palsy I have and where the actual brain damage is. I have a feeling I have mixed cerebral palsy as my balance is really affected as well as the way I walk too. I will be asking about post impairment syndrome too as l have daily fatigue, I have osteoarthritis and degenerative arthritis. My physio said the degenerative arthritis is connected to my age so I guess I've aged more in the last two years as I never had this before I lost my job. I was on my feet all day and worked on beers, wines and spirits and never had this much pain. I'm at a complete loss of what to do, my physio tried to do some kind of technique on me last week but I was in so much pain she had to stop. I really don't want anymore medication or injections as I already have seven prescriptions a month. I'm feeling so lost and isolated as its affecting my health daily. 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hi @Yvette48 I'm sorry to read how the pain and fatigue are making you feel, it sounds tough going at the moment. If you can, make sure you talk about this with your GP on the 5th, as your mental health is just as important as managing your CP. You might like to ask about having a needs assessment to help you manage with things day to day.

    Getting some clarity on your CP will hopefully have a positive impact for you and enable you to access the support you're looking for.

    The community is here to support you if you need a safe space to vent or to help you feel less isolated. You can also reach out to other organisations for help if you'd just like someone to listen, like Samaritans, who you can call confidentially on 116 123. 

    If you prefer, you can also text "SHOUT" to 85258 for free support 24/7, or visit Mind to read about tips on managing feelings of loneliness or isolation.

    Let us know how things go with your appointment soon, and take care this week. You're not alone in this :)
  • Yvette48
    Yvette48 Online Community Member Posts: 48 Connected
    @Alex_Scope. Thankyou so much for all your really useful advice, I really do appreciate it. Had a better session with my physio on Tuesday, she did a joint mobilization on my left hip and that side of my back. She said I tolerated it really well which is very different to the week before. I mentioned post impairment syndrome to her and I think she agrees as she looked it up. I still have pain but it's not so intense that it's hard to walk from the perspective of my left side. I have a brain scan on Tuesday so I should get some answers at least. I will let you know how my appointment goes on the 5th too. Once again Thankyou to you and everyone else who have offered me advice. 
  • Tori_Scope
    Tori_Scope Scope Posts: 12,464 Championing
    That all sounds really positive @Yvette48 :) 

    How are you feeling about the brain scan?
  • Yvette48
    Yvette48 Online Community Member Posts: 48 Connected
    @Tori_Scope, hi sorry I've only just read your comment. I haven't been too well lately. I had my brain scan last week which for some reason my legs were shaking quite a lot which I couldn't control, it wasn't because I was nervous as I've had a few mri scans in the past. I now have to wait for the results and hopefully it will give me some answers. I went to my Dr to ask about post impairment syndrome due to me having mild cp as well. Apparently there is nothing mentioning that I have it although like I've said in one of my earlier posts it was on a medical report that I had to get for something in my 20's. The only thing I can think of is that because it would've been 1976 when I was diagnosed it would of been all paper based notes but I'm not 100% sure. Anyway I know that's what I have because all my symptoms apply to it. I come out of my Dr's more confused than when I went in which made my anxiety high again. Like I said though hopefully this mri scan will give me some answers. 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    I'm sorry to hear you've been feeling more confused @Yvette48 it's not easy when we get conflicting information. I hope you're able to do something you enjoy this weekend, to help take your mind off things. 

    I hope the MRI results will help to settle things for you, as I know how unsettling waiting can be. The community is here if you need us, so please don't hesitate to reach out :) 
  • Yvette48
    Yvette48 Online Community Member Posts: 48 Connected
    @Alex_Scope. Hi I'm posting as I have some of my results back from my brain scan. I have brain lesions in various areas which I'm not too sure about apart from it means damage. I am now being referred to a neurologist and neurological physiotherapist as they can be of better help to me. I'm quite scared to be honest and coupled with my anxiety it's all I can think about. 
  • Tori_Scope
    Tori_Scope Scope Posts: 12,464 Championing
    I can imagine that'd feel quite worrying @Yvette48, but it sounds as though you've been referred to the right people :) Do you know how long the referrals might take?

    Is there anything you could do that might help you to take your mind off of it?
  • Yvette48
    Yvette48 Online Community Member Posts: 48 Connected
    @Tori_Scope, hi I'm not sure how long it's going to take but I'm hoping it's soon because I don't think my anxiety can take much more. I'm also still waiting for my full spine scan results but hopefully they won't take as long. 
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    @Yvette48 I am keeping everything crossed it doesn't take too long! I just wanted to add, if you know who you are being referred too, I would contact their secretary to ask if there is a cancellation list. If you are able to go on shorter notice.

    That helped with my anxiety to know I did everything I could to be seen sooner when I was in the referral process for my IBD. 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hello @Yvette48 I've just been catching up, I can understand why you're feeling anxious, and hopefully your neurologist and neuro physio can help explain everything and reassure you, fingers crossed it won't take too long for you!

    Have they given you a rough idea about your spine scan yet? :)
  • Yvette48
    Yvette48 Online Community Member Posts: 48 Connected
    @Alex_Scope. Hi I've had a letter from my physio that she has also sent to my gp and the hospital. I have multi degenerative changes in my neck and also lumbar spine. As for the brain lesions it says that I have white matter brain lesions that raise the possibility of demyelination. So I'm definately worried now. I'm also getting a lot more pain in my back and my legs feel tired and achy even with the slightest bit of exercise. Thankyou to each and everyone of you that as been there for me because I feel like no one understands how this is all affecting me. Like I've said in one of my first posts until 2021 when I got a pulmulary embolism I was working long hours in a supermarket, on my feet all day and was doing okay. Since the P. E I have had numerous problems with my health which as reduced me to having use a walking stick to keep my balance and help me walk a bit better. Also I'm getting really bad tremors in my legs which can cause me to fall, I've fallen four times this year and really hurt myself. It's all been a big shock to my system and I'm still trying to come to terms with it. 
  • Yvette48
    Yvette48 Online Community Member Posts: 48 Connected
    @Hannah_Scope hi, I'm not sure who I will be seeing as it just says neurology team. I'm hoping it won't be too long but I know that our local hospital is very busy at the moment. I will keep you posted as to when I have an appointment though. 
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    Hello @Yvette48

    Fingers crossed the appointment comes soon 🤞

    I know it can be hard, coming to terms with it all. Sometimes all that information can be very daunting, we are always here to talk to vent or if you just need a giggle :)<3  
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    I second Hannah @Yvette48 the community is here for you, and hopefully over time things will feel less overwhelming. 

    Sometimes medical terms can be quite anxiety inducing, if you are getting worried about what different things mean, make a note to go through them with any teams you speak to, as it's important you get the reassurance you need :)  

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