Cerebral Palsy
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
Receiving too many notifications? Adjust your notification settings.

Beneath the surface of ageing with cerebral palsy

Richard_ScopeRichard_Scope Community Team Posts: 2,510 Scope community team
edited December 2020 in Cerebral Palsy

By medical definition, cerebral palsy is a non-progressive condition. While CP might not present a progressive nature on the surface, the side effects can be painfully rampant throughout the body. Issues such as Post Impairment Syndrome and Fatigue can certainly make life more challenging.

Many people with CP become familiar with the mantra “out of sight, out of mind” from peers or professionals around them pertaining to their care and well-being. However, those same individuals don’t see excruciating sciatica or the persistent foot pain that arises from years living with cerebral palsy.

Chronic pain is valid and should be taken as seriously as an outward physical injury, but too often it is not. An environment that encouraged patience and compassion in dealing with issues like chronic pain would allow individuals like myself to feel better understood and not have to suffer in silence. While it is true that cerebral palsy is non-progressive, a shift in focus to include external and internal implications, not only for CP but for any condition is a productive way forward for the health of the disabled community at large.

Lastly, I want anyone who might be suffering in silence to know there are individuals in this community, including myself, who are here for you in support as our journey continues.

Scope
Specialist Information Officer - Cerebral Palsy

Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
Tagged:

Replies

  • carolus17carolus17 Member Posts: 1 Listener
    Has anyone had experience of a knee fusion?
  • Denise11Denise11 Member Posts: 98 Pioneering
    Hi Richard
    I have just read your message and was sorry to read of your arthritis in your neck.  CP is a progressive disability no matter what the medical profession say.  When I married Terry, he walked with sticks outside and when he died 18 years later he was using an electric wheelchair at home due to his lower spine being riddled with arthritis.  And when he died in his sleep one night, I couldn't help wonder if it was due to 1] Medication because he was on a strong tablet for pain or 2] he'd fell down at work the day before and a blood clot had reached his heart! The tablet he was on was strong and he used to give some to my Uncle who was a physio because Uncle asked his GP to prescript him those tablets but the GP refused point blank as he said they were too dangeres!  That was nearly 12 years ago!  As for me, my throat muscles are now going into spames when I eat and I choke.  Sometimes, it takes minutes [or it seems too] before I can breate again so I'm terrified I will suffogate and die on my own.  My nephew was here once when it happened and the next time I phoned my brother to try to say goodbye, it was that bad.  Sonilia says that this is quite common in people with CP as they get older.  My GP had tried to get me to see the ENT consultant but Covid hit us and so it was held up.  I druck some vodka after an hour and that was a great help.  The next day, I called 111 for advice and they sent an Ambulance so that the paramedics would see me and it could be noted on my notes.  The paramedics were great and one of them talked to my GP who speeded up the appointment at hospital but I've waited for months to see a speech therapist who is meant to teach me neck excerises to stop the choking.  Do you wonder if people with CP just keep trying to work around problems instead of specking up and asking for help?  After years of practise it is too easy to be quiet and it is an real effort to ask for help!  Especially, if it is going to take all the strength they can have?  Denise11







  • RegReg Member Posts: 20 Courageous
    Richard , thanks for your post though I am sorry to hear that you are already suffering with your neck. I am now in my fifties with mild CP but riddled with arthritis because of the way I have walked and limped through life and sat hunched up over a computer for years thinking that CP was non progressive and I needed to just push myself that bit harder to not let differences show.

    I wish I had known back in my twenties that I needed to take greater care of myself and not push myself too hard to keep up with my work colleagues.I hope your post will alert others in their twenties to the fact that help and care is needed whether you are a child or adult with CP.

    The irony for me is that when I eventually got to see a neurologist after many years absence he said I needed weekly physio but I would need to pay privately as the NHS didn’t provide the right CP services. The surgeon who operated said the same as well as the GP. I have said that it is perverse that I need to sit at a desk working to pay for private physio when it is the years of sitting at a desk and not giving in that has exacerbated the problems and by continuing to do so in order to pay for private physio I am just adding to the battle of ageing with CP.

    I hope that my response slows you down a bit so you don’t feel the need to work quite as hard or gives you the impetus to be a bit kinder to your body - things I wished I had been told in my twenties ! 
  • Richard_ScopeRichard_Scope Community Team Posts: 2,510 Scope community team
    Denise11 said:
    Hi Richard
    I have just read your message and was sorry to read of your arthritis in your neck.  CP is a progressive disability no matter what the medical profession say.  When I married Terry, he walked with sticks outside and when he died 18 years later he was using an electric wheelchair at home due to his lower spine being riddled with arthritis.  And when he died in his sleep one night, I couldn't help wonder if it was due to 1] Medication because he was on a strong tablet for pain or 2] he'd fell down at work the day before and a blood clot had reached his heart! The tablet he was on was strong and he used to give some to my Uncle who was a physio because Uncle asked his GP to prescript him those tablets but the GP refused point blank as he said they were too dangeres!  That was nearly 12 years ago!  As for me, my throat muscles are now going into spames when I eat and I choke.  Sometimes, it takes minutes [or it seems too] before I can breate again so I'm terrified I will suffogate and die on my own.  My nephew was here once when it happened and the next time I phoned my brother to try to say goodbye, it was that bad.  Sonilia says that this is quite common in people with CP as they get older.  My GP had tried to get me to see the ENT consultant but Covid hit us and so it was held up.  I druck some vodka after an hour and that was a great help.  The next day, I called 111 for advice and they sent an Ambulance so that the paramedics would see me and it could be noted on my notes.  The paramedics were great and one of them talked to my GP who speeded up the appointment at hospital but I've waited for months to see a speech therapist who is meant to teach me neck excerises to stop the choking.  Do you wonder if people with CP just keep trying to work around problems instead of specking up and asking for help?  After years of practise it is too easy to be quiet and it is an real effort to ask for help!  Especially, if it is going to take all the strength they can have?  Denise11







    Denise, I think that @Reg has hit the nail on the head really. We push ourselves to our physical and emotional limits just to prove we are as valid as the next person. I was brought up with the phrase 'There's no such word as can't' as I'm sure you all were too. This then creates a reluctance to ask for help which means it is thought that there isn't a need for that particular service or support.
    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 Community Team Posts: 2,510 Scope community team
    Hi @carolus17
    I haven't had a knee fusion myself. Has this procedure been suggested to you?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Denise11Denise11 Member Posts: 98 Pioneering
    Hi Richard. I agree about pushing oneself to the extreme is bad but if you want to have as normal exsistence as possible what else can you do?
    Denise11
  • Richard_ScopeRichard_Scope Community Team Posts: 2,510 Scope community team
    Hi @Denise11
    Since I've gotten older I have realised it is more of a balancing act between doing what is needed whilst listening to what your body is saying. It is very difficult to achieve!
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,053 Pioneering
    Hi @Richard_Scope,
                                       Thank you for sharing this, really important to continue to acknowledge the whole picture in relation to CP and the effects it can have, both on physical and emotional health and strive for change in this area.  Thank you to everyone who has shared their experiences. Thank you.
  • 2cats252cats25 Member Posts: 4 Listener
    Hi all,
    I’m 61 now and have had CP since I was a baby. The whole of my left side is affected and my right side became overused as a result, leading to major hip pain and arthritis in my right hand and fingers. I’ve waited over two years to see a pain specialist. Of course COVID-19 has delayed appts. I’ve also had terrible pain in my left shoulder and neck for four years. It was an occasional symptom of my CP before that, but now it’s constant and results in headaches too. My GP says it’s to be expected but doesn’t prescribe much in the way of treatment, just Baclofen and Cocodamol. During lockdown I had a scare when I nearly choked on food. I live alone and couldn’t get my breath but I did manage to go outside hoping to get help but there was nobody about.Thankfully I survived and have discovered what to do if it happens again. I managed to see a physio a few months ago about my neck. They weren’t doing hands on treatment so could only advise on exercise. I do these daily but nothing really helps. I’m worried that increasing neck pain could bring on more choking fits as my breathing seems shallow.The arthritis in my right hand is really bad atm. I’m in pain whatever I do but I don’t want to eat anything as the fear of choking is getting worse. I could do with losing weight so having a break from preparing/ cooking food, such as it was seems welcome. I worried about COVID in a general way, I try to take care of myself but feel I’m in a tailspin right now. I’ve waited nearly 18 months for a PIP tribunal but have heard nothing regarding a date for the hearing . I was wondering if I should ask my GP for an injection to ease my arthritis, they were putting their faith in the hands of the specialist but goodness knows when I’ll get to the hospital.  I’ve got nothing left  in my “ tool box” to try.
Sign in or join us to comment.