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Talk about cerebral palsy

Veronica_at_ScopeVeronica_at_Scope Posts: 15Member Listener
edited October 2015 in Guest Q&As
Hi, I'm Veronica. I have worked as Scope's Helpline manager for 25 years, providing information and support to disabled people. My lead role is around cerebral palsy, particularly the causes and effects of this condition. Whilst I am not medically qualified, I have a good knowledge around the subject, and I will be on the community for the next four days to try and answer any questions you may have. For example, you may want information on a specific treatment or therapy, you may want to talk about diagnosis or cerbral palsy and ageing - or you may just require general information about the condition and how people can be affected. Please bear with me if I am a bit slow in responding – I may have to research something or may just be trying to fit all this in with the day job! I look forward to talking to you.

Replies

  • GemstrGemstr Posts: 14Member Courageous
    Have you any experience of dealing with cerebral palsy and pregnancy. I walk with two sticks and have limited balance and I am worried about how I cope physically with the weight gain? Etc many thanks
  • Veronica_at_ScopeVeronica_at_Scope Posts: 15Member Listener
    Hi, Sorry about the delay in getting back to you. We had planned that this page would go live today to tie in with International Cerebral Palsy week but for some reason the page was live at the weekend.

    Anyhow, firstly congratulations on your pregnancy. Any pregnancy can cause Mums to experience increased pain especially back pain, and increased weight as the baby grows. Also as your pregnancy progresses, you will find that muscles are stretched and ligaments soften which can also cause pain and discomfort. Depending on the stage of your pregnancy, even simple tasks such as walking and sitting can become difficult.

    Have you talked about your experiences with your midwife or obstetrician? They would be able to advise you on simple exercises and how to manage your condition.

    You may also find it helpful to go for a massage that is specifically designed for pregnant women. Make sure you go to someone who is qualified in pregnancy massage and check with the salon or clinic first as you may need help to access a special massage chair or table.

    It would also be worth you contacting the DPPI (Disabled Parent and Pregnancy). This agency specialises in helping disabled parents who are pregnant or have children. You will find quite a lot of information on their website http://disabledparent.org.uk

    Hope this helps. Veronica.

  • DomdiDomdi Posts: 7Member Listener
    My son can us the toilet to wee but still uses nappies for other,any tips on getting him toilet trained completly
  • BillBill Posts: 32Member Courageous
    Hello,

    I’d like to ask about CP and ageing. I am 59 and I have mild CP. Until 3 years ago, I functioned excellently, and had a job. In the last three years, my gait has become much worse, I have no job and I now need a tetrapod stick to help me slowly walk half a mile a day. This rapid deterioration is worrying me. Is there a standard prognosis for CP? Should I plan to be housebound in 2 years time? Is continuing to force myself to walk daily a benefit (because any activity is helpful) or a hindrance (because the continual drain on my stamina makes everything worse faster)?
    Thank you very much.
  • Hi Veronica,
    Do you know of any link with incontinence and cerebal palsy? My brother who is 9 has spastic cerebal palsy and is in special nappies. I am trying to encourage him to use his toilet chair put him on it after school and he managed to do a wee and a poo. I am going to try him in underwear while he is at home at the weekend. We aren't sure if he is getting the message when he needs to go though or sometimes if he has done something. We are hoping to get him toilet trained before him starting big school when he is 11. We've tried before but he did it in pants and would sit in them.
    Terri.
  • Jill2013Jill2013 Posts: 13Member Listener
    Hi Veronica I would also like to ask about CP and ageing. I think more doctors and the whole community need to know that CP can change very much I am 45 and first noticed changes in my 30s. Its now got to the point I have to wear night splints every night. I have had NHS shoes made as my feet are so wide and I have difficulties with my arch. I have now been diagnosed with arthritis in both my toes from all the years of walking incorrectly. I was diagnosed when i was 10 however it was only in the last 3 years that I found out I had cp. This information was hidden from me. Even every time i mentioned Im having a lot of pain in my legs the doctors never told me. I found out by accident when i changed doctors and it was on my notes. This although a shock was a big step forward as I have now been able to get the help I should have had all these years. Is there any service out there specifically for adults with CP. Thanks
  • TANYAFIELDINGTANYAFIELDING Posts: 24Member Listener
    Why is it that when I contacted Scope about a treatment that was greatly helping my cerebral palsy no one was interested? The spastics society originally set up to help people with cerebral palsy seems to have been lost in Scope.
  • TANYAFIELDINGTANYAFIELDING Posts: 24Member Listener
    How do you actually reply to any of the discussions? Tap on them and nothing happens!
  • Veronica_at_ScopeVeronica_at_Scope Posts: 15Member Listener
    Hi Bill, There is a specific aspect of cerebral palsy which relates to ageing and often premature ageing. Also it is an area where there has not been a lot of research and medical research and information so it is not very well recognised especially by GPs
    Like cerebral palsy, people will be affected in different ways so there is no standard prognosis with CP and it is impossible to predict how the condition will affect you in the future.
    Often what happens is that people with cp strive to live quite an active life so they work and often push themselves to function in the same way as their peers. Although CP is caused by an injury to the brain, the effects are primarily on the body, muscles and joints so in pushing yourself, you are putting additional strain on the muscles and therefore can experience increased pain or burn out at a younger age.
    You can find more information specific to ageing and cerebral palsy on the Scope website - http://www.scope.org.uk/Support/Parents-and-Carers/Landing/Cerebral-palsy/Ageing

    I think you may find it useful to read this and perhaps print off a copy and take to your GP to discuss. It may be that some medication will help relieve any pain. It may also be useful to ask for a referral to a physiotherapist who can work with you on exercises that will allow you to retain mobility and independence but without putting too much strain on your body. Also contact with an Occupational Therapist may be helpful as they can look at functional solutions or equipment that may help. I think it is important to listen to your body and what it is telling you and try to adapt your lifestyle to suit for example, you may have to do gentle exercise or accept the fact that you may need to sit down more or use a chair or other equipment more than you did before.

    Do come back to us if you have further questions after looking at the information on our website.
  • Veronica_at_ScopeVeronica_at_Scope Posts: 15Member Listener
    Hi Terri,

    As cerebral palsy affects the muscle tone and mobility of the body, any muscle can be affected hence people with CP often have difficulties in walking, eating, and toileting. It is not uncommon for adults and children to have problems with continence and toilet training can be very difficult for many disabled children. Do continue trying the techniques that you have been. You can find out more on the Scope website - http://www.scope.org.uk/support/families/toilet-training

    I think you will find this information useful. However, some children will not achieve full independence in this area. As cerebral palsy is such an individual condition, the need and achievements of each person will differ. I hope your brother is getting nappies and pads via the health or social services and I can totally understand why you would like him to be independent before starting secondary school. I would suggest reading our information pages as above and then talking further to your brother's GP or hospital consultant.
  • Veronica_at_ScopeVeronica_at_Scope Posts: 15Member Listener
    Hi Jill, I totally agree that GP and many other medical and health professionals need to be more aware of Ageing and Cerebral Palsy and how it can affect people particularly if they also experience premature burn out in addition to the physical effects of ageing. Again I would point you to the information on Scope's website and my response on this issue to Bill (in these discussion pages). The Scope info is on our website http://www.scope.org.uk/Support/Parents-and-Carers/Landing/Cerebral-palsy/Ageing

    Interestingly, at the Scope helpline we talk to a lot of people who either get a very late diagnosis of cerebral palsy or find out in their 20s and 30s when they go to the doctor about something and the doctor mentions that they have cerebral palsy and this is recorded in the clinical notes. We think that maybe a lot of parents did not want their child to have a "label" so the child was not told they had cerebral palsy and grew up just thinking they had difficulty walking which is maybe what happened in your case.
    I am not sure what sort of service you envisage for adults. Mostly services are provided through the health and social services. If you can give me more information on what you are looking for or what sort of service you think you need, we may be able to advise further. Alternatively you can always contact us at the Scope helpline. Our Freephone number is 0808 800 3333.
  • Veronica_at_ScopeVeronica_at_Scope Posts: 15Member Listener
    Hi Domdi,

    You may find it helpful to look at the information on the Scope website relating to toileting - http://www.scope.org.uk/support/families/toilet-training

    Also the response I gave to Terri on this page.

    The info on our website has lots of information and tips on toileting as well as links to independent organisations which specialise in this area.

    I hope you find this helpful.
  • Veronica_at_ScopeVeronica_at_Scope Posts: 15Member Listener
    Hi Tanya, I am sorry to hear that you contacted Scope about a treatment. Do you know who you spoke to or which department? If you want to tell me more about the treatment or mention which one it is, you can communicate with me via this forum or contact the Scope helpline on 0808 800 3333. If you prefer to email, the address is [email protected] and mark it for my attention.
    There are a lot of treatments and therapies available to children with cerebral palsy and we always advise consulting with your child's medical team first and making sure the therapy is proven and evidenced through clinical trials and studies. On our website, we have a useful list of Questions to ask before embarking on a treatment of therapy which you may find useful - http://www.scope.org.uk/support/families/therapies/faqs

    Scope used to specialise in cerebral palsy and we still have information, support and advice about he condition. We also have local services who can support adults and children with cerebral palsy. The only change is that we are now a pan disability charity which means we support, help and advise a much wider range of people and we are more powerful in campaigning on issues that affect disabled people as a whole.
  • Richard_ScopeRichard_Scope Posts: 1,664Administrator Scope community team
    Hi Veronica
    Are you aware of any studies on the benefits of cannabis oil for people with CP. I have read many articles on the benefits for suffers of MS.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • BillBill Posts: 32Member Courageous
    Hi Veronica,

    Thank you for your reply. I am sad to read that there is little research into CP and ageing. The UK population is generally getting older and other charities will have access to different funding. They may be willing to share their work and their results (e.g. into the degradation of muscles) may be of use to you or Scope. I am highly motivated to help with research (as I certainly wish to understand the effects). I have some experience – years ago I did a small amount of post-doctoral work. Although that was in semiconductor physics (a field not immediately relevant) it demonstrates that I understand that research can be slow, and can involve tasks that seem boring and repetitive.

    If I can be of use here, please consider me.
    Thanks.
  • Veronica_at_ScopeVeronica_at_Scope Posts: 15Member Listener
    Hi Speedincaesar, We have had this issue raised a couple of time at the helpline. All I can say is that we are aware that some individuals have found cannabis useful for pain relief with certain conditions but it is their personal choice to try this. There is limited research (mainly overseas) to demonstrate effects. In the UK it is still illegal to purchase or supply cannabis so we cannot make any further comments. It would be inappropriate for Scope to suggest you try using cannabis in relation to your disability. You may want to discuss this further with your doctor but as mentioned, we cannot suggest you try what is still an illegal drug.
  • Veronica_at_ScopeVeronica_at_Scope Posts: 15Member Listener
    Hi Bill, Thank you for your response. I agree it is a shame that there is not more research into the effects of ageing with cerebral palsy. In 2005, Scope published a report entitled "Cerebral Palsy and ageing: a systematic review." It was written and compiled by Dr. Diane Cox, Clare Weze and Chris Lewis. This report pulled together all the research and publications at that time into this issue. As far as I am aware, there have been no major clinical trials and studies since then although there have been smaller studies which largely confirm the results published in the above report.
    Unfortunately Scope does not have a medical research department and as we are now a pan disability charity, it is probably not an issue that we could invest in further.
    If you would like a copy of this report (bearing in mind it is quite old), please contact me at the Scope helpline - 0808 800 3333 and I will send you one. We only have limited stocks but as you are particularly interested in the research aspect, I would be happy to send you a copy.
This discussion has been closed.