natural supplements specificly for CP any suggestions ? — Scope | Disability forum
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natural supplements specificly for CP any suggestions ?

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Noah
Noah Community member Posts: 425 Pioneering
edited June 2014 in Cerebral palsy
Started taking zinc and Vitemin C about a month ago and have noticed good improvments in the energy/alertness department! Was just on google looking for something that might help my joints, as i'm 28 and have spastic diplega and getting alot of joint pain, especially in my knees and hips, feel like they are wearing out abit! was just wondering if anyone knows a good joint suppliement? that might reduce the wear and tear. while on google I found a muti vitimin designed for CP. http://www.progressivehealth.com/catalog/vitarin.htm Any thoughts? or know somthing simular you can get in UK. Many thanks.

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  • Noah
    Noah Community member Posts: 425 Pioneering
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    Just thought I would try and put this one back on the home page, As I do feel that we have to look after our bodies a lot more than people without CP due to the extra stresses it is under. I read the Magnisum is suposse to help reduce muscel spazams.

    Come on, any personal experiences with taking suplliments that you feel has helped?
  • JDWilson
    JDWilson Community member Posts: 90 Listener
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    We havent tried many supplements and it can be difficult to tell if they work or not due to lenghth of time taken and remembering how they were before. I know that my daughter cannot do without her Baclofen due to muscle cramps We did reduce them once before under the hospital but her Pain increased. There must be something to help. I wish you luck and will keep a ear open. I do agree about the extra stresses placed on the body and would be interested if you find anything that helps. Sorry I carn't be of more help.
  • Noah
    Noah Community member Posts: 425 Pioneering
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    Thanks Across the park, if we alll work at sharing information together it helps everyone achive the best quaility of life possible with CP.

    Here to help where I can :-) x

    P's I took a very small amout of magism suppliment and it made me very poorly! so I guess it is an area everyone has to be very carefull at, and just becasue a suppliment works for one person doesn't mean it works for all!
  • Noah
    Noah Community member Posts: 425 Pioneering
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    Just thought I would bring this post back to the front! Any thoughts or suggestions?
  • CathP
    CathP Community member Posts: 7 Listener
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    A little late to the party here... but I’ve just started taking cbd oil. It is legally sold as a food supplement rather than a medical product, largely due to the controversy around it.  It has almost no THC in it so no need for anyone to worry though! I have been wanting to try it for a long time and have only just discovered how readily available it is, legally! 
    Holland and Barret sell it, and I just picked up my second batch for half price, which is on for another week. Best time to try. It ain’t cheap though - at half price it’s still £14.50 for a small bottle! Worth a go though if you can.
    I'm sleeping like a dream (making huge difference to quality of life with less fatigue) and I think it’s helping with my spasticity too, but I’m conscious of placebo effect there so am holding off on any declarations! (I have diplegia also). 
    Would be interested to hear if you do try it and what your experience is! 
  • Richard_Scope
    Richard_Scope Posts: 3,648 Scope online community team
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    Hi @CathP
    I have been interested in this subject for a while now. I have friends with MS who attest to the difference it has made to their daily life. I do have concerns that no real formal research has been conducted (to my knowledge).
    I would be really interested in how you get on with the CBD oil.
    Stay in touch.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Jean_OT
    Jean_OT Community member Posts: 513 Pioneering
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    There was a study published last month on the use of medical cannabis for pediatric moderate to severe complex motor disorders. It was a fairly small sample of 25 young people age 1 to 17 years and the study was 5 months long. Significant improvements were observed in spasticity, dystonia, sleep, pain and quality of life. Five people also had some adverse side effects. Abstract available at: http://journals.sagepub.com/doi/abs/10.1177/0883073818773028

    Personally, (on the basis of this study, others I have read in the past and conversations with people with CP) I think that the use of medical cannabis is a potentially interesting area of research that I hope will be explored further.  

    More generally the use of medical cannabis in the UK has been in the news a lot lately and  a Government expert panel has just started taking applications from Senior Clinicians who wish to prescribe it. This is an interim measure which they carry out a bigger review of the topic and what measures may be appropriate in the future. It sounds as if getting passed by the panel will be very difficult and it will be interesting to see if any clinicians are successful and what conditions their patients have.

    Interesting times.


    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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