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CP and strokes -more information needed! Anyone else had one?
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DavidOnline
Community member Posts: 34 Courageous
Hi everyone. I had a stroke in August which made my symptoms of cerebral palsy worse. Has anybody else experienced this? I was wondering what the prospects of recovery and rehab are. I did find a research paper which is based on research in Taiwan. It says that people with CP are twice as likely to have a stroke. Both are neurological conditions. I would like to find someone with specialist knowledge of this area. Does anybody know of someone?
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Good morning @DavidOnline
How are you today?
I'm so sorry to hear that you had a stroke in August, I can imagine that was a frightening time for you. Although I don't have experience of cerebral palsy myself, it might be worthwhile speaking to your specialist/GP about your concerns or queries, just so they can offer their professional opinion too. Do you have a good medical support team in place?
I will also move your comment to our specific cerebral palsy category, in the hope that others will be able to share any similar experiences that they might have had/or are currently having.
I hope that helps and please don't hesitate to get in touch if you have any other questions for us
LibbyOnline Community Information Coordinator
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I will request my GP to give me specialist help. Because they are General practitioners they have not enough specialist knowledge in fact no knowledge of CP. Nor have any of the physiotherapists to whom I have been referred. I have found a private somebody with expertise in tai Chi martial arts and stroke rehabilitation who is happy to learn about CP. He conducts sessions on zoom. But if anyone can recommend anybody I would be very grateful. I am considering suing my GP for clinical negligence because I presented my symptoms before the stroke and they were not recognised
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I understand that it's difficult to find practitioners who are specialised in certain conditions. I had to do a lot of research myself for my condition of Endometriosis and find a surgeon who was skilled in that particular field etc, so it's really great that you're doing the same and conducting your own research and being proactive with thisDavidOnline said:I will request my GP to give me specialist help. Because they are General practitioners they have not enough specialist knowledge in fact no knowledge of CP. Nor have any of the physiotherapists to whom I have been referred. I have found a private somebody with expertise in tai Chi martial arts and stroke rehabilitation who is happy to learn about CP. He conducts sessions on zoom. But if anyone can recommend anybody I would be very grateful. I am considering suing my GP for clinical negligence because I presented my symptoms before the stroke and they were not recognised
Hopefully, some of our other members will be able to offer their experiences/advice and will have some suggestions for you too!
Online Community Information Coordinator
Scope
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I do think that Scope ought to keep a register of experts. It is one of the most common questions people ask. I also think it should conduct or commission research into cerebral palsy just as other charities for particular conditions do for their conditions.
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Hi @DavidOnline
Really interesting post. I do know that Stroke rehabilitation services and methods are beneficial to people like us living with CP. The key is having an open-minded GP, that will refer to these services. It is not really a question that is asked an awful lot. Strokes by and large depend on other factors, lifestyle, underlying circulatory issues.
Any further neurological incident, like a stroke, will have an effect on your CP.
Here is a directory of medical professionals that might help:Hospital Name of Clinician Specialism Team Contact Details National Hospital of Neurology & Neurosurgery, London - Dr Val Stevenson
- Honey Padillo
- Neurology
- Nursing
- Spasticity Clinic
- CP Nurse
Royal National Orthopaedic Hospital, London - Mr Tahir Khan
- Mr Hashimi Nejad
- Ms Debbie Eastwood
- Orthopaedics
- Orthopaedics
- Orthopaedics
- Lead - Young Adult CP service
- Young Adult Hips
- Paediatrics
Chelsea & Westminster Hospital, London - Anne Mcnee
- Physiotherapy
- Orthopaedic-Neurology.
St Georges Hospital, London - Dr Catherine Dalton
- Dr Alessia Saverino
- Claire Ward
- Rehabilitation Medicine Consultant
- Rehabilitation Medicine Consultant
- Physiotherapy
- Spasticity Clinic
- Spasticity Clinic
- Neurology / Community
Guys & St Thomas’s Hospital, London - Mr Marcus Banks
- Orthopaedics
- Adult Hips
Bobath Centre - Madeleine Cassidy
- Physiotherapy
- CP Centre
Nuffield Orthopeadic Centre, Oxford - Mr Tim Theologis
- Orthopaedics
- Special interest in Cerebral Palsy
University Hospital , Bristol - Mr Guy Atherton
- Orthopaedics
- Special interest in Cerebral Palsy
Robert Jones & Agnes Hunt Hospital, Oswestry - Mr Andrew Roberts
- Orthopaedics
- Special interest in Cerebral Palsy
Professional Bodies & Charities
Name Website Email Contact No. Royal College of Surgeons Chartered Society of Physiotherapists (CSP) Association of Physiotherapists in Neurology (ACPIN) Royal College of Speech and Language Therapsits (RCSLT) Association of Speech & Language Therapists in Independent practice (ASLTIP) Royal College of Occupational Therapy Royal College of Nursing (RCN) British Association of Prothetists or Orthotists (BAPO) Scope
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