Ask an expert about Parkinson’s Disease (UCLH web chat) 

 

To mark this year’s Parkinson’s Disease Awareness Week we had an expert in movement disorders hosting our next web chat. Dr Mark Edwards is a consultant neurologist at the world renowned National Hospital for Neurology and Neurosurgery where he runs specialist outpatient clinics – he is also a senior lecturer at the UCL Institute of Neurology and Neurosurgery. 

Dr Edwards’ clinical and research interests are in movement disorders (Parkinson’s disease, atypical Parkinsonism, tremor, dystonia, myoclonus, tics and chorea).

Below is a transcript of the webchat.


11:36 UCLH: 
Good afternoon and welcome to our web chat. We will begin at 12 o'clock but you can submit your questions now in preparation for the chat. Please note: your questions will not appear in the main chat window until after 12.

Dr mark Edwards will be joining us to take your questions on Parkinson's Disease and will try to answer as many questions as possible within the hour long web chat.
 
12:02 Dr Mark Edwards: 
Welcome to our web chat on the subject of Parkinson's disease. My name is Dr Mark Edwards and I am ready and waiting to take your questions.
 
12:02 [Comment From MarionMarion: ] 
My mom had breast cancer in Ireland and was on Tomoxfin for 15 yrs She had a silicon implant - are there any connections to either the two above to Parkinson's? She has PD now for 20 yrs only this year has it got difficult to control. Can an Irish patient come to the UK for surgery ? Can patients in Ireland be placed in uk clinical trials Thank you
 
12:06 Dr Mark Edwards: 
Thanks for your question Marion. There are not any connections known between silicone implants and Parkinson's disease. In answer to the question about surgery this is a good treatment option for people with Parkinson's disease, but only if they have specific symptoms/issues with medication and fulfil a number of other criteria. This is why people considering surgery for Parkinson's disease need assessment in specialist centres. patients from Ireland can access deep brain stimulation in the UK via referral from a movement disorder specialist in Ireland. Regarding clinical trials it may be possible to access these, but is a bit unlikely as often they require numerous physical assessments etc which may not be feasible. Always worth emailing the study coordinator for any such studies to ask.
 
12:06 [Comment From RekhaRekha: ] 
I was diagnosed with PD in 2007 when I felt slight less power in my left hand and my GP referred me to a neurologist, at the NHNN. At the time I was a member of staff at UCLH, and my manager put me in touch with Dr. Jarman as she knew him very well in this field, his referrals were received by our Department of Clinical Neurophysiology for EEG, Nerve Conduction Studies and EMG. After two years I started having back pain and I applied for ill-health retirement and was awarded in 2010. I attended at NHNN a Pain Management course and was feeling better, and I also continued doing yoga, Pilates and physiotherapy exercises for the back. I was doing ok but since last 14 months the pain don't seem to go, but increased, and gone down to my right side of leg. I was referred by Dr. Jarman my neurologist to the Spinal Team at NHNN and they recommended facet joint injection as I was also diagnosed with scoliosis and said it was a major operation. The injection worked but it came back after five months. They then referred me to Royal National Orthopaedic Hospital in Stanmore for epidural injection in my lower back which did not work. At RNOH I also saw Mr Molloy who is scoliosis specialist and he got me to do spec CT of Lumber spine, CT scan and bone scan at UCLH. At the follow up he did not see me, but his Registrar saw me and told me that I was not candidate for an operation as it is risky due to my PD. I don't shake and my PD is under control according to the neurologist. So can't understand why he said no to the operation? I approached Mr Ian Harding, Consultant Spinal Surgeon, in Bristol. He did my back operation to put cushion type staberization between the gap, but I still have back pain and my right leg pain came back after 3weeks. Now it's even more why?
 
12:10 Dr Mark Edwards: 
Hi Rekha. Thanks for your question. People with Parkinson's disease can have surgery, but the additional risks of that surgery due to Parkinson's disease (over and above the "normal" risks of the surgery itself and the impact of any other medical problems you have) massively vary from person to person. So there is certainly not a simple ban on patients with Parkinson's disease having surgery - it is something that needs to be weighed carefully in an individual patient. Many people with Parkinson's go through surgery without any problems. Sometimes some basic advice from your neurologist about medication around the time of surgery (for example if you need to be "nil by mouth" for a while) can be useful. Hope that helps.
 
12:10 [Comment From SilaSila: ] 
I would like to ask about evidence or any investigations about medical use of MDMA compounds to relieve the condition. Documentaries on BBC have shown astonishing results in helping patients under controlled experiments. Problems with psychoactive side effects are an issue. Has Dr Edwards any comments on this development in treatments for Parkinsons.
 
12:13 Dr Mark Edwards: 
Thanks Sila,

MDMA along with a number of other compounds can affect the way that dopamine is cleared from the brain once it is released and can therefore increase the amount of dopamine around - which would seem to be a good thing for people with Parkinson's disease. However, as you mention in your question these drugs can have a number of unwanted side effects, and at the present time in my view there is not enough evidence that these drugs can work without significant adverse effects - however, work as always is ongoing. MDMA itself has clear significant issues with potential fatal side effects.
 
12:13 [Comment From EmmaEmma: ] 
Dear Dr Edwards, I should be most grateful if you could please explain what are the main early symptoms of Parkinson's. And is there an early blood or other screening test? Thank you very much in advance for any pointers.
 
12:17 Dr Mark Edwards: 
Hi Emma,

The very first symptoms of Parkinson's disease are not movement related but are other "non-motor" symptoms which are diverse and can include constipation, depression, fatigue, sleep disturbance and pain. Of course these symptoms are hugely common in the general population and are often NOT caused by Parkinson's disease. The movement symptoms are typically slowness and stiffness of movement, which can cause problems with handwriting and other tasks, slowness of walking, tremor. The diagnosis is a clinical one, meaning that it is primarily based on the symptoms and then the physical examination. Tests are rarely helpful and there is certainly no blood test or simple screening test that has enough sensitivity to make the diagnosis. The best idea is to see a neurologist who has an interest in Parkinson's disease.
 
12:17 [Comment From SueSue: ] 
My Mum has had Parkinsons since 1993 she is on selegeline, well controlled, over the last few months she has started seeing people in her home that do not exist, is this part of PD or related to something else. She has contolled heart failure, AF & blind in her left eye, catarract in right. thank you.
 
12:20 Dr Mark Edwards: 
Visual hallucinations are a feature of Parkinson's disease for some people, especially the longer they have Parkinson's disease. Medication can make hallucinations more likely to happen. Visual problems as you report in your mum can also make hallucinations more likely to happen. Sometimes hallucinations only occur when people with Parkinson's disease are unwell with something else, for example an infection. They are most commonly "misperceptions" of things in low-light conditions (for example in the evening or at night. Sometimes they are hard to separate out from very vivid dreams. For some people they are not frightening or intrusive but for others they can be. The best advice would be for her to see her neurologist or PD nurse and explain what has been happening.
 
12:20 [Comment From LizLiz: ] 
Good afternoon Dr Edwards, My father has suffered from PD for 15 years. One difficulty he has is with drooling – he has been prescribed some medicine for this but I am not sure if he takes it regularly enough or holds it in his mouth for long enough periods. I should be grateful for any advice to help him. Many thanks.
 
12:23 Dr Mark Edwards: 
Drooling can be a difficult symptom of Parkinson's disease (PD - hope from now on it is ok if I use this abbreviation - it helps with my typing speed!). It can be embarrassing and difficult. Medication can help (either tablets or skin patches). Some patients get benefit from botulinum toxin injections (botox) given into the salivary glands. This is a treatment that needs a specialist to give, but it can be a way of managing this problem in some patients if medication has not worked. It would be a good idea to discuss with his neurologist/PD nurse.
 
12:24 [Comment From SumeetSumeet: ] 
Hi, my mother has had Parkinsons for a number of years now, 9 since being diagnosed I believe. I recently read about the ongoing investigation of stem cells in treating this. Have there been any significant advances in this field, and is there any proposal regarding when it may be possible to treat people using this?
 
12:26 Dr Mark Edwards: 
Hello Sumeet,

Stem cells for treatment of PD has been a topic of research for many years now as it has been in other medical problems. It still has many difficulties as a treatment from a technical point of view, but work is ongoing worldwide in research. There is no available treatment clinically at present. It is very important to be aware that there are some unscrupulous people who on the internet offer "stem cell" treatment for large amounts of money but which in fact are not offering anything that has been properly tested and verified.
 
12:26 [Comment From SueSue: ] 
What is the difference between being diagnosed with Parkinsons versus intentional tremor/parkinsonism? My brother aged 55 years has tremors, since he was mid 40's, but told not Parkinsons, yet Mum has Parkinsons, he is on betablockers. Just wondering what the difference is, appreciate this might be a big ask on a web chat, so if there is a resource media you could suggest, that would be appreciated. thank you
 
12:31 Dr Mark Edwards: 
Hello Sue,

There are many people who have tremor which is not due to Parkinson's disease, but instead to other neurological conditions. Many of these people have "benign" tremor, meaning that the tremor is not caused by a degenerative disease process like Parkinson's disease, but more of a "malfunction" in the brain - such tremors can certainly get a bit worse over time and can be disabling (so in this sense are not necessarily benign for the person who has them), but they are different from tremor due to PD, and respond to different treatments. Sometimes the distinction between Parkinson's disease that causes tremor and one of these benign tremor syndromes can be difficult. It is therefore something where seeing a neurologist who specialises in PD can be helpful. Sometimes (but often not) a special scan called a DAT scan can be used to help with the diagnosis.
 
12:33 [Comment From KikiKiki: ] 
Is there any link between Parkinson's and recreational drug use? I am now in my 50s but took a lot of drugs back i the day - should I be worried?
 
12:37 Dr Mark Edwards: 
Hello Kiki,

Lots of recreational drugs have their effects by in some way causing dopamine release in the brain, so one might think that there could be a link with later development of PD. However with the vast majority of these drugs there is no evidence that they make people more likely to get PD - though a link cannot be ruled out completely. There are a couple of specific examples where recreational drug use has caused Parkinson's-like symptoms, but these are where toxic products from the drug or the way it has been delivered cause direct brain injury - and the symptoms include many not seen in typical PD.
 
12:38 [Comment From SumeetSumeet: ] 
Thanks Mark, are there any other experimental treatments that are at clinical trial stage etc? As I'm sure many will be experiencing similar issues, my mother's mobility is extremely hampered and quality of life slowly worsening as such. Are there any qualifying factors if there were such trials?
 
12:41 Dr Mark Edwards: 
The best way to find out about active clinical trials is from the UK Clinical Trials Gateway: http://www.ukctg.nihr.ac.uk... Another source of information is Parkinson's UK. All trials have inclusion and exclusion criteria - in other words things that mean people would be able to or not able to participate, but these vary from study to study.
 
12:41 [Comment From SueSue: ] 
Thank you Dr Mark Edwards for your responses, they have been helpful & informative, I'll get the PD nurse involved with Mum. My brother had a DAT scan many years ago, unfortunately no one has been able to find the results, your insights have been very helpful. Thank you.
 
12:41 Dr Mark Edwards: 
You are very welcome.
 
12:41 [Comment From ForsterForster: ] 
Are there any real tell-tale signs that would suggest and elderly relative may have Parkinson's disease? Especially if it has occurred in the past within our family.
 
12:43 Dr Mark Edwards: 
If you look back at my answer to Emma earlier in the chat I listed some of the common non motor and movement symptoms of PD. The diagnosis can be quite tricky in very elderly people who may have other medical problems causing slowness of movement and stiffness, and even may be on medication causing Parkinson's-like symptoms. Best to go to see a neurologist specialising in PD for a proper assessment.
 
12:43 [Comment From LizLiz: ] 
Is there a genetic link for PD at all, please? Thanks.
 
12:47 Dr Mark Edwards: 
There is to some extent. There are some fairly rare situations where a single gene abnormality causes Parkinson's disease to be strongly inherited in an individual family, but this is not the normal situation. In such families PD often starts at a young age (e.g below 45). For "typical" PD, there is a small increase in risk of inheriting the condition if one has a first degree relative with PD, but this increase in risk is small and there is not a specific genetic test that is helpful in this situation. It is important also to realise that Parkinson's disease is a very common condition, so it is very possible for more than one member of the same family to have PD without it necessarily meaning there is a clear faulty gene causing it. If you have specific concerns regarding PD which seems to be strongly inherited in your family you should to talk to a neurologist with an interest in PD or a Regional genetics service which your GP could refer you to. Just to reiterate though, "typical" PD is not strongly inherited.
 
12:48 [Comment From KikiKiki: ] 
Thanks that is reassuring - I look after my health now!
 
12:48 Dr Mark Edwards: 
No problem!
 
12:48 [Comment From SumeetSumeet: ] 
Thank you, that's extremely helpful
 
12:48 Dr Mark Edwards: 
You're welcome
 
12:53 Dr Mark Edwards: 
Just to give you all some links which you might find helpful in addition to the clinical trials website detailed above:

Parkinson's UK: http://www.parkinsons.org.uk/ The largest UK charity for people with Parkinson's disease

The Cure Parkinson's Trust: http://www.cureparkinsons.o... an excellent charity supporting research in PD.

The Michael J Fox Foundation: https://www.michaeljfox.org/ A large US charity for research in patients with PD, which also has lots of information about PD itself and its treatment.


Monday April 27, 2015 12:53 Dr Mark Edwards
12:56
Dr Mark Edwards: 

Thank you for joining us today in our live web chat. We hope you found the chat useful and some of your questions have been answered.

12:56 [Comment From GuestGuest: ] 
As I have right leg pain from back to all down to my ankle, I have difficulty in walking,, I seem to shuffle could you give me any idea if I might have Vascular Parkinsonism? Thanks.
 
12:59 Dr Mark Edwards: 
From the information you have given it is a bit tricky to know if some form of Parkinsonism is likely. Generally vascular parkinsonism (where blockage to blood vessels in the brain - effectively lots of tiny strokes - cause some Parkinson's like symptoms) causes symptoms in both legs and does not cause pain as a major symptom. It sounds like you could benefit from seeing a neurologist to assess you in more detail.
 
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