The answers to the Q&A session on non-motor symptoms in Parkinson's have now been posted.
Scroll down to the Q&A forum to see the answers to your questions.
We are grateful to Dr K Ray Chaudhuri for his participation.
Scrolled down and tried both links but couldn't find any Qs or As!
Is it just my senility? More instructions needed. Thanks.
Can you get there via:
Home > Forum > click on "About the Forum" ?
That should lead to 19 pages of Q&As.
Go to the front page "Welcome to the Forum" scroll down to the bottom of the page. The last item is for the Q & A's. Click on that and you will find that each Q has it's own heading.
Found 20 Qs and AS.
I've got a question! .... Hello ... Cough
Pins & Needles in the Feet
In the Q & A section, Professor Chaudhuri was asked the following question on the above topic:
I have had Parkinson’s for 13 years, since I was 47. Can you please tell me if aching muscles and pins & needles in the left foot are natural? Thanks.
The professor responded thus:
Aching muscles can be caused by many things from anti-lipid drugs (such as statins) to primary muscle disorders (e.g. polymyalgia rheumatica). Aching muscles in Parkinson’s may occur at night due to muscle cramps or general dyskinesia, but this is rare.
Pins and needles are unlikely to be related to Parkinson's but could be due to a trapped nerve. The fact that these are in your left foot could suggest that the trapped nerve is in the back at the 4th or 5th lumbar spine level.
Speak to your doctor about painkillers and ask for a referral to a physiotherapist.
I believe this response was incomplete, but I was unable to reply to it, as the topic has since been closed.
I therefore posted a reply in the "Treatments" section of "Latest Activity":-
The good Professor Chaudhuri is misinformed if he believes there is no connection between pins & needles in the limb extremities and PD. It is known as formication and there are many posts on this forum about it. It is VERY common, and believe me it can be EXTREMELY painful.
Could you enquire as to whether the Professor would like the opportunity of responding further, please?
I have to agree with RoS that a Q & A session with one question and one answer is of limited value. I know the specialists have limited time but at least one (and preferably) two follow-up questions would add enormously to the value of the exercise.
Once again guys....who knows best, we the people living with this condition or those treating us? Pretty scary I think!!!
The average GPs knowledge is zilch, PD Nurses are a disgrace and some neuros shouldn't be allowed to water the plants in the waiting room. Gosh I feel better after letting that out. Better out than in as Granny used to say after farting.
You should try and ask the Neuros advice on which Anti-depressants are best used in parkinsons and the interactions between them and the various Parkinsons drugs we are prescribed.You would think they would/should know.It,s laughable.Why am I not laughing?
Mind you,G.P's are no better,unless the problem is blatantly obvious to them.
Having spent years suffering (and I mean suffering) from extremely painful pins & needles varying from partially disabled hands/feet to almost total paralysis, it was disappointing to receive such cursory and inaccurate feedback, which scores of pwp KNOW to be incorrect. I frequently discuss this problem with other members, and it is often a patient's single most dreaded symptom.
A common complaint is that it is such a curious bodily feeling that it is virtually impossible to describe accurately to someone who's never experienced it. That was why this opportunity could have been so useful.
The assigned expert was introduced as a consultant neurologist and Professor in Neurology and Movement Disorders based in London, with a long-standing interest in the non-motor symptoms of Parkinson’s which can have a substantial impact on the daily lives of people with Parkinson’s and their carers. We were informed that he had established a number of tools to help identify symptoms and to aid discussion amongst health care professionals.
Having raised our hopes so high it was a real shame that our queries went unanswered.
Thanks for this feedback everyone.Ray
, I have sent your question back to the expert and if he is able to answer, I will post his response in the Q&A section below.
I’ve mentioned this point before but this is a good opportunity to remind all: You asked the question during a weekend and during the weekends we’re not in a position to respond with full information or to take further action. It would help so much if in the future, you could give us a chance to respond during the week.Turnip and Glenchass
, I am disappointed to hear that you find the Q&As of limited use. In the time that they have been going on (over 2 years now) we have asked for feedback throughout and that has been overwhelmingly positive.
I can take your suggestions here into account but of course the events are meant to be an additional opportunity and really should not replace a consultation with a clinician or other expert. I’m not sure that each person asking several questions in this format is realistic.
It would be great if you could let me have further comments on the feedback form that we include with every session. This one can be found here: http://www.surveymonkey.com/s/qanda-nonmotor
We’ll gather the responses from this and will look at whether it is useful to continue with these events and if so, whether another format might be more suitable.
Hello Ezinda, I didnt say that the thread wasn't useful in fact in the past i have found it quite useful, however I'm sure a lot of people would agree that the answers surely should be correct. In the fore mentioned topic of pins and needles the doctor was in fact wrong.
I'm sure that we have the right to point this out and in fact comment if wrong advice is being given to other pwpd.
Much as it might pain you Ezinda, doctors are not always right and there is a severe shortage of medics that have a good understanding pd and as such the patients experiences and views are critical.
As I mentioned in an earlier post, I've taken the question at issue back to Professor Chaudhuri. He has provided a clarification which I've posted below in the Q&A section.
I can let him know about any further issues regarding this question (which you can feel free to post here or send by email to us at forum(at)parkinsons.org.uk) but I'm afraid we won't be able to post any further responses from the Professor.
I hope this helps.
Many thanks again to the professor for his time. In response to his new reply I note the following:
1. Having restarted the discussion, the doctor's new thread has been immediately been closed off again, preventing any further debate.
2. Ezinda's statement in her latest post that "we won't be able to post any further responses from the professor." seems unlikely unless the chap is now dead, or has left to become a minicab driver. I'd suggest it's more likely that he's a bit miffed that he's taken on this role for us but then his response has been shown to be wanting. The correct phrase here should thus be "we won't be able to get any further replies from the professor on this subject."
3. We all know how hard it is for "real-life" doctors and consultants to accept being told by patients that they're wrong, or that a second opinion is requested. They become very irritated and defensive. This Q&A exercise permits us to take topics and debates that one step further, due to there not being any eye-to-eye contact. This benefits the patient at the expense of hopefully extracting better and fuller answers to our queries.
4. It does put Ezinda in some awkward "piggy-in-the-middle" situations though, from time to time. Being a referee between pwp's who may be perhaps a trifle over-enthusiastic and refined, aloof experts who are not used to being cornered is a tricky role requiring excellent customer service skills.
Anyway, in his first response on the Pins and Needles question, the professor said that "Pins and needles are unlikely to be related to Parkinson's", whereas in his latest he says "In fact, pins and needles occur in various forms in Parkinson's". The exact opposite!
Ray (and everyone),
I do hope that you have found this Q&A useful and that the last response provides a clarification to your question.
I’d like to take this opportunity to clarify a few issues:
The Q&A thread has been closed for further questions since May 28. Closing the thread on a specific date has been the norm since the beginning of these events.
The Q&A sessions were never intended to be a debate but an opportunity to put questions to an expert for a specific period of time. Where clarification on an answer is needed, you can feel free to send me a question by email and if possible, I will ask the expert to answer. Where this is particularly important to the forum community, I will pass that sentiment along to them.
If I say that I cannot post any further responses, this is because the session is closed and we cannot go back to ask more of the experts who have volunteered their time. If this is the case, I will usually offer an alternative which will usually be the helpline where community members can get more specific information.
Ahead of these sessions, we do spend quite a bit of time finding the experts, telling them what they expect from the session and walking them through previous mentions of their topic on the forum and the culture of the forum.
We are grateful to our experts who volunteer their time to take part in these very popular events. I hope that when I approach future experts to take part that they will feel as if they will be welcomed and respected by the community. This should be the case even if members of the community disagree with what they have said.
Again, we always ask for feedback on the individual sessions and would like to hear from you about topic ideas for the future which you can let us know about at: http://svy.mk/N3s55N