I have just read one of Titan's posts where he was hoping that some neurologists were following this forum to learn by it. My PD nurse says she follows it and learns from it, which was encouraging. I don't why, perhaps I'm becoming more cynical in my old age, but I can't imagine there are many medical personnel following this, especially neurologists. I hope I will be proved wrong. Could anyone who fits this description let us know if they are doing so by posting here? It would encourage us all. Awaiting hopefully, Butterfly.
I don't think your being cynical at all, i also don't believe there are any neuro's who currently read the treatments section of this forum, let alone any other part of the forum? I raised this point at the recent OCD steering group meeting in London and nobody disagreed with what i said. One of the action points that should appear on the meeting minutes (when they do them), is for PUK to find a way of raising the profile of this forum among neuro's. In particular picking up on titan's point, when someone is first seen by a neuro they should be automatically told about PUK as a point of help and support and about this forum. Hopefully at the same time this will at least raise the profile of the forum in neuro world. When i asked my own neuro a couple of years ago, if he had ever looked at the PUK website or read the forum, he said "what website and forum"......
Hi Butterfly / Blue eyes.
It was my Neuro who suggested I look for this site and my PD nurse did the same when i went to see her. So I guess at least some of them at least know about it!
Whether they look at is another matter
That's great your neuro and PD nurse pointed you in the right direction. However when you say they both told you about the site, do you mean the PUK website in general or specifically the forum?
I'm sure some neuro's and nurses do point new patients in the direction of PUK, however i think very few neuro's, if any are aware of or look at this forum? I personally believe its a missed opportunity for them too broaden understanding of certain aspects of living with PD. In particular the non motor challenges of PD along with issues around medicine side effects, etc. Just look back over recent years at the number of forum users who felt more comfortable discussing sensitive issues on this forum with amenity rather than a face to face discussion with their neuro? I feel sure something positive would come from every neuro spending 20 minutes a week just trawling through topics like treatments and daily living.
In my humble opinion the best neuro's are those who are closest to their subject matter in every detail. Far too often in this modern world we live in, the defence from those in responsibility when a problem finally comes to light is; i was unaware there was a problem! I believe this forum is a "grass roots" information sharing site for those living with or affected by PD. Any health professional worth his/her salt should want to gauge what's happening at the grass roots of their subject matter, should they not?
all the best
I totally agree with everything you've said Blue eyes and Caroline. Both the neurologists I have seen even said things that were definitely untrue, and they were things they would have known had they got down to grass roots, rather than just reading from textbooks. I agree that they should have to spend some time following a forum such as this. Of course, at about £50 an hour for a consultant's wage (my guess) that could work out quite expensive, because after all, it all seems to boil down to money now. I told you I was cynical!
When I spoke to my Gp about my husband s Parkinsons and I also told him I go on line to search for all the info I can find . He told me it was the best thing to do and also talk to as many others with the same problems . What agood idea though if they did come on this site to see what sufferers and their carers are saying . They would learn such a lot .
Have to be careful here not to be indiscreet.
I know of one. It was mentioned to me recently. All apparently on account of my questioning the man in question on the subject. He, I am given to understand, was surprised and suitably humbled after dwelling on the site.
Opinions that he held, especially with regard to such early onset symptoms as loss of smell and taste, which he previously dismissed with a curt wave of the hand, have changed.
Do not be afraid to broach this with your consultants folks. It may yield results.
That's a really good idea. If each one of suggested this to our consultants, that would add up to quite a few.
With the risk of being cynical, if I was a Neurologist and logged onto this form I just might decide to change jobs.
With all the bickering and arguing that goes on it doesn't really make that good an impression at times.
In fact, I think we risk selling ourselves short with regards to this and it takes at times; pages of posts to wade through to find a topic that is being discussed without someone getting their "knickers in a twist"
( Can you use that word Knickers , oh well I just did".)
Perhaps if we want more people to join the forum and by people, I include the medical profession; we need to try and be more user friendly to ourselves and others.
(IMHO) It's the only way we will be taken into account and taken seriously.
There are some really good threads on here but it would be a pity if someone is put off because they are shadowed and hidden by poor conduct.
A friend of a friend was recently diagnosed with parkinson's and the consultant explained his new drug regime and then ,as he was leaving, smiled and said " and you might find yourself taking up gambling!" as he gave a little chuckle.
So all is well and neurologists are now giving accurate info and appropriate warnings!
Hello...all .re the question do any of the professionals
look/are aware at/of this forum ... my Neuro..gave me a contact no..and
an E.mail adress..if and when in a matter of any urgency .. he said that he is aware of this website and does when time allows trawls through the forum..he also stated that he sometimes has with E mails in effect what turns into an online mini clinic so he must be an exception..being a bit of a whizz on the computer..he referred me to our P.D. practice nurse which I am very lucky to have
anyways I thought I would share this one you
Keepup the good work and try not to let Mr P get you down I too get my off days
which are starting to get.. unfortunatley more often
Regards to everyone ..Ian (M)