Another forum category


#1
I was wondering if it might be interesting to have another category in the forum where we can raise questions about the nature of the disease and treatments and have input from professionals? Us pwp might have a view on these things which might or might not be rubbish, but we don't ever get any comments from professionals(preferably polite understanding ones).
I believe (on the whole!) that pwp are better of if they understand more about their disease but if we are only talking amongst ourselves, that will be limited.
Obviously, it would not include diagnosis or individual treatments, but would be more about parkinsons in general.
I am sure there are some professionals out there who would participate.

#2
that should be 'better off' with 2 fs

#3
Dear turnip,

Thank you for the suggestion. We think it's a great one.

This is what we were hoping the Q&A sessions would be. Maybe you've seen the ones we've had so far?

After each session, we do ask for feedback from those who participated including the topics they would like to see in the future. We are planning one of these events every two months and we have experts scheduled until March of next year.

It would be good after the next session to know whether it was useful to you and how you might improve it. The next session starts tomorrow and will cover sleep and nighttime problems.

Best,
Ezinda

#4
The National Parkinson's Foundation has a Forum of this nature.Actually they have more than one depending on which expert you need for your question.

#5
Turnip: Your idea is a good one. I made a similar suggestion to the PDS via its Research Director. Much more use could be made of the Forum. for example it could also be used by researchers to acquire data from PD sufferers. Some researchers report that people who take anti-inflammatories are less likely to develop PD. Some believe that inflammation of the brain could be the cause of PD and thus PD sufferers might benefit from taking NSAIDs, but a research trial would be needed before this could be confirmed. It would be useful to establish whether any PD patients have noticed a diminution of their PD symptoms when put on NSAIDs to treat other conditions such as arthritis.

It would also be interesting for researchers to find out whether many PD patients do suffer from inflammation of several other other body sites: scalp, nose, groin ( candida) etc.This sort of exercise could be carried out via the Forum.

I believe that the PDS is thinking about these possibilities and therefore it would be a good idea for anyone who supports these proposals to contact them directly.

#6
I am an infrequent visitor to this site and I have just noted that the PDS has opened up a Q&A forum on specific issues. That is a good idea.

#7
Forgive me if this has been suggested before, but how about a Q&A session with someone responsible for DA prescription and monitoring guidelines or at least a neurologist who knows what the guidelines are and where they come from? I think there would be a lot of interest in this subject.

#8
Turnip: I can see where you’re coming from and I admire your initiative, but why engage an ‘expert’ when we have so many people with first-hand experience of DAs on this very forum? As you have stated on another thread, we and/or the people close to us are the experts, the professionals, not the people who see us for a few minutes every six months. Armed with the right information, perhaps we can start advising them.

Whilst I think it’s important to describe the experience – good or bad – I do think the type of DA and the dosage which is/was being described should also be included. Perhaps this might allow for some sort of pattern to be established … perhaps not.

Can I suggest something like the following? (The answers are mine.)

DA: Mirapexin. (Transferred to Prolonged Release after 3 months).
Start dose: 0.264 mg per day.
Highest dose: 1.05 mg per day.
Time it took to reach highest dose: 3 months.
Length of time on highest dose: 5 months.
Side effects: none so far, although slipped back temporarily after changing to PR.
Sleeping pattern: 5-6 hours per night (but this could be a side effect).

I’m quite certain that improvements can be made to the above, and it will need to be tweaked as we go along, but I don’t think it’s enough to say: “DAs wrecked my life” or “DAs are wonderful” without giving more precise information.

(Let me just say that, as a person who hasn’t experienced any of the side effects of DAs, I fully expect to be ‘flamed’ for my naivety!)

#9
hi Lily
my suggestion of an expert wasnt to learn more about DAs but to learn about the rules and guidance that prescribers work to. I for one, dont know whether NICE is more important than the institute of neurology etc. in determining prescription, and more importantly monitoring, policy. If we actually want something to change we need to know what that something is.
Your suggestions on mirapexin might be right on but if its not in the guidelines its not going to happen.
So I am suggesting that the forum invite someone familiar with the guideline process to explain the current guidelines, answer questions as to their validity and explain how patients and carers can input (such as your suggestions) into changing them.
I think basically we are on the same lines.
cheers

#10
one last thing before i shut up,
to me there are three aspect to the DA question:
the past - people whose lives have been destroyed need to be able to share that experience on the forum, and they need compensation - why isnt Parkinsons UK campaigning for compensation?
the present - those suffering now need help and advice
the future - guidelines changed to stop more instances, hopefully with the help of Parkinsons UK?

zip.

#11
Well I guess that's me told!

Double-zip.

#12
Plodder said “for example it could also be used by researchers to acquire data from PD sufferers.”

Whilst I agree, it would be in contravention with the rules and terms set out by PD UK in so much as it states, "Forum terms and conditions we all agree to when signing up for this forum".

3.1 You agree that you will not use the discussion forum to:

“3.1.13 use the forum to gather information for research, surveys or similar;”

That means that the rules would have to be altered.
ncn.

( Not trying to be negative but if we have to follow rules then they need to be made clear.)

#13
Hi Lily
i apologise if i appeared to be telling you off! thats the last thing i meant. its just the way i put things. without vearing to condescension i thought what you said was very useful.
best wishes

#14
No need to apologise, Turnip; my reply was made tongue-in-cheek, although it’s difficult to get any subtlety of meaning over in this environment without sounding either offended or offensive. Having said that, I can’t deny that I was feeling just a teeny bit frustrated when I typed it.

I do take on board what you say about the drug guidelines though, because my own neurologist ignored those at the start and put me on a much slower increase trajectory than that recommended on the leaflet.

ncn makes a valid point, but I can’t help noticing that my posting hasn’t been removed yet so perhaps it isn’t breaking any rules after all.

There is another thread on this forum which, having a closed question for its title, requires only a yes or no answer. Of course, we’re all going to answer “yes”; we would be stupid not to. The question is then followed by a thinly-veiled threat which I can only imagine is made to deter anyone from entering who has not suffered OCD as a result of taking DAs. Some hapless souls have ventured into that particular lion’s den to try to reassure those currently taking DAs, only to be either ignored or torn to shreds by the OCD sufferers, and the result is that any potential for debate has been largely stifled as the victims of DAs are virtually the only ones left in there. It's clear that that's the way they want it, but the non-sufferers are now being told that they have a DUTY to join the fight!

I’m happy to put my name to that, but no-one ever seems to mention the amount of medication they were on when they started to suffer side-effects. This, to me, is crucial as it’s not clear whether some people are ultra-sensitive to certain brands or if OCD is always caused by massive (or even slight) over-prescribing. There must be many people who are currently taking DAs and feel the need to increase their dose, but are afraid to do so by this lack of information.