When I was first showing symptoms, I told my general practioner about them as they developed. Starting with right hand weakness [tested negative for arthritis]; i was there it seemed at least once a month with something new. i was diagnosed with hypothyroid and i can remember him saying , women seem to have a rougher time of it. Childbearing and hormones can cause many problems.

When i went in with toe curling he called it neuropathy but didn't treat it or diagnose anything.

Finally i went to a neuro on my own, was diagnosed, and when i told my family doctor, his jaw literally dropped. He had never given pd a thought because i was too young.

So it's only recently that pd is even suspected when you are younger and many doctors are not trained in young onset pd. Neuros should be aware but are they really?


paula

That plus Laura's quote:
"Further, why don't our PD orgs begin a newly diagnosed patient education campaign to recruit newbies for clinical research?"

My reply: MJFF is currently recruiting patients for their Parkinson's Progression Markers Initiative (PPMI), a 5 year study to collect data that hopefully will discover biomarkers that can be tracked to objectively measure disease progression and be targeted for drug development. This should also go a long way in determining the nature of the disease itself. Read all about it here.

There are 18 sites worldwide; all are in the process of obtaining IRB approval, and will begin active recruitment within the next few weeks and months.

They are seeking newly diagnosed, along with PD-free controls, and will be mounting an education campaign to recruit newbies. MJFF is learning a lot about the business of clinical trial recruitment in general in this process, and, I believe, will be doing more of this kind of thing in the future.

MJFF is having a PPMI community education event in Seattle later this month at the University of Washington. Please PM me for more information.

There is no doubt in my mind that the greatest minds we know who research PD are well aware of the concerns raised in this forum regarding the reality of the disease itself. They understand that the failure of recent clinical drug trials may be the result of a participant pool that represents different diseases. I know that MJFF is listening to patients, and that many of the scientists are as well. We are no longer just whistling in the wind; keep posting and keep the discussions going!

How can someone with PD and not taking meds be perceived to be rubbing salt in the wounds of a PWP taking meds? We're all suffering from the same thing...

Hi All,
Good discussion and here is my two cents worth.

While I agree biomarkers as well as PD subtype classification studies would help to resolve a lot of unanswered questions and provide new information possibly from old "failed" clinical studies. This is only a start and there is a long way to go to find a cure/even disease altering therapies. We have biomarkers for diabetes, we know the cause of it.....still there is no cure.

L-DOPA may very well be toxic. At this point, there is nothing but L-DOPA and each of us have to make a decision as to if/how much we want to use.It is a compound that works in the brain, released just for a few milliseconds to exert its function and is highly regulated under normal conditions. Taking such a compound orally for extended periods of time bound to cause some damage.

Just as each one's PD is different from the next one, our treatment options are too. The best part about this forum is we get to hear all sorts of theories, treatment options and different opinions. Thats why I come here.

Girija

Thank you and hello Trixidee. There are a few hostile posts but not most. When you consider what people have and are been thru. They hurt themselves not me PD drugs do have very strong adverse effects. No neuro doc or drug rep can separate the PD symptoms vs PD meds side effects once you are on them.

Jak

Sometimes at work people bring personal problems to work. Its bad. It happens more easily from behind a screen on a forum. Its bad too.

Life is not easy. You dont expect no discussion on early PD diagnosis on a Neuro form do you? No thats silly. The issue for some is and im being blunt here is that many people are on PD meds and have been for years at increasing doses and hearing about others who are not on them and perhaps have milder PD or wrong diagnosis . com is upsetting. Fine. I understand that but let that be on the table

Jak

You have been made welcome here, and you actually are welcome, we like newcomers, once we were that ourselves. Because we have been taking PD meds it does not mean that our brains have rotted, or that we are somehow less for it. Yes, we have our uphill struggles with PD, but first and foremost we are just people......

You say you are being blunt - Well, I am going to be blunt. We have had many many people come here looking for answers, newly diagnosed, and friends and family of newly diagnosed, and we share with them what we can, because we remember what it was like and we know what is is going to be. Mostly we are very open minded here and say pretty much what we feel, and no hard feelings. Occasionally things get a little bit fierce, but only rarely. On the whole I would say this is a community, a pretty good one...

There are many people here who are regular posters who do not hide 'behind a screen', many know each other and communicate in other ways, and there are some of the finest activists in the PD world here too. I've been coming here or to the forums that preceded this one for around 8 years, and I am still humbled by the big hearted and amazing people who have helped make this forum what it is. There are also many people who do not post, but nevertheless visit, some are like you , new to this place, others have been here a long time, only post when they really feel like it, some of them are dealing with the very thin end of the wedge with PD.........

It is easy to think you know a lot and to think you know better, but this place is quite a good reflection of real life, the more you learn the more you realise how much more there is to know........

I happen to agree with some of the things you say, though I can't say that I agree with the way you are saying them..........

Lindy

Lindy a lot of people posting here have been welcoming and I appreciate that. Some agree with my views some dont. Discussion is healthy. Niggle is not. I dont do niggle and in person and on a forum will say so. Track the thread sequentially and watch where the niggle starts.

As to knowing more, or smarter as someone said. No. Even though I have two degrees in Health care, so what, still no. That's why we do forums, because we dont know. But a Newbie on a specific forum does not mean a newbie to life either.

The thing is here on this forum we are dealing with big life choices. The stakes can be high, for us our loved ones, quality of life, careers. While say at work I play my role, do my job giving and following orders, then I go home and forget it.

With big life issues like PD, I and I suspect many others, want to chart their own course, issue their own orders as much as possible. This isnt a game. Another thing with forums is one is not obliged to participate in a thread just because one belongs to a forum, as the hundreds who view only attests to. IMHO rather than say anything negative it may be better to say nothing at all.


With that as a basis of understanding I am more than happy to be welcomed and be welcoming share and share alike. But if a poster does say something inflammatory or niggly that gets past the mod, well it will flavour the next post or two when they are replied to in turn

Jak

"IMHO rather than say anything negative it may be better to say nothing at all." alongcamejones.
don't you mean "disagreeing" ??
you aren't here asking for opinions other than those that agree with you, offer a treatment you yourself have not tried, suggest we go off meds which can be life threatening, have no need yet for meds yet advise us on them, openly express contempt for the medical establishment and present your opinion as fact. again, why are you posting here? for personal amusement?

Jak-

I highly recommend the "Ignore" option that comes with these things. You are welcome here.