apologies big c, here is some serious pontification:

the medical professions are only human, sometimes very human. if you have an unusual condition it doesn't take long for the average GP to get to the limit of their experience. i have also heard qualified neurologists say things that are stupid or plain wrong. i have also had the wrong prescriptions or dodgy combinations of drugs. the more you know the more you can judge the advice you get and be responsible for your own safety.
secondly, the more you know the more you can get out of newspaper or magazine articles on treatments and research, especially 'the big breakthrough' type thing that is usually nothing of the sort.
thirdly the more you know the more control you have of your own fate - the effects of diet, exercise, supplements. no-one else cares about your health as you do or has the time to find out what fits you as an individual.
fourthly your neurologist will treat you by how she or he categorises you. if you appear to know nothing they will treat you like a kid, if you appear to know more they will start to treat you like an adult. ideally you want to be in a partnership with your neurologist - being able to understand in more depth means more meaningful conversations about drugs and side effects.
lastly, knowing the future - you can't. knowing the progression of the disease as it is now is not knowing how it will be in ten years time. it is not good to dwell morbidly on what might or might not be the case in 2022. it is more important to understand the situation you are in now as much as possible to make the right decisions now. that's not to say we should keep ourselves in the dark, but is healthier to focus more on what treatments you might opt for in 10 years time rather than on what disabilties you might have. ie you might get DBS and get another 10 or more years of functionality, or there might be other treatments with similar results but less invasive.

Hello BigC

It is a good question do we remain ignorant to this PD or gain knowledge about what things will be.
When I was first told I had PD I wanted to know everything about PD and what the future would hold having this cruel disease. Not good reading!
We as individuals cope differently with how we prepare ourselves for the future ahead.
I do not look to the future because it all seems bleak, well for me. Take my time and enjoy every day, especially the good days. Never think of what might of been and no regrets, this is my life and I am still living it. Try and enjoy everyday and refuse to think ahead.

Take care and I wish you well love PB x

ps. A good sense of humour helps , don't ever lose it...

Hi Big C,

After DX 1 yr ago my neuro suggested i shouldn't look into the Internet too much, he even told me to 'go away and forget about it' this was his best advice treatment wise (along with a few pills!) Well he didn't know ME!!.... i wanted to know what this Parkies involved good or bad, after all this was now my future! Yes it upset me and i still worry constantly and i can't get my head around the fact that i will change...But....i am a realist (i think?) and one year on i feel better equipped in MY decisons regarding medication and how My body is doing. I wouldn't have had a clue about this if i had listened to my neuro's advice. So yes, finding out about things and understanding that i am an individual in this darn disease has been important to me. I have read about the bad times but also the good/inspiring stories. Awareness has been key for me so far and i feel better equipped in understanding what may/maynot occur, also this forum has been invaluable, people who know what their talking about!

Best wishes

Diane

Thanks for all your reply's it is interesting listening to other peoples thoughts on this subject. I think we fall into several categories

i.e

A - those who need to know every thing good or bad!
B - those who need a little info in order to understand!
C - those who bury their heads hoping it won`t happen!

I think i fluctuate between B & C but i only want info if its good! That`s probably a reaction most people have. I think (in my case) if i`m told what may/may not happen in the future i convince my self i already have symptoms. I know i sound paranoid but put it down to menopause (at least us 50 something lady's have an excuse!). To be serious i have a really good neurologist who listens and is very understanding. He never rushes me and will answer any question truthfully without frightening me. I never feel like i`m being kept in the dark, he seems to wheigh up the situation and only tell you as much as you need to know and always gives a positive vibe. I know the neuro consultants don`t know everything about pd (how can they) and everyone who suffers from this awful illness is different but i honestly feel a little bit of info is better than an overload of details that may never affect you! Lets just hope and prey a cure is found in the near future

Big C

Hello Big C,
Your Q is indeed interesting. I think it is a very personal decision. For some ignorance is indeed bliss. What will be will be & we will react accordingly. For others, a little knowledge is a dangerous thing - google headache & convince yourself you have a brain tumor.
Myself, I just have to know , not what lies in store for me (& who would know that?) , but what is the possible explanation of what is happening in the here & now. This is me with or without pd. If I do not understand what somebody is saying, I will ask or look it up.
I agree with turnip that as a neurological patient you are treated differently if you show that you have some knowledge of your condition. I was told for years that my symptoms were due to anxiety/vertigo/ benign essential tremor. When eventually dx with pd, my GP actually visited me at home to apologise. He had accepted the hospital dx without Q, and admitted that he knew little about pd.

One of the main reasons that I continue to use this forum is that I am made aware that variation in type & severity of pd symptoms is part & parcel of the condition, not a sign of me getting worse or going crazy. Also the "coping tips" that can only come from someone who has experienced the same.

At the end of the day, I suppose that how much you investigate pd depends upon how much knowledge you feel that you need and how much you feel that you can cope with

Do what you feel is best for you.

I wish you all the best
AB

Sooty got involved because he tapped the table or tapped my shoulder before he whispered in my ear.

Sooty should be an inspiration to us all.

Despite his inability to move or communicate without the aid of a career he has successfully carved out a lucrative career on tv and endorsing cereals. He also had his own band.

Sooty for celeb parkinsons prezza.