Hi i haven`t been on the forum for a while mainly because i keep feeling quite confused. Don`t get me wrong i really enjoy reading all the comments and interaction but i feel the more i know about parkinsons the more i worry.
I was diagnosed nearly 3 years (in Aug) and have felt quite positive, i did lots of research on my symptoms before dx but since them my consultant recommended that i didn`t. I constantly think about the future, am i getting worse, what new meds will i have to take, possible side effects. I know this is natural but i reckon not knowing kept me sane! I feel so lucky my pd isn`t as advanced as some and i can lead a good life,i still manage to do every day tasks if not slower & i`m taking control of my anxiety at last (with the help of medication). I just wonder if any one else feels like me? is it best to be prepared or is ignorance bliss?!
I think it has to be better to be prepared, despite the pain and anxiety that means we have to face.
I know that att some time in the future there will be some difficult decisions to be made about my life, and if I want to have a say in all of that, AND I DO, then I need to be informed, I need to be able to present my arguments and reasons.
I know exactly where you're coming from Big C. I love the forum and read it for a long time before I actually registered and started to contribute. The people on here are, to varying degrees, well informed, friendly and often very witty. At first it was a relief to find people who know exactly what you're going through but as time has gone on I have become more aware of the situations of other pwp, further down the line than me. I have to admit it scares me. As you say, would it be better not to know? I don't know the answer but I do know whatever comes to me it will be made easier by the fine members of this forum.
I keep as well educated about PD as possible, not so much to find out what lies ahead but to help GP's and other medical professionals that whatever currently ails me is or is not PD related.
I've read up on all the symptoms but these drift into the back of your mind and you just get on with what your doing. Despite the knowledge when another symptom arives it still comes as a shock. At least you know your not going mad.
tap. tap. tap.
Whats that sooty. Tell the boys and girls, don't worry about a ting, coz every little ting is gonna be alright do do do do do.
No I don't think I will sooty I'll leave that to Bob Marley & Cockney Rebel.
knowledge is power truth is beauty sooty is 64 he was sold for 300,000 pounds in todays money harry corbett played piano in his uncle harry ramsden's fish and chip shop
a glove puppet can earn more than a neurologist, in some cases quite rightly.
Hi Big C thanks for your message i was dx 14 months ago and come on the forum now and again i get very confused a lot of the time and think its better for me to see my pd nurse concerning meds and treatment, Like you i feel ignorance is better sometimes Take care chris 46
Hello Big C, I think that if more and more 'knowledge' makes you anxious then its not good. Thinking ahead and imagining the worst things are going to happen will make you more and more anxious and then those things will happen.
My h has lots of difficulties because he is blind as well as parkies and has a bad back like bones being out of place and because of hallucinations he takes limited medication BUT he has a good positive attitude, sometimes veering to stubborn. He is determined to put a brave face on, make light of it and tries to keep his thoughts to here and now. The neuro told him he is doing really well despite his difficulties because of his attitude.
I think it is really important to just go day by day. and remember that everyone's parkinsons if different. I think in the future they will have many different categories of it, some do not progress very fast at all.
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.
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...
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!
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
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
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.
