Dear Kawerau
Whether you are still reading the forum or not i dont know but there are one of two things that i would like to get off my chest. Perhaps, simply to make myself feel better.
I would have sent you a private message but you dont accept them so i have no choice but to leave it or post here....leaving it is not my style when i have something to say.
Firstly, im sorry that you feel you need to leave the forum. I know nothing about you, male, female, age, nada, so im not judging you please believe me.
I appreciate your comment that you think im a kind, caring person. I try my best but im not perfect! There are just one or two things i want to say....

Harberlights asked the question, is PD a terminal disease. He/she had only made a few posts and was obviously going through the early stages of trying to make sense of what is happening (apologies to Harberlights if you are reading for bringing you up).

You replied with a, 'I thought long and hard about posting this..but' post. You then went on to give us a load of 'facts' about people having PD on their death certificates. Basically, i glossed over those 'facts', but I was upset about the fact that you had posted it in response to Harberlights post. Perhaps (in my opinion you should have thought a little more about how he/she might be feeling and the stage he/she is at in acceptance. I sincerely hope that having read your post Harberlights hasnt thrown him/herself over a cliff!
Basically, what im trying to say is that your post WAS upsetting. That doesnt mean that i have a problem with you but that i think it was insensitive. I had a very nice email from someone who's husband has PD saying the same thing. I think you should know that i lost a whole night's sleep after your post. Not because of what you said, but because i was concerned about how Harberlights would take it and cross. But that's just my way.
Ive said and done some regrettable things on this forum over the last year but two steps forward one step back. Dont leave, just accept that people can be sensitive.
Also, please dont pre-judge other people that you dont know. Why is Lukey nuts? Why am i and ECD kind and well-meaning (i hope i am)? We are all in similar boats with different ways of expressing ourselves. Some are braver than others in doing so.
You posted a link re PD. I for one dont want to read it. My husband was diagnosed at 49. You say that the prognosis for younger people is not good but i for one dont want to know. Im not totally stupid and have done my research but you do seem to be flagging up the pitfalls quite a bit. I hope you arent offended by this post. Perhaps you really have gone and arent reading it. But, i needed to write it, to declutter my mind of this issue.
If someone new comes on and asks if PD is terminal, a more gentle, supportive approach may be more considerate. Ive said my piece, Ive drunk a bottle of wine. That's my downfall. We all have our vices problems. Dont leave the forum. I truly believe a good debate is worth having.
Sorry if ive offended you (or anyone else)
Take care
Carrot

Carrot,

Despite your bottle of wine you have expressed all that I felt too.

kawerau.

Thanks for your last link,(not). It was just what those diagnosed in their 40's and earlier did not need.

Just as most people think before they open their mouths, I try to think before I post on this forum. You clearly have not considered the implications of your recent posts and their possible affect on some members and those looking in on the forum for help, support and advice.

I am a realist but the posting that was bookmarked was only talking about a mean average.That does not mean that any one of us will not live a long life.
No good always looking on the black side. John and I, feel that however long or short our life is we should make the most of it.Of course, we wish he had not got P.D BUT it has made us live every moment to the full,take as many holidays as we can afford and most importantly appreciate each other. So if we are both run over by a bus tomorrow we will have made the most of our life

Of course,some of us are further down the P.D road than others and some of us are affected in worst ways than others. but what I am saying still applies. To us, making sure every good moment counts is what is important. Instead of saying I may be cheated out of X number of years, rejoice in the fact that despite P.D, one can still enjoy many aspects of life. No not Pollyanna, just trying not to waste time mooaning and not appreciating what we do have.John may have a slightly shorter life span than someone else and there will be frustrating time, but he will have fitted in his life much more than someone else who may live much longer.

I was told by my specialist nurse that PD may shorten your life (whatever that might have been going to be - who knows) by about four years and he did not qualify that as to how early the onset was. I presume that this comes from insurance statistics and their calculations have money riding on them.So its all relative. So the "facts"quoted by the over blunt contributor may well be from the internet where every "authority" I read seems to contradict each other. At the consultation last May when I was given the dx I asked what the prognosis was. (I am seventy.) He said brightly "About 15 to erum 20 years". I replied a bit sharply well it all depends on how long you thought you were going to live. My mother died aged 99 and all her family are long lived. I am lucky as I can rationalise the whole thing as at my age there was never any guarantee that something was not going to rear its ugly head although up till now I've never entertained the possiblity that I would not continue to be "wonderful for my age" more or less for ever in spite of several big hints from mother nature in the past two/three years fromm things I now realise tohave been related to the PD. Regarding syndrome or disease isn't the new name for the Society just the Parkinsons Society?

Hi Folks

A belated happy new year to you.

My Gosh what a post to put on here, and I refer to the one placed on the 23 Jan 2010 at 21.57

Whilst I agree we all have a right to have our say and also quote facts and figures and try and cover ourselves by issuing health warnings, there is such a thing as a duty of care.

We have to think of the Newbies and those who are very young and recently diagnosed etc...........

There are many differing views, thoughts and statistics as well as reports and research on these topics. I am personally now involved in research (helping my Neurologist) via a patient scheme as a volunteer researcher and also involved as a professional in statistics.

I would really like to know what those figures were based upon as I can call upon a totally differing set of figures. As others on here have said any disease / Illness can be blamed or implicated in someone's demise. You only have to look at the furore surrounding the deaths of those who supposedly succumbed to swine flu or to Asian flu or to the not so recent outbreak of legionnaire's disease, need I go on? They proved in the aftermath, after sending the public into a uber-panic that it was in fact other serious underlying medical causes coupled with the swine flu that caused these patients to die, not the swine flu itself on its own.

This applies to Parkinson's disease and anything else you care to mention. I personally know of three people who have lived, one who is still alive at 85 until their late 80's early 90's with Parkinsons for over 30 years without dying of it or through it, or any earlier because of it. I have heard of and read of many, many more.

We really need to keep a level playing field here and try to approach these topics with a modicum of sense and thought for those who are frightened and less informed.BUT that is NOT to say we should NOT discuss such topics, but more that we need to handle things more carefully.

As society ages, (we all are supposedly living longer) more and more people will suffer from diseases such as Parkinsons, fact. There will be new medications, far superior to those we have now, and even as we speak there are new super efficient ones being talked about as being not far away..........

So let's have some positive vibes for a change.........

But let's also thank those who do have the guts to tell us and advise us of the not so good things out there, because if they didn't we would soon moan.

Interestingly enough my Neurologist said many PD sufferers went on to out live their healthy counterparts.
Take care all

Regards

Mike T.