Dear All,
As some of you know, I have been diagnosed quite recently, in August (age 50). I am at the stage of reading everything and anything I can. However, the Michael J Fox book has somehow filled me with a ghastly, creeping fear and foreboding, although my son bought it for me obviously expecting a different result. Has anyone else read this and had a similar reaction? I'm not sure why I feel like this either.
What other books have people found useful or to be avoided?

Hi Tamsin

I thought lucky man was very good, very honest, and well worth the read. You are probably reading it too soon. Try Rasheda ali's book I'll hold your hand so you don't fall.
You don't have to read anything.
My thing is this

YOU do what YOU want to do.
When YOU want to do it.

TAKE EACH DAY AS IT COMES.
be a mars bar advert
WORK, REST AND PLAY

Tina x

I've just brought PD for Dummies.Not started it yet.I have been reluctant to read,scared of future,but think its best to understand it a bit.
Take care Dot xxx

Hello Tamsin - sorry that book wasnt for you. Its not easy to read about someone like Michael J Fox, who is obviously in the advanced stages of PD. The "Parkinson's for Dummies" book is probably a better one for you at this time as it is easy to understand and it suggests an attitude of "prepare rather than project" ie prepare for what may happen but dont project ahead to what may never happen, as PD is different for everyone. Best wishes Sue xx

Another good one is Parkinson's at your fingertips. which is a dip in and read what bits interest you.

We are all different, the only thing we have is the word Parkinson's. How it affects each of us is so very very different.

whatever happens Tamsin you are not alone..

take care
tina x

Thank you for your very wise replies. You have made me feel so much better! I completely understand the thing about reading something 'at the right time' - I watched the PD Society's DVD too soon as well.
Interestingly, the fact that PD is so very different in every person is both an uplifting and optimistic thought, but at the same time it can be quite isolating, because you may never meet someone who has exactly the same symptoms. That is why thie Forum is so fantastic - none of us are alone, and I feel the support as if you are in the room with me. You are people who understand exactly, where my family and friends cannot go, for all those reasons.

hi,

have you read tom isaacs book, brilliant read. i couldn't put the book down once i started.
shake well before use is the title.

goldi..

I had similar with friend's when John was first diagnosed.They think they are saying the right thing but in fact it is exactly what you do not want to hear.I found Parkinson's for Dummies very helpful as well.

Dear Tasmin,
Last month I was with Michael J.Fox and he
was in good spirits at the foundation's
roundtable on research here in NYC.
I photographed him , other than a little tired
after 4 hours of researchers talking and a big
party for the PD foundation the night before at a disco
he was really fine.
PD is so unique to everyone so please don't use
another's description of their issues to scare you.

I know a woman who has PD for 20+ years that does quite
well for herself and she is advanced in age 83 years!

My wife after 10 years diagnose still lives her life
around PD (not because of it) She drives a car ,keeps her
work going etc.

It's bit normal to be scared for yourself & for all who love you.

One young Neurologist MD PD specialist at our hospital
calls Parkinson's, a syndrome not a clear cut disease
and quite possibly having many factors other than the
traditional thinking of just looking at the dopamine
problems.

Good diet and exercise are most important.

Good Luck,

Michael (USA)

Like others I read everything I could find and still was until a few days ago. Despite what i 'knew' in my head I have remained unusually positive and self delusional. However I happened to tune in to an Horizon (?) programme about progressive disease and euthanasia. It was introduced by a woman with PD. It was a perfectly predictable sensible programme and said nothing I didn't know but the fact the presenter had PD (like ME God forbid!) made me very depressed because here she was talking about killing herself.

I don't think one can predict what will upset you.

Just as I was reading this thread someone on the radio read W.B.Yeats Poem "He Wishes For the Cloths of Heaven". It's a particular favourite of mine and for some reason I correlated the two subjects (PD and the poem) and it made me shed a tear and feel a bit sorry for myself. I think it was because I felt for a moment that it is now pointless to have dreams. There's no predicting what makes on suddenly feel life is scarey or unfair.

I read Tom Isaacs book and felt slightly irked that with my distonia i couldn't walk round the block let alone round Britain but now I am taking tablets the prospect would still be difficult in the extreme but not impossible. There is always something hopeful round the corner at the moment and I still feel one needs to be informed in order to maintain even a small amount of control. However I now feel knowing the workings of every synapse and vitamin is not necessarily essential in order to try to improve ones lot. One really needs medics one can trust - they need to know that.

I don't want to make anyone sad but go read the poem if you want to have a moments poignant reflection about whatever your head conjures up.

As we are a curious people I doubt we can stop increasing our knowledge about PD but a little bit of self pity and fear is a necessity I think not a self indulgence.

Tomorrow I will feel more optimistic and fine. I guarantee it.