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Newly Diagnosed

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Shakeyboy
Newly Diagnosed

Hi. I was diagnosed on 20th Jan 2017. Came as a bit of a shock but half expected. Just would like to share others accounts of how you feel and how you are coming to terms with it. It's all new to me!!!!!

DivineR

Welcome.

I'm sure you're in shock phase at the moment. Give yourself time to let it sink in.

If you're still quite mobile, plenty of stretching to keep the muscles supple. Plenty of water.

There is more info on the different threads. Take what relates to you as you'll find everyone has different symptoms at different times. I was diagnosed in may last year and still finding my feet. Take your time.

Shakeyboy

Many thanks DivineR. Will do the exercises and drink plenty of the clear stuff. Thanks agn for yr reply. Good Luck.

OxfordGills

Hello Shakeyboy

I have lived with PD for 14 years having been diagnosed in my early 40s.  Life has been challenging, but I am still very able and on the outside I show no signs of the disease.  I have no tremor and no freezing.  My problem is muscle stiffness and leg/foot cramps which can be excrutiating.  I have developed my own way of dealing with these and now feel I am back in control.

PD will try to take over your life with its varying symptoms - just when you think you are getting to grips with a new one, it will throw another at you.  This all goes to make life much more interesting.

A diagnosis of PD is enough to send the chills down anyones spine, but it is possible to lead a completely active life as long as you allow yourself time to wind down and de-stress.  Listen to your body and learn what your limits are, push them but dont take advantage.

Be bold - ask for help when you need it and refuse when you know you can do it yourself.  It may take you three times as long but the satisfaction of achieving your goal is worth the struggle.

Most of all, believe in yourself - you are still the same person, just with an addition to your cv.  PD doesnt have to mean the end of life as you used to know it - stand up and confront it and tell it who is boss (then curl up in the corner and take a rest!).

 

Shakeyboy

Many thanks OxfordGills, most reassuring. I am still a bit shell shocked about the whole situation but with comments like yours puts a good perspective on it.

As you say, another addition to the CV!. Do you go to any help groups or exercise groups?. If so do they help?.

DivineR
(No subject)
dazzabambro

hi shakeyboy  was diagnosed at 32,17 years ago and im fine,

the first shellshock will take you a while to get over but dont dispair  you need to as oxforgills says to destress and allways have a ,this thing isnt gona beat me attitude.

im not gonna lie to you as the meds are fine tuned to your  specific needs youl face some days where you might feel like giving up but once the meds are fine tuned there very very good

my own meds took 2 years to fine tune and i faced some very dark days indeed but you will get through these ive had it for 17 years i show very little sign of it i still drive,walk and do most of the thinigs i would do previously but without the meds im a wreck ha

 

one    thing i will say is check your finances ,mortgage ,loans life insurance get sound financial advice as many of them have a 120 day time limit on illness cover a fact i found out too late.

above all keep positive parkinsons has taken me places i would  never have been met some wonderfull people and changed so much 

so are you ready for the rollercoaster ????? ha be happy

 

 

dazzabambro

very well said

OxfordGills

I used to go to a Young Onset Group but I found it was a bit too regimented in the meeting times.  I was working at the time and was just too exhausted to go out again once I was home from work.

A local PD course was run at our local hospital two years ago and I made two extremely good friends whilst I was there.  We have kept in touch ever since and meet on a regular basis.

Having these two fellow PD friends has been an immense help and we have managed to support each other through the trials and tribulations that we have encountered.  I have found this close friendship to be more beneficial than the group setting, but I know that many people do like the group environment.

I am sure there would be a local group near to you, or alternatively look out for physio or general information courses.

Good Luck

 

 

 

Shakeyboy

Thanks Dazza. I am certainly getting ready for the rollercoaster ride. I am still awaiting my meds to be prescribed and discussed with my GP. I'll let you know how I get on.

abi1

Hi! My mum has had PD for approx 9 years. We recently read a book by Terry Rummins which gives great insight on handling the condition post diagnosis. What my mum found particularly helpful is that the author puts into words the 'up & down' nature of PD. This is a good book for carers/ family to read if they are struggling to understand how life is for the PD affected person.

The title is 'So I've got Parkinson's Disease.' Published by Matador. (2012)

Hope this info is useful. 

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