Newly Diagnosed


#1

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!!!!!


#2
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.

#3

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


#4

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!).

 


#5

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?.


#6

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

 

 


#7

very well said


#8

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

 

 

 


#9

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.


#10

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. 


#11

do you want to take the blue pill or the red pill take the blue pill and you get to stay in wonderland and stay ignorant ,take the red pill and you get to see the truth ,maximus the matrix

 


#12

Hi Shakey,

Yes we had a good family bonfire thank you. It has become something of a tradition over the years. Might be time to give it a miss next year though. The youngest grandchildren aren't very interested (I think Halloween is more their thing these days - I'm not very keen on it myself). The older ones will soon have other things to do and I'm shattered after this one.Ridiculous really but there you go. More adjustments needed.

Does your family do much for bonfire night? D 

 


#13

Hi Daffy, we normally have a family (on my wifes side) bonfire nite, but her mom passed and they didn't think it appropriate, so me and Dawn went down the club and had a few sherberts.A welcome relief after Stoptober for me. 3 pints and I was anybody's!. How you getting on with this PD?

 

Shakey


#14

Hi Shakey

PD quite variable at the moment. Leaves me really tired after a busy day, so I'll only write rubbish if I try now. I'll catch up and post again in a day or so. How are you doing? D


#15

Shakey boy , in my neck of the woods we would say 3 pints and I'm everybody's, thank goodness I limit myself to 2 pints of Farmers Blond.  


#16

Beer is always good as it raises uric acid levels. Have you also tried Mannitol - a diabetic sugar which has been known to help parkies. 


#17

Hi AJ,

Uric acid causes painful joints, gout ? however see your point about being a antioxidant but prefer to eat foods with a high level of antioxidants.  I read that the notion pd people have lower levels of uric acid but this remains inconclusive.  Inconclusive may be interpreted in two ways ,  uric acid is not low in all people with pd or there   has not been sufficient research to evidence this theory either way.

Unless you can get a uric acid test that says you have a low level I would not personally seek to raise that level as it is a fact evidence based that high levels of uric acid are bad for you as stated earlier. 


#18

I think anecdotal evidence is fine but only  reliant on a oersons viewpoint and experience.  With  Mannitol I can find no research undertaken on  more scientific based research?  I have not looked at possible counter indications or possible negative outcomes on health as a consequence of consuming an artificial sugar?

 

Have you any more information AJ, of course with PD we have the right to try these ideas but please be careful and discuss any changes in diet or  using supplements with your doctor.  One mans poison etc..

Sorry if appear negative, but  only a personal view..  Take Care,,am still drinking the beer though!,,

 


#19

Hi Shakey

How are you doing. Hope you are as well as can be. I've just noticed that mornings seem to be fairly ok for me but by mid afternoon some wobbles set in and I become more aware of my symptoms. So I try to get important/essential  things done in the morning; then there's less pressure later in the day.

Interesting post about the benefits of beer.I do seem more partial to a beer than a glass of wine myself these days, especially hoppy ones.

D


#20

Shakespeare,

Alas poor uric !  I knew him, Horatio, a fellow of infinite jest......

 

Hamlet   a cigar and a pint.