Realisation


#1

Hi everyone I have just joint the community as I've finally accepted that my condition is real and here to stay.

i was diagnosed in June 2013 at 41 years old and to be honest have not  even thought about it that seriously as work is fast paced and relentless I've just gone to the pharmacist and collected my order to pop down my neck with me porridge oats every month and thought no more of it.

the stiffness in my arm and trying to express deteriating delivery of the 10 letter plus words in the crowded training room   With the ever diminishing effectiveness of being able to write anymore covered up by the email.

my job have been supportive and changed my job role to suit my current condition and for that I thank them but as the pace have changed at work and I have had time to think the self realisation has reared it's ugly head  and my outlook has changed most days I am my usual upbeat happy self but now and again those depressive "my life is knackered" thoughts edge there way in and to be honest it scares me.

so thought I would give this forum a chance to see if I can talk to people with the same condition as quite frankly is it me or does everyone around you think it's something that will just clear up?

anyway my names steve how are ya?


#2

hi steve

welcome to the forum . i was diagnosed  sept 2014 at 56  but they think i had it for 8 years before , i just thought it was me getting old and carried on. i find work colleagues either say oh youre retiring then or after the initial helpfulness think you can do everything as usual . most of time im fine ,i have attitude of just get on with it , cant change diagnosis so have to find ways round but like you those thoughts of sh.. im knackered and what about future do creep in ! 

still upping meds so hopefully will still see improvement . need to work to pay for all the holidays i want to take !!!

 


#3

Hi Stevie and Kittens3

I was diagnosed in 2009 after suffering symptoms for at lease 3 years prior.  I am 53.  I am learning to listen to my body, when I feel good I am a well tuned car, turn the key and off I go wind in my hair and I can't see what all the fuss is about.  When I am in pain, stiff, and wobbly I rest and let others take the wheel. Most of the time I am convinced that the scientists will come up trumps and deliver us a cure, so I leave the future to them. However, like you what I call the 'black dog' comes to visit and I fret that I won't be able to be the support to my daughters that my mum was for me, and still is, when their children come along.  I have cold sweats in the middle of the night worrying that I will be senile and a burden to them.  That dastardly dog doesn't stay long though, and as I close the door on it, I know its my job to enjoy each day, laugh out loud at least once a day and cherish my family and friends.  A positive that has come out of being a PD sufferer is that I no longer prioritise work, cleaning the house and everything else before family and friends. 

This forum has helped me immensely as I can feel that I am not alone and if I need help someone is out there with experience and guidance and a sometimes a funny tale to tell, so that I can get that laugh out load moment in my day.


#4

 

Hi

 Donkeys Years ago i remember hearing on the news micheal j fox had parkinsons, the media made a big thing about it being so final for him, i thought how terrible and how young, young people don't get that i thought, i also never dreamt that i would be one of these people with PD.

in my late 20's i developed a tremor, but i had always ignored it at work and out, people would notice 'what is that??' they'd say, i had no idea what it was, but over the years it became more problematic it developed into so much more and i was unable and unsafe at work.

I suppose in our own minds there is a element of it'll clear up and just go away,at times its is certainly in mine, i still feel like me before i was ill or aware at times, although ability is lacking, i have the mind too do it, just the body isn't always willing, little steps are small victories.

a friend after a year of myself being unwell and not seeing me said ''what was it??", on first impressions too him through his eyes i was still the same me, so long as i didn't move and hid my tremor from his eyes. My aunt said ''it cant be PD it's not in the family he's not old enough", and my Gf's aunt said one xmas ''does he have a problem with the drink??" i had too laugh at that because she was drinking and i was not cool


#5

Hi everyone I feel better already finally people who understand is there social meets where everyone gets together or just charity events?


#6

hi 

i go along to local support group. i find it useful to chat with others in same situation . although im one of youngest there . doesnt bother me as all  v supportive even with work matters . some areas have young onset groups but theres not one near me 


#7

all the support groups are listed on this Website and some also have YPWP branches as well.

if you have any trouble PM me i will do what i can to help.

i was dx age 47 june 2013 at lincoln county.


#8

Hi Steve,

I was diagnosed at 26, but had symptoms from the age of 16.

i bit the bullet today and finally posted about myself.

I too have wandered about any support groups, when I was diagnosed I couldn't drive so couldn't get to any groups, which were the other side of Bristol.


#9

A good friend of mine belongs to Bristol branch are you able to get there now? BB


#10

Hi Betty, 

Ive had a look at the groups, there are 2 in bristol, one is near Southmead, i know how to get there, but dont know how to get to the other one...thing is i'm a pretty shy character, until i get to know people, one of my fears is walking in somewhere on my own, could be anywhere, pub, cinema, and even worse if I know no-one. The one in Southmead is on a Saturday...which one is your friend a member of

 

x


#11

big grinHi Betty thanks for your help I'm near Colchester so I'll search for the nearest group to me

hi blondie I thought I was diagnosed young but this is why I think forums and

suoport groups are great as you feel that you are not 

alone and you can always talk to anyone that

actually understands it's what I've needed.


#12

Hi Steve,

I have been meaning to do this for a while..being diagnosed so young was a major shock to me and I didnt want to believe it, didnt want to see or speak to anyone about it..I did however meet up with a lady in Bristol for a coffee, but I cant find her number or her email address anymore..

 


#13

HI Steve you are welcome xx


#14

Hi Blondie, I was very much like you, nervous of going alone but someone from the support group arranged to meet me outside for the first time, which really helped.  If you contact the group I'm sure they would do the same for you.

 


#15

Hi Bluebarb,

At least i'm not the only one to have felt this way...i will contact the group x


#16

Hi Stevie

My story sounds quite like yours - I too live near to Colchester and have just started looking into younger groups in the area - there is one in Bury St Edmunds which meets every third Friday, funnily I called them today but the organiser is away on holiday till next week so can't tell you what they do but hopefully this may be a good place to start.

 


#17

Hi Annie thanks for the info would appreciate if you could let me know the details when you find out I would like to go along 

thanks steve


#18

Steve,

Hope you find the group helpful, when you get the info as to where it is.

I'm thinking of going to the one in Bristol , near southmead hosp, this Saturday, it'll be my first meeting, got to find it first lol hope my sat nav doesn't let me down x


#19

Hi Stevie, ok will do, the organiser is away 'till next week so as soon as I know anything I'll let you know. I do know that they meet every 3rd Friday of the month at Risbygate Sports Club Westley Road, BSE and hold 'regular events and social activities'  so sounds good to me.


#20

Hi annie

many thanks for your help