Newly diagnosed and a concept called 48...

'Its Parkinson's' he said, I was relieved, better to know your enemy so you can form your attack. I thanked him, he looked surprised, I was calm, smiling and told him it was OK. Outside in the Hospital car park an autumn chill suddenly cut me, I wasn't brave anymore and I sobbed.

All of us can tell a story, all of us remember the day our Consultants came clean and we knew finally that the odd, quirky previously unexplained happenings now had a seriousness that belied their individual impact.

The next part of my story is what troubles me, I got home and went on the internet, I accessed PUK site and the first image I saw was from a feature they had been running for a few weeks on DBS. It was shocking to see, and I felt sick. Since that day nearly 7 years ago I have never googled PD nor been on any PD site and read any information, patient posts & blogs aside. fact. I have been wanting for many years to launch '48' a service that handles patients in the first 48 hours of a diagnosis. A service the Consultant recommends as the first port of call. A service designed to be gentle but strong that guides the newly diagnosed through some first basic steps. A service I would have welcomed and used. How you are shaped in those first hours of realization I believe impacts greatly on your forward journey. Its a service I hope one day exists.

[carolineb211]

I absolutely agree,

I was advised to find out as much as possible about PD when I was diagnosed. went on the internet and it was full of doom and gloom and I was so scared. I then discovered the forums and they were a god send. Honest information and supportive people, made all the difference.

Caroline

[pkell]

When I was diagnosed I was desperate to know how long before.....mostly how long before I would die. I searched for months trying to find, not just a single answer, but some parameters. There was nothing. I'm almost glad now, had I known how bad I should be by now, I may not have been as good as I am (???). Something must have been lost in translation.

Good luck with 48, it sounds like a wonderful idea.

PK

[Lindylanka]

Had the same advice myself, and could have done with a friendly voice to actually tell me more. I clicked onto a site that told you on the same page about Parkinsons plus disorders, and got very anxious, especially as I had been told I was 'somewhat atypical'.

48 sounds a very good idea.

The forums were a life saver and prevented me from feeling alone and scared, and made me realise how varied we are. I have met some fantastic people with PD many of whom are dealing with much worse with courage and a great deal of commitment to helping others.

Lindy

[BunnyTheOctopus]

HI

When you are diagnosed with Parkinson's you may react in different ways

1.. You are relived, because now you know what is wrong

2.. You are relived because now you can stop working

3 ..You don't believe iit and don't find out about iit

4... You are terrified because you know what it is

5... You are terrified because you don't know what it is

However, even if you don't want to find out straight after diagnosis, you probably will after,(this is my observation) two years

[borderslass]

I hope your 48 comes about. I was someone who ploughed into every help group that was out there. Now I have backed off, PD had me!! I have now got back to my being me. I wish you every success with the project. I tried, through a PD group to become a befriender for people newly diagnosed but got no where.

[newdidit]

I have to say that 48 sounds a great idea. Being a health professional who knew and knows more than enough about PD I still went through that panic mode of trying obatin as much info that I could as if I has never heard of it before....why?

I can't answer that I am afraid but even to this day, some 5 years down the line, I can be with a PD client in my professional capacity with no problems or association to myself but when it comes to treating myself I am absolutely useless and I feel a complete failure. Now that has as much to do with me being who I am but I feel I should know but I dont and I cant.

It has taken me up until today possibly, to realsie that I will probably feel like utter Cr** every morning and yes I am still wondering why and looking for the cause. It's not that I dont acknowledge or accept my diagnosis, well I dont think it is, its just that I still keep looking for the reasons why I feel the way I do.....tired, exhausted, unsteady, weepy, sleeping not sleeping, tremor, full on tremor, anxious, some paranoia and it goes on......my dear friend myself do you think it may be........yes did too much yesterday........had grandchildren after a week at work........yes have painted the living room....see any excuse