'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.
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.
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.
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.
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.
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
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