Hi,
I have posted a couple of replies on here, but I am very new to this.
I am quite surprised by the things I have read. Similarities abound. This places me in a sort of comfort zone. I think knowing I am not alone is very important.
I was finally diagnosed two months ago. The condition has existed for quite a few years I think. It finally became obvious later on, after exhaustive tests for other things. The reason for it taking so long to reach the final analysis had two main causes.
1. No definitive test for PD.
2. It was masked by many other problems.
My work was hard and demanding for many years, so I wrecked my body. Hence the many false starts.
I have searched the net for a replacement body (something around 21 years old should do), but as yet have been unsuccessful.
Since joining 'the club' officially, I have been amazed by the kindness and support of professionals and many others.
On the final day of reckoning I half knew my fate because my Father had suffered PD and by this time my shaking was more pronounced. I still hoped for another diagnosis of course, as all us optimists do.
As the words were uttered I took it on the chin. I was doing fine till a nurse spoke to me on the way out and I had to reply. I choked as I tried to speak.
Do I feel ashamed?
No.
Read what Billy Connolly said.....quote..........'it's + + + + + + + scary'. And it is. Anyone saying different is covering up. It may not be terminal, but it's a nasty little blighter with many side effects.
As time has passed by though, I have tried to reassess my situation. I may have seen what it can do first hand, but I am now supported in so many ways I draw strength from that.
Learning to adjust is hard and not being fully independant is not easy after so many years of doing for others. I am working hard on that aspect with my wife, bless her, she is a great help. No mollycoddling, just helping me where necessary and not allowing me to become complacent. I do run out of steam a lot though.
In the middle of all this I was also dignosed as 'probably' having Prostate cancer. Blood tests seem to indicate this. It is 'probably' going to be confirmed next month when I go for my biopsy results. I am prepared for this. I think what has been said so far was designed to help soften the blow, but it is not yet fully confirmed. The count should be 5 or below. Mine is 10. It would seem almost inevitable.
Add to this half my left hand is missing and has been since 5 years old. I sweat to the degree my blood goes out of balance and I dehydrate. My muscles are badly damaged in my back and good arm from RSI, working one handed all my life. I have suffered internal bleeds for the past 3 years if I strain when walking to far and you would probably say I am likely to be depressed.
Far from it. I can cope because of the help I am getting from my doctor, my consultants, my specialist nurse and Age Concern.
The only people who are not behaving ethically or with any compassion are the DWP, who have lost all sense of rationality while tyring to stop scroungers getting incapacity benefits.
They placed me in the Employment and Support Allowance section to help me get back to work, instead of the Support group. Their witch hunt coincided with all my hospital appointments.
I am all in favour of those who make false claims being rejected, but come on.....I have two consultants who will vouch for me as well as my doctor and many other professionals. They have been well informed of all this. I did not need the distraction at this time.
It took 3 visits to get their doctor there to assess me. The first couple of times I was there, but he was not. As walking is painful this was not appreciated.
I was first assessed by DWP about 7 years ago, they agreed I was not fit then. Chiropractors, doctors and specialists all told me to stop work. I worked on well after they advised me to stop, much to my detrement.
At 63 and a half with the above conditions I am sure there must be a que a mile long wanting my services. It makes me wonder why I paid National Insurance all those years, which is on a sliding scale according to earnings......and I worked a lot of overtime, so I paid a lot extra.
After nearly killing myself on several occasions, not to mention crippling myself, I find this hard to swallow. I am of course contesting their decision, but not holding my breath.
So with the help of so many I am coping. The DWP are no longer fit for purpose so I shall consign them to the dustbin of my mind, while I come to terms with all the rest.
Always pleased to hear from others if you care to comment or share advice.