I’m new here. Was diagnosed at the weekend by an inhuman neurologist who didn’t exactly break it to me gently. He couldn’t wait to get me out of his office. No support offered, just told me that he’d see me again in 3 months. I’m devastated. My GP could only offer me a telephone consultation (she’d previously told me she thought it unlikely to have pd). I don’t know what to do. I live alone with no close family and am terrified about the future. Can someone help me please?
Hi Sara, welcome to our friendly forum community. I just wanted to greet you and to say that I’m incredibly sorry about your experience with your neurologist. It’s scary to get diagnosed and can be even scarier when you feel alone during this time, my heart goes out to you.
You can always call us at 0808 800 0303 for free and confidential one-on-one support. We also have a lot of very helpful information on our website at Parkinsons.org.uk including daily activities and research news.
Hi Sara you have made your first step on the ladder by posting on our forum sorry should have said welcome, I think most of us who find out that we have PD get told by the top person just as you have been told. When i came out of the doctors room it has not sunk in, but help for me was just out side the door, A very nice middle aged lady who had , had PD for quite a numberof year she was a member of Parkinson’s UK and on this table next to her was lots of their leaflets she advised me which i should read I did pick up one NO NO she said you don’t want to read that one (it was about advanced PD ) I will always be greatfull for the advice i had from her never got her name but if ever she reads this post then i say many thanks to her. So join a PD club make sure you are a member of Parkinson’s uk and share your thoughts on the forum good or bad We are all in the same boat. Don’t be silly Its not the Titanic but the QE 2 a peace full ship.
I feel for you as that is exactly what has happened to me, I was diagnosed about 6 months ago went to docs as i had a bent finger and hand shaking he sent me to the neurologist who checked me over told me i had Parkinson’s and most likely had it for years sent me away saying my doc and the pd nurse will see me and give me medication, which the pharmacy at my doctors rang me said i could collect meds heard nothing since so do feel for you as you must be totally confused, I have checked up on it through the NHS site and yes got lots of symptoms, I don’t know what to do either do we just sit back and except it, are you on meds yet they do help a bit don’t know what i was expecting from doc nurses but thought i would have heard something by know, I am 71 by the way but is still scary , if you no one close or who you could talk to keep posting on here check to see if there is a local group you can contact, funny world we live in these days good luck
I was lucky to have a face to face with my GP who did some tests and said that I had PD. they have referred mt to the Neurologist but I think that may take some time. It appears from reading on here that it’s very much a postcode lottery on treatment. Good luck with you PD journey.
Sara, I can relate to the delivery of the news - it is very common. It will take a while to sink in but my own experience has been okay. I was dx at age 55. I’m now 67 and still fully functional on medication. I was afraid that I wouldn’t be able enjoy being a Grandma but my only Grandson is 5 now and, so far, I can still play and care for him. I also care for my husband who is now disabled. For many, there is quality of life for many years following a diagnosis, especially if you are managed well. If you have access to a Movement Disorder Specialist clinic, I highly recommend it. Best to you, Iris