Hi my mum was diagnosed with Parkinson’s a few years ago and it’s heartbreaking seeing her deteriorate. My issue is getting her a Parkinson’s nurse. She has only had telephone appointments with the neurologist who is not very sympathetic or helpful. So she has not seen anyone in person for over a year. Has anyone else had this issue with getting a referral for a Parkinson’s nurse?
A warm welcome to the Parkinson’s UK forum.
My thoughts go out to you and your mum, it can’t be easy watching a loved one’s health deteriorate. Sadly, Covid-19 has put a strain on the NHS which has resulted in delayed appointments with health professionals across the board, including Parkinson’s related conditions.
However, we have an amazing team of advisers via our helpline team that can arrange for a parkison’s nurse to get in touch with you. They’d love to help you further on this so please give us a call on 0808 800 0303 or email us at [email protected].
I could write a book about the lack of help us poor sufferers experience, but I am currently changing my diet to combat a problem with dairy that my surgery seem to regard as not important. I see all the news about cancer and whilst this is a killer, sufferers usually get a remission, unfortunately there is no remission for Parkinson’s.
The general public should be made aware of the terrible stress we sufferers (mine is ten years) go through, even writing this email is a horrific experience with my tremor. I have decided when I have had enough, which is near, that I will end my life.
I have enjoyed my life until Parkinson’s reared it’s ugly head, best of luck to you all and don’t give in.
The number given to you above is a huge help. We have 2 PD nurses both of whom we have seen in the last 6 months and our neurologist also. One is a specialist DBS nurse and the other a PD nurse through our neurologist. I phoned the PD Uk helpline a year ago and they were amazing. I don’t mind if you send me a private message. My husband has had PD nearly 29 years.
I’m really concerned by your message and I’m truly sorry you feel this way.
I will be sending you a private message shortly with information on the help that is available to you.