A crucial aspect of my treatment for Parkinson’s disease has been a medical professional (whether my Consultant, Parkinson’s Nurse, Occupational therapist, Physiotherapist or GP) sitting down and taking the time to listen to me and help me explore my disease.
You have been lucky so far. I have not ever seen an OT or Physio regards my PD. My neuro appointment is in January, 10 months since my last appointment!.
The parkinson's nurse I've met only once and that was at my instigation and I got the feeling that she didn't really understand why I felt the need to say hello!. She is available through e-mails but I often have to wait days before I get a response.
I very much feel that I am on my own with this and would love to see my neuro more often as I feel reassured after I see him. That feeling doesn't last long though and there is almost a year to wait for the next reassurance.
There needs to be more professional networks for people with long term, progressive conditions. I would just love to be able to pop in and ask a question quickly rather than having to wait and worry for months for a quick 10 minute appointment (If I am lucky).
I agree with you Caroline , i to feel that i have been left to get on with things and deal with things myself , i was given a PD diagnosis in August was supposed to be seeing the Parkinson's nurse but when i phoned up to check on my referral i was told the nurse was off work till mid October and when she comes back she has a 6 month waiting list so does not look like i will get a appointment this year, i do have a appointment with my consultant buts that's not till mid November
I take Azilect they provide some relief but wear off on a evening so i struggle to move on at night which is having a effect on my sleep i cannot get comfortable in bed to get a decent nights sleep if i had access to the PD nurse she could i understand alter my medication but i have to wait till mid November till my Neuro appointment , the consultant gave me a book about PD when he diagnosed it and it feels like it has been a case of now go get on with it , no OT, no Physio absolutely nothing so yes i understand what you are saying Caroline
Hi I agree totally. I feel there is no support at all. I have been to London for physio (i live in Derbyshire) and paid myself. When i asked about Stem Cells it was a negative answer. America seems far more advanced, why can't we have the same medical treatment? All I get from my PD nurse is another drug! I have a young family, divorced and need to work. At the moment i feel so alone. What can we do??