How Often do You See The Specialist and for How Long ?
I see mine twice a year for about 20 minutes each time.
IS this typical ?
I see mine every six months. The visits are just over an hour but thats because I am taking part in a Tracking Parkinsons study.
Hi. I see mine every 6-9 months. For about 5-10 mins.
PS. I see the nurse between times, for about 15-20 mins.
At first it was every six months but now three years down the line it is once a year and I presume for the five or max.ten minutes it has been hitherto. However, when I was put on to the yearly appointment, he (the neuro) said I could telephone if I needed to and I have done so once for confirmation that I could up my medication for the duration of a strenuous walking holiday and he returned my call - I think the same day but anyway very quickly. There is also a PD nurse but to date he does not do regular reviews. I have contacted him once in the last two years and although I have to wait a couple of months, I have been given a generous amount of time.
My impression is that any longer than 5-10 minutes is unusual.
I haven't seen a specialist since diagnosis some 3 - 4 years ago. I found the really short appointments meant I actually felt worse after seeing him. I did all the usual things I found tips about on the forum - prepare questions in advance etc - and I can't deny his expertise and efficiency. I found though that it was moral support I really needed. Given that my progression has so far been pretty slow, I instead opted for regular chats with my Parkinsons Nurse, who offered appointments every 4 months for about 40 mins. She has been fantastic and I couldn't have asked for more. I can ring her any time - I haven't, but its good to know it's an option if I really need to speak to her. This has been combined with GP support - he says he has two patients aged below 60 with Parkinsons and knows less than me about it now - but again is just so supportive and a bit of a motivator. Between them my medication is sorted out and things sre good. Now about to see a specialist again - and my nurse has recommended me a local alternative. First appointment will be for an hour but after that I have been told it will be 30 mins each time at whatever intervals are needed. This has pretty much worked for me so far - I guess it won't have suited everyone - being able to choose makes me feel a bit more empowered to be honest. I am just so grateful the nurse funding is available where I live as she has been a godsend.
Same as Elle Mac:
Every 6-9mnths for 5-10 minutes...no Parkinson's nurse. I have used Parkinson's UK help line but miss a nurse.
i started seeing my specialist twice a year for about 5 minutes and odd ocasions 10 minutes now it seems to be every 9 months ive never herd of a parkinsons nurse at my hospital or seen one from what ive seen and read on hear it sounds well worth talking to parkinsons nurses iff you can get to see one