a neuro sees u for 10mins and u can never get out wot u relly need to say cus u get all flustered ,so when they say to u i will see u in 6 months time ,and off u go out the door,head in a spin ,not said wot u relly need to sort out ,lots more to ask ,i really think meds and things should be looked at more carefully ,every 3 months i rekin ,or is this just me
All your latest postings are right in the zone where i am at the moment.I have got a list of questions to ask my Neurologist when i go next month.Probably go blank when i get there like you,it must be anxiety.It's been a long 5 months since being diagnosed and was that surprised at the time i don't think i asked anything,just sat there listening.I definitley think the appointments should be 3 months as you suggest.Things can change or worsen quite fast,especially concerning medication.I am counting down the days to my appointment and have no pd nurse to fall back on.
All the best
I write things down before I go to see the neuro, or should I say type it out on pc and then print it off because I can't read my own writing
I often just pass him my notes and we work through them.
I'm quite fortunate, my neuro is very easy to talk to and he makes me feel at ease straight away. He also doesnt make you feel like he wants to get you out the door because the next patient is waiting. I also see my neuro more often than every 6 months if necessary. I realize from chatting with others this isnt common practice. I suppose it depends how busy your neuro is and how big his/her patient list is.
John's neuro sees him as often as he feels he needs seeing. John was seeing him four monthly after adding Madopar to his drug mix. Last time we saw him he was pleased with the way things were going and said,"I am promoting you to six monthly visits, but if you need anything before that contact my secretary." My estimation of him went up as previously I had thought of him as a cold unfeeling fish.
I find my neuro really hard to talk to. It's not that he's not a clever chap, it's just that he is so matter of fact and lacks the time to talk. I took a list of questions with me last time and went through them despite his pained expression. I am just thankful I saw a PD nurse. I took the same questions but she found the time to discuss each one with me, add information and provide anecdotal comment. Thank goodness for her. I just felt so much better by feeling in control of things.
I see my neuro every 6 mnths and that's about it....I see him...blink and you'll miss it. I took a list of questions once. He was deffo annoyed and told me it was the PD nurse's job.... only sad thing is there is no PD nurse.
I havn't seen the neuro for two years!! However, I do see the PD nurse every six months or more often if I have changed meds or feel I need to. When I was going through the diagnosis seven years ago I went privately and surprise surprise, the neoro had plenty of time for me. Once PD was confirmed he suggested I save money and see him on the NHS. Different storey - the firt time not only did I have to wait over an hour to see him but he also took a private call on his mobile during my consultation! The PD nurse more than makes up for it, not only is she very, very knowledgeable on PD but never makes me feel rushed and takes time to answer my questions. She is also on the end of the phone if I have any problems between appointments. I have no doubt the neuro is overseeing everything, and the nurse would get me to see him if she felt it was necessary, but quite frankly I am quite happy not seeing him.
hello everybody, I have'nt posted for some time but I found it interesting reading this thread because most of you seem to see your neuro about six monthly. I only see mine every 12 months and to be honest I usually get a letter putting it back even further. I'm due to see him in July but that will be 15 months since I last saw him. Thats if he doesnt put it back again!! I dont have a pd nurse so feel that actually no body is interested. Its been like this for the past 9 years so I really cant see much changing in the future. When I do manage to see him I'm in and out in the blink of an eye. It certainly seems different for some others I wonder if it a sort of postcode lottery thing.
Its very much up to the local Primary Health Trust whether they value the services of a PD nurse or not. In our area Parkinsons UK financed a PD nurse for two years and then the Trust took over which I believe is a Parkinsons UK strategy. This as I was left to guess when I was dx allows the neuro to pass all responsibility for communicating with you to the PD Nurse which is fine if he remembers to give you the contact details. Ours has been promoted so now tries to do in two days what he was pushed to do in five as well as cover for the PD nurse in the other half of the county who departed before Xmas. We have just received a questionnaire inviting us to tick boxes about the Parkinsons Service(!). My first reaction was deep suspicion that if they get favourable reponses - and the way it was worded they might because the PD Nurse is very well though of - they might decide that the two day staus quo is OK. Time will tell.
PD UK is fighting a campaign to enable everyone to have access to a PD Nurse in the way that I believe most people with diabetes and ms have access to a specialist nurse.
yes ihave dibeties and i have a nurse for it i go to the clinic every 2 weeks and be checked out at the mo cus im finding it hard to get it under control me self ,so ive not long had dibeties,got a nurse had pd 6half years and not got one ,something not quite rite there is there
I have got my Neurologist to accept an agenda for my consultations - in fact I see on a less regular basis, a Neurologist in Cambridge and he is very happy to have my agenda sent to him in advance.
I find that with the agenda you can get through everything you want to cover without getting side tracked or flustered
Hope this is of some help