how many people have a pd nurse,and which area do you live?county? have you had a pd nurse the hole time you have been dx,or just recived one?is your pd nurse,male or female?and how do you feel about it
when i was dx 11 years ago i was givern a pd nurse,ihad her up till bout couple year back and then she left to further her carer,then never had one for bout a year.now got a male one
i live in shropshire
The contact we have to a PD nurse is through the phone (parkinson UK and Hospital)
They will call you back to answer your questions ; I have never come face to face with one even when my husband was in hospital due to falling badly and the nurse was in this same hospital: she was not available and I could have done with her help as my husband was very distressed and no one on the ward helped in any way.
I feel too that in an ideal world we should have wards for PD patients as I found the "normal" ward staff do not have a clue about this condition and its difficulties ; same thing with dementia, they are not in the least trained for this. It is rather worrying.
But I must admit, it is reassuring to have advice even if it is over the phone and later than your initial call. Anything is better than nothing and those people at least understand the problems and offer advice which is precious when you do not know what to do!too, they are properly trained.
Every PD patients?carer should have access to one, I think, particularly when the
app. with the neuro are always spaced over months.
I regret too that "admiral" nurses for Dementia are only in Westminster not anywhere else in London.
What other people think on the Forum?
We live in London.
Have a good week-end
I live in Dorset and was dx a year ago i have a PD nurse and have had her since then. I can phone her anytime and if she is not there she willphone me back as soon as she gets my message.She has been very helpful in putting me in contact wiith the link centre where i have seen the OTs and Physio.I have arranged to see her every 4 months.I am 65 and still doing part time work at moment tho after a fall on new years day i have been off for 3 weeks
Take care every one Chris
Hi Ali have had PD nurse since dx 4 yrs ago speak regularly on phone and they see me fairly regularly, did an initial home visit after dx to help with the disbelief and shock after, and see them inbetween seeing neuro. Seeing on monday for meds review at local clinic two of them Debbie and Sarah both good supported me earlier in 2011 when I was ill - feel very lucky to have them - they are also there as an ear to O/H if she worried about anything. Big fan of service should be available to all saves so much consultant time.
My pd nurse in Leicestershire is quite good. She is easily contactable by phone. I see her and the neuro every 6 months alternately.
you are lucky to have a parkinsons nurse . My husband has been diagnosed 5 yrs
The Gp told him he thought he had Parkinsons I will refer you to a Parkinsons consultant . We left the surgery not knowing anything about it and had to wait 8 weeks . The consultant gave him sinemet still didnt tell us anything . It was only as I was waiting that I browsed through the leaflets and came across Parkinsons UK that I learned anything
We have never had a Nurse . How great that would have been to have sonmeone come to your home and go through things with you . It would have been an enormous help to both of us ..
Even so we are getting through it together with the help of the internet ..
Evening everyone.... (well, actually it's early morning - one of those nights we all get... but we've got each other!)..
I'm coming up to first anniversary of diagnosis (although on reflection know things weren't right prior to that)... but have been fortunate enough to have Parkinson's Nurse from the beginning. My "regime" seems to be see Consultant every 6 months and see PD Nurse on intervening 6 months...(but has drifted a bit - guess they must be very busy)... She is also available on e-mail or mobile - leave a message and she gets back within 2-3 days.. BUT the Parkinson's Helpline Team do exactly the same
e-mail or phone thing, and they are brilliant..
My problem? I guess it's all still a bit raw and I panic!.. what's this? why do I feel like that?.. expect you know the feeling - but Helpline Nurses (as does my PD Nurse) just explain it all simply and logically, usually are able to tell me it's normal (what's normal with PD!?).. advise if necessary and importantly reassure and encourage... If you haven't got access to a PD Nurse NEVER feel shy or afraid to contact Helpline - honestly, they are real, human and, "as it says on the tin"
a real Helpline..(equally, for any new folk, the help, reassurance and care shown by one another on the Forum is a lifeline)..
Warmest wishes to everyone... and a wish for a good day tomorrow.. bursardavid.
Hi Ali J
Until recently we lived on the Isle of Wight where they have a very good PD nurse and deputy. PD nurse came to visit at home soon after my husband was diagnosed and has always been available for advice on the phone and would do home visits if necessary. She also ran a drop in clinic at the monthly coffee mornings held by the local Parkinsons Support Group and had started a regular clinic (by appointment) at our local surgery. I'm not sure but think she had clinics at other surgeries. She was always very accessible, helpful and supportive. She was the prime mover in getting a local Carers' Forum started so carers of PWP could meet and discuss problems and offer mutual support. Also recently organised a fund raising event. All in all completely committed to helping and supporting PWP and their nearest and dearest.
We now live in Worcestershire and have been here for two months. We haven't yet seen a PD nurse(or consultant)yet. Appointment with consultant is on 3 February and PD nurses clinic on 23 February so I don't know what the service is like here.
All the best to you Ali J - love your posts.
I met you at the local branch meeting. We live in the same village.
I have seen our local pd nurse she was very good and approachable.
She organised speech therapy for me and I got a cancellation so I Have already been.
I am only having minor problems with speech but she said it is best to get help early to prevent problems.
I have a slight problem in that my Parkinson's nurse and my consultant do not really agree with each other and so I get conflicting advice. The nurse is forever suggesting new meds and explaining what they all do; but the consultant says that as long as I am doing/feeling OK, then better not to add more meds until absolutely necessary. My friends say why would you not try new meds if they are going to make you feel better? - because we are living now and not in the future. What is the answer?
tasmin your the only one who nows how u feel,is it correct the neuro to say ur feelin fine,have you told him that.cus ur pd nurse seems to got either her wires crossed or she is tryin to help you.tasmin HOW DO YOU FEEL
You are one wise person, ali j! And so right in what you say here. I find it very difficult to stop and think 'How do I feel' when everyone around me seems to be discussing the meds etc and I might as well not be there at all!
I think (and this is the first time I've tried saying this, so forgive me if I cry) that I feel most of the time quite unwell, but not in a way I can describe accurately. Just not well. My days are quite up and down because of the meds. So occasionally (like in a class of children) I feel fine, because I have forgotten about the constant subject of Mr P going on in my head. But as soon as I remember again, I am struggling. I am very susceptible to what people say to me as well, if they say 'You look great', I feel it. If they say 'You look tired', I take to my bed! Most of all, I am incredibly lonely in myself, and fearful all the time, especially when I wonder about the future. Thank you Ali, for making me able to say that.
I last saw my Neuro in November and said that I was happy to stay on the dose I was prescribed when I was first diagnosed nearly two years ago. However, in the last 6 weeks or so, I have noticed a gradual worsening of my symptoms and – because my next Neuro appointment won’t be until June – I decided last week to contact my local PD nurse (who I met only once about 18 months ago) for some advice. The leaflet I was given states that the nurse will be available on Tuesdays, Wednesdays and Thursdays between 9.30 and 11.30 am.
I rang on Wednesday 1st February and the phone went straight to the following message:
Hello, you are through to the office of the Parkinson’s Disease Nurse Specialist. Sorry we are not available to take your call at present; we will next be in the office to take telephone calls on Thursday 2nd February between 9.30 and 11.30 am. Therefore, if your call is of an urgent nature, please contact your GP. If not, please call again on the 2nd February between 9.30 and 11.30 am …
I rang again at 9.30 am the following day and received the engaged tone. I dialled 5 for Ringback but the message said: The ringback service is not available for this call. I rang many more times within the two hours but, each time, the phone was engaged. At 11.30 am prompt, the original message telling me to ring between 9.30 and 11.30 am on the 2nd February was re-instated. This same message is still, coming up to Tuesday 7th February, telling me to ring on Thursday 2nd February.
I subsequently rang the Parkinson’s UK Helpline and received an answer straight away saying that a nurse would call me and one did, tonight. She was very understanding and said that I would almost certainly be needing an increase in medication after nearly two years. She advised me to ask my GP to refer me to the local nurse. I intend to take her advice, but my call will not be of an urgent nature and it seems a rather circuitous route which is hardly likely to foster a spontaneous nurse/patient relationship.
Has anyone else experienced anything similar to this?
Oh yes Lily, I am constantly being advised to contact my (non-existant) pd nurse specialist. Apparently one has been appointed, but it will take 3 (or was it 5?) years to train her.
Perfect! So all you've got to do now is tread water for 5 years.
Then the new nurse will have finished training and got transferred to somewhere about 400 miles away.
tasmin ,i can relate so much to wot ur sayin to me,and im very sorry.i am havein councillin tasmin agin ,i find when im low or anything i tell me gp ,i open up,and he steps in fast before i go back down hill to a break down agin,now im not sayin ur havina break down ,please dont think that,wot im sayin is,u have opened up and sid how you feel ,now its time to tell some one who can help you,like your gp,ihave a really good gp tasmin,how are you with urs? do you think can work for you,tell them how u feel,and let them help you,theres no shame in it,in fact people would think you stronger for facin up to things that u need some help.pd causes all sorts of emoutions tasmin like im sure your aware of,and i feel personally this is wot is happinin to you.please ask for help,some one to talk to.even if its a really good freind tasmin,someone u can trust,and open ur heart up and let it all out,it really does help belive me.now ino u most prob aware by now by readin the forum i have probs of my own goin on tasmin,but im no fruit loop,i feel things,i no wot ur expercinin,if needs be pm me,i dont mind if u wonna chat to me,im a rabberter,but im a good listerner as well.
I take it all back – for now at least. After several attempts, I finally managed to get through to the nurse this morning and she sounded understanding and knowledgeable. The first thing she asked was if I was experiencing any side effects. When I said no, she suggested that I should simply increase to the next dose of Mirapexin Prolonged Release without adding anything else as my current dose of 1.05 mg is quite low. She said she would contact my Neuro for confirmation and get back to me, although it could take up to a week. She sounded pretty confident that I would feel better on the increased dose.
I do hope so, as I am feeling quite **** at the moment.
lily ,ihope they work for you ,please let us no xx
Hi ali j, thank you so much for your post, I acted on it straightaway, because my GP is someone I get along with very well, but have never confided the deepest feelings and anxieties to him until now. So I went, he was brilliant, and am now referred to a counsellor. How quick was that?! He took time over me, did not rush, asked about each and every med. I have to have 3-monthly injections for dystonia in my eyelids (not pleasant!) and he suggested I ask the consultant for some in my dystonic left foot (which I understand is part of the Parkinsons). So we tried that yesterday, and what will be will be... (well, either I'll just fall over, or I'll walk better!).
All from the GP! Take heed of what Ali says everyone, it is so vital.
Thank you Ali - I will.