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 onei live in shropshire

Hi Ali,

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

Natasha

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.

Worrals

Hi Worrels
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?