PD Nurse / back up

Hello everyone,

My OH was recently dx with PD. I have been reading, searching, continuously for any kind of help /advice. I notice lots of PWP have a PD Nurse, and from what I have read they are very good in times of need and advice with PD/ meds etc.
I have managed to get a contact number at the local hospital for PD nurse, but as my husband is seeing a private Neuro, will this mean the NHS won't allow him this service? he can't have a PD nurse in the area where he attends to see his Neuro, as it is miles away. I will contact them and see the response I get, just wondered if anyone knew how this works. Also do I ask to be seen? or do I just register in case I need them in the future? or do I just leave it until I may need the assistance of a PD nurse. My OH keeps saying what are you bothering with that for? I'm feeling better, what do I need a nurse for? I tried to explain that PD is very complex, and we could need back up at any time regarding anything, then I get why what are you expecting to happen? what are you hiding from me? I don't know how to tell him that PD is not just a walk in the park, without getting him all on edge, he panics about the least silliest of things imaginable, maybe this is to do with PD? just the other day i got a screw driver to tighten a screw that had started to loosen on a curtain pole, (one of the simple things he can no longer do)he went berserk!!!!! turned on me, got into a terrible state, and went across the road to fetch a neighbour to come and tighten the screw, I can't tell you what a horrific state he goes into over the tiniest things, shaking, walking up and down, basically he just goes off his head. Sorry to ramble on, any advice would be great, love hols x
I!m not sure how all PD nurses work but mine (recently resigned through excessive work load) did see me at the hospital and ran a clinic sharing notes and consulting with my specialist as necessary over my care. I dont know how they could or would work separately from the neuro but maybe some do. It would mean two people prescribing treatment separately as they dont work together and two sets of notes.
I know when i saw a general neuro at the same hospital i did not see the Parkinson Nurse. This changed when i saw a movement disorder neuro and attended the movement disorder clinic.
Hopefully others will be able to answer your question better.
hi holly

i have a brilliant consultant and his team but they are a 2 hour journey away but that was my choice as i had been to a talk that he had given near where i live and asked about a referal to see him he said i would need to contact my gp for this i was reffered 3 years ago and have never looked back, i should say that we do have a specialist in this area but he is not a neuro he is the consultant in geriatrics and i have not seen him for 7 years have been seen by the pd nurse who then left the post and we now have a new one who has just gone into post although i have appointments sent to see the specialist the hospital keep putting the appointments back to a later date but as i am under the consultant the newcastle team i am quite happy with that, they have a clinic run by the pd nurses and they do telephone consultaions so if i ring up and they are really busy they give me a time to ring me back they are brilliant, after saying all that my point is that all though you see a private neuro it should not affect your hubby seeing his local pd nurse i would ring and ask you have nothing to loose, sue.
Hi Holly just to say I see a Parkinson s specialist privately and was straight away given the contact details of the local Information and Support Worker and the Parkinson s nurse. If you have either or both in your area I would strongly recommend that you contact them for support and advice for both yourself and your husband.

Best wishes

Thanks all, I will make further enquiries regarding the PD nurse. Just to ask about the other matter again, can PD make you panic over the least thing? and make a mountain out of a molehill with everything, i know its not the meds because he's like this for a couple of years leading up to the PD. Everything is just to much to deal with and I mean everything and anything. Love hols x
Hi Holly

Your desciption of your husbands panic takes me back to the quiet depair I felt pre-diagnosis. I knew something terrible was going wrong and that I was failing at all kinds of things I had been able to do so easily but no-one could tell me what it was. Once I had the diagnosis I at least had something to blame and no longer felt like a fraudulent failure. Even so it does then take time to come to terms with everything and when you think you have then something gets worse and you need to reassess again. Give him support and time.
The simple answer is yes anxiety along with depression is very common due to our lack of dopamine. i am sure you will both feel more relaxed about it all one day but it does take time.
Hi Holly

In addition to contacting the PD nurse you can (as Samdog says) contact your PUK Information and Support worker. The contact details are under the 'Local to You' section of the web site. They are a tremendous source of practical help and support. You could also ring the help line - top left hand of the page.

With regard to your husband, it sounds as if he is finding it hard to accept both the diagnosis and the fact that he can no longer do things he used to do. He probably knew well before diagnosis that there was something wrong and felt/feels diminished because he can no longer do something simple like tightening a screw. I'm afraid, like many of us do, he is lashing out at the person nearest to him. My o/h also found it hard to admit that DIY jobs which he once would have dealt with quickly and easily were beyond his capabilities.

I sense there is much you are not saying and know that it is not easy to be in your position. But your o/h is probably frightened and angry at what is happening to him.

So no easy answers I'm afraid but you can always come on here and give vent to your feelings. There will always be someone to listen.

Worrals x
Hi, Thanks a million to all you good people, I will do everything I can to help my OH, I will do my best for him daily. I will be strong and positive for him, and keep him thinking positive at all times, thanks for contacts and pointing out PUK areas I was unaware of, love hols x
Hi Holly and worrals

I can relate to your OHs! Before dx I too felt huge frustration at not being able to do the jobs I once took for granted - and of course my partner took the brunt of it. I basically thought - if I can’t pull my weight, what’s the point in having me? Most things got rather better when I started taking meds (Pramipexole) - and those feelings of fright, frustration and worthlessness went away completely. (Until last week . . . but now at least I recognise them for what they are, and can try and deal with them: dr johnny has loads of advice on that score.)

PD affects carers as least as much as it does the PwP: my heartfelt thanks to them.

Semele x
Hi hollytree29,

I just wanted to give you a direct link on our website where you can find your local information and support worker (ISW): http://bit.ly/Y48O7L

Your ISW can also tell you whether there is a Parkinson's nurse in the area and how to get referred to them.

Hope it helps,