What are the right questions to ask the Parkinsons Nurse?


#1

Hello All,

We (I’m J’s fella!) are seeing the Parkinsons nurse later this afternoon and I’m looking for any advice on the type of questions we can pose, so not to waste their time but to gain the most out of the visit.

J (56) was diagnosed 2 years ago which was a huge shock, and was quite quickly put onto Madopar following 3 visits with the Consultant in Poole Hospital.

I work with a colleague who’s wife also has PD, but based in Bournemouth, and it comes across that the level of support and information flow is much greater than we have experienced so far.

J has seen the nurse twice in the past 18 months and explained her general well being as…

Tiredness
Muscular aching
Facial pinching / pouting
Slowness in movement
Voice loudness (decreasing)
Difficulty in swallowing…recent choking incidents

And there has been seemingly little or no change to J’s drug therapy, or much in the way of taking a different approach etc…

An example of my concern was when they were advised of J’s pinched facial expression, the Nurse said that she had not encountered that before and it probably wasn’t a symptom of PD. A few months later we went to a PD specific Dance / exercise event in Bournemouth and there were at least 3 people with the exact same symptom in a class of 16 individuals…not a bad statistical group to prove differently!

So I’m kind of concerned that we’re getting the best that Poole has to offer , and there could be better else where, or there’s really nothing we can do more…?

I’m intending to as in a constructive way what we should expect from their support, what and when would changes to J’s treatment be suggested and what might they be.

If anyone has any other advice, I’d love to have some…many thanks.


#2

Hi

My experiences with Parkinsons nurses have been variable, some of it good, some not so good. I experience extreme tiredness and my understanding is that there is very little that can be done about that apart from trying to keep up exercise levels - which is tiring in itself!

It might be worth concentrating on the voice and swallowing symptoms and simply making it clear that they are an increasing issue that the current medication is not dealing with and that a change is needed.

How often does your partner see a consultant? Mine calls me in every 12 months. I have generally found him more open to altering or trying different medication than the nurses.

The person truly on my side is my partner and it would be an enormous struggle without her help. Best wishes to you both.

John


#3

Many thanks JJ,

The reason for posting today was due to reading so many people refer to their PD nurses as “fantastic”, always willing to talk around the symptoms, and try to balance symptoms and drugs etc…

J called them up after a scary swallowing / choking episode three weeks ago and was told that she had an appointment in 5 weeks with the PD nurse and that’s the best that could be done!..not what I call very helpful to be honest.

We’re not looking for a miracle cure but someone with a little more experience to provide guidance, and be helpful.

Lets see what happens today


#4

Hi, a 5 week wait does not seem too bad. It takes nearly that long to get a gp visit in our local practice. The last i heard was there were only 10 PD nurses in the whole of Wales so they must have an enormous workload. As to what questions to ask, mine tend to revolve around giving my meds a kick to try to improve daily life. I think everyone of us with this horrible disease should have access to a specialist nurse. It is the least we deserve.


#5

Hello Papa.

Thanks for the response.

We met with the PD nurse who was new to Kane and apparently the new head of PD nurses in Poole so that was good.

The visit went well and J said better than before, with most of our questions covered before we asked them. We left with further consultations being requested as Is symptoms have changed, and with some general advice on what could be done to make the best if things.

It was certainly better than I thought it would be based on previous discussions…so lets see!

Thanks to all who have taken time to read or respond…