Parkinson's Nurse


#1
Hi everyone,
I was just wondering if anyone has had any problems with the Parkinson's Nurses?
I have heard so many great things about them, and sadly the meeting with the nurse was pretty upsetting really.

My mum was diagnosed 3 years ago at 45. She is a sales director of a large company and is doing amazingly. She still has some symptoms, stiff leg and some discomfort. However, she is otherwise in super health and has a very positive attitude. We are a very close family so during the sad times we always pull together and pick each other up. We keep a positive outlook and laugh a lot.

I went with my mum to see her Parkinsons nurse in the West Midlands area and have to say I was shocked at how bad she was. It was quite obvious that the nurse seemed pretty miserable and negative from the start (which doesn't seem great when you want PD patients to keep positive). However, I thought she was meant to be there to help and offer support to my mum. We are all fully aware of what can happen with people with PD and bad syptoms that can arise, however when the nurse just quizzed my mum with the following questions:
Do you dribble? Can you manage to dress you self? Can you still manage to do the the toilet normally? I could tell it was pretty upsetting for my mum. She has very mild symptoms and is very much living each day as it comes. However, the meeting was just depressing really and didn't offer anything positive at all. I honestly felt like the PD nurse would have prefered my mum to come in and be totally miserable, dribbling and in a wheel chair. She didn't offer anything positive. When my mum sat down, she explained her life, runs a large company, sociable and the symptoms that she has. I would have thought that the nurse would have worked out that my mum can walk (and doesn't need a wheel chair), doesn't dribble and can dress herself! The nurse also asked if my mum would consider moving to a bungalow and that she should consider getting rig of our labrador since our family pet could be a trip hassard. The nurse took negativity to another level.

My mum won't be going back to see her as she was a nightmare. It is just so sad really, since a lot of people say how great their nurses are etc.

The nurse really wanted to focus on all the worse things of PD. She asked

Right...rant over... back to helping my mum kick PDs ass and reassuring my dog that we are not kicking her out ;)

If anyone has any advice, or a great PD nurse that we could steal please let me know.

Tabbybell

#2
Hi Tabbybell,
so sorry to hear about your mum's bad experience. I'm 48 and recently diagnosed, i had a briliant first experience with my pd nurse and bad second experience with my neurologist ticking me off for not starting prescribed medication. Nurse started off telling me to postpone any meds for as long as poss due to eventual side effects and as i wasn't too bad this is what i did. But after tellng off from neuro she started to change her mind and recommended starting low dose meds (my suggestion!) I have relectanly started 1 62.5mg Sinemet 3 x daily and not sure if i'm getting benefit or not or if i could poss do without! My symptoms vary weekly and i feel mainly they are copable? Before i started i phoned the pd nurse for un-biased advice on this web site (apparently there are 4 of them) she instinctively knew what my concerns were and was about to agree with the delay tactic then when i explained my mild symptoms and advice from my own pd nurse she went with the starting low dose meds response. I'm going with the theory that my own body will decide when i need to ask for advice or increase meds and that i must remind myself not to feel presured or buillied. My advice is to phone this websites nurses and talk through your concerns (bear in mind they all know each other around the country) keep looking and chatting on this forum as the best support and practical advice is here. I hope you manage to find a supportive nurse and your lovely mummy keeps up her positivity. There's many a scary thought for the future and i feel about the same stage as your mum and she can e-mail me for a chat/share notes whenever she wants.
We're both lucky to have such caring daughters.

Best wishes

Diane

#3
Hi tabbybell

I have seen my PD nurse once and have to say that I wasn't impressed. She arrived 15 minutes late, asked me a few stock questions to which she seemed too preoccupied to listen to the answers, then chucked some leaflets and a DVD at me before rushing off. That was a year ago and I haven't bothered contacting her since.

Having said that, your mother's experience sounds truly appalling and it must have been very upsetting for you both.

#4
Hi Tabbybell,

What encounter. Too silly for words!! Although I've sort of gone off my PD nurse for my own reasons, I was given (after a delay of some months) an initial interview which took as long as was needed in my own home and answered all of the questions I had accumulated whilst waiting to be seen. I was was aware of being assessed informally while the discussion was going on which I would have thought was the obvious way to do it when a person is in the early stages. She may have been obliged to perform some sort of baseline assessment but if so could have made light of it and said that whilst obviously most of the questions would not be particularly relevant to your mother at this time she had this form to fill in. Its called communication skills which unfortunately some medics, often neuros seem to lack entirely. It reminds me of the time when I was going down with my 18 month old son in the lift for his hernia operation when the nurse observed how terrible it was when a child died after a operation.

#5
Hi Tabby,

Welcome to the forum. Maybe as has been suggested, call the helpline above. Also think about lodging a complaint. As if you guys have not got enough on your plate without having to go through this. Not everybody gets all the symptoms and I guess your mum at her age and the relatively short length of time with PD would have very few symptoms. Maybe asking your mum (and you) if you both have noticed any changes in your mum over the past x months would have been a better way, but what would I know :sunglasses:

Wishing your family the best,
rico

#6
This sounds absolutely dreadful and I hope is a one off bad experience. The lady I work for has Parkinson's and the nurse that visited her was very understanding and helpful. My client is 85 and quite advanced in her Parkinson's in some ways. But she was treated with great respect. I don't know what other 'posters' would say, but if I were you I would a letter of complaint, in great detail, giving your concerns. Nobody should be behave in this way. It is not only unprofessional, it is unkind and frankly stupid!! Bad practice should be noted and flagged up. Hope you have better exeriences in the future and wish your mum and you all the best.

#7
Hi Tabbybell,

I read your post with great interest, and have had a similar experience with my wife some years ago and fully understand your concern, however you sound to me like the kind of person, and have the kind of family that will get through this.

It can seem like a 'Bear Pit' sometimes, where all the people you know have the ability to bring you too your knees, be that well meaning relatives or friends. They all assume they are experts concerning the PD (Only because they have managed to read a website, and invariably know someone, as we all do, who has PD), and somehow think that it is there responsibility to empart their thoughts on you .... often needed like a hole in the head !.

Regarding the nurses, and quite often other medical professionals, they have the qualifications because they are able to pass exams, always speak to people when they are often emotionally on their knees, and have the bedside manners that often leave me speechless, but amazingly allow this power to go to their heads. You might as well ask King Herod to run a cresh !!. The only people in this club, with any complete expertise are the ones living with people who have the condition, and I think 'Hats off to them', as they 'Walk the Walk' and don't just 'Talk the Talk'

I have found in the big scheme of things that a person like you, being the member of a 'close knit' family, with an infectious attitude to laughter, life and fun is the secret to dealing with this condition.

We are all on this train and nobody knows which station we're going to stop at, but as long as a person like you is driving the engine, the drugs, the nurses and the doctors are merely bystanders that occasionslly have to put the coal in the boiler (and if they're not there you and your family can do it)

Continue to be strong, there are people out here who know what your going through, and I'm sure will be there when you need them most remembering 'footsteps in the sand'

Speak soon

Catalyst:sunglasses:

#8
Hi tabby have just started on meds i have lovely PD nurse , i am not used to going to the doctors and suddenly having all these appointments overwhelms me i know that it is my fault if i do not have enough contact with my PD nurse as she keeps telling me to phone her if i have any problems i think i have to learn to trust her. I have an app to see the physio, one to see speciaist at hosp abowt cartilage in my knee , have to get my doc to check blood pressure as keeps dropping just not used to it

Take care
Chris

#9
hi there,

I have nothing but praise for my PD nurse, she is friendly and very understanding i was diagnosed 4 years ago at the age of 41 she has had to be blunt with me at times but it is for my own good not sure whether allowed to name so will just say i live in suffolk.

#10
Hi Tabbybell, I have to agree with you. When my husband(52) first went to our local PD nurse when he was diagnosed a few months ago he came away more depressed than when he was told he had PD. Like your mum he was asked all the silly questions and the only symptoms he has is some stiffness when walking. All he was looking for was some positive outlook. We understand no one can say how long you will work for or how quickly your symptoms will progress but there must be some positive outlook somewhere. Even to say to him you are still young and fit and can work for as long as you can instead of saying I don't know....... It is quite depressing to think that the one person you should be able to go to for help is not very positive at all. What ever happened to caring nurses!!

#11
Hello Tabbybell and welcome to the forum. what nasty experience for you and your mum, but you know, just as in life there are bad and good in any profession. Pity you and mum seemed to get her though!!!!

You mum sounds as if she is coping very well with her diagnosis and it doesn't seem to be affecting her too badly in work or in her life.

I have been dx for over ten years now and worked as a full time child protection social worker for my first 8 years after dx. I never saw a PD nurse, in fact I've only just been appointed one last year. I was like your mum and just got on with my life, I took no meds for a while. In fact I only went on the meds when I felt that thee pd was affecting my work ect.

My advice to your mum would be don't start on the meds if you don't feel that you need them yet. Once on them the clock starts ticking and the meds have a time limit that they work. It will be many years of meds and as your mum is still quiet young the longer she can manage without drugs would be better. Obviously there will come a time when she will need them, but this is very much a patient led condition, therefore it's important that your mum stays very much in control and not be bullied into anything.

I do wish you and your mum, she is lucky to have you for support. take care

Glenchass

#12
No idea my mum was meant to have a Parkinson's nurse... first I heard of her, it was 10 years in and she was advising that my mum should go into a home. Charming!

Frankly you'd be as well on this forum.