I saw Parkinsons Nurse

Hi Everyone
I saw my Parkinsons Nurse Holly today for the first time.
She was lovely, nothing was rushed. We went through everything.
I will be seeing:
Pyhsio, OT, Speech Therapist and someone for incontinence.
I will also be seeing Holly every 3 months or before if my medication changes.
She has given loads to read and contact details of my local Parkinsons local advisor.
I also have Hollys email address and contact details.
My care plan will be typed up and sent to me within the next couple of days.
My son came with me and he was telling Holly things I hadnt even noticed, like going left when I should have been going right lol.
She is going to look into a few things for me which is good plus she also apologised about the wait to get someone to take notice of what I was telling them about my symptoms (2 years).
Another thing she said was go onto the Parkinsons site and the forum. Which I already have.
I did tell her about the ESA Medical coming up and she has noted it all down and said let her know how it goes on tuesday. Which I will.
I would like to say a big thank you to everyone on here for being there when needed.

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Bub, good to hear that you had a positive visit with your Parkinsons Nurse(not that I doubted you would !!). It is great to see that you have at last got some sort of peace of mind, it is onwards and upwards from here. Regarding the Parkinsons Forum we are all here to support one another to get the best experience for you and anyone else who requires it. I, personally, have been happy to have been able to help you in your quest and will be about should you need my help again. All the best Bub and have a great weekend.

Les

Thanks Les.
Holly couldnt praise Parkinsons UK highly enough.
Have a good weekend yourself.
I will have a wonderful weekend if my fridge freezer turns up as it should do this afternoon.
Jane

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Hi @Bub1,

I’m really glad that you’ve had such a positive experience with the Parkinson’s nurse and I’m happy that you’ve found value in the forum. :relaxed:

Best wishes,
Reah

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I have been waiting nearly 3 years to see a PD nurse, finally got a letter to say I am now on their waiting list to be seen but they can’t say when. I am hoping I will find it a supportive as others say it is. It’s been a slog but after nearly 3 years my GP is now far more engaged with my treatment and condition. He is now actualy talking with / to my excellent neurologist Professor Roger Barker, though the offer has always been there to do so. I know GP’s & nurse generally are all stretched and pulled in all directions but things are getting better for me in medical support. No longer only a 10 min appointment I now get a 20 minute GP appointment fitting in with my work :sunglasses:

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Hi @jps1926,

What I don’t understand with your case is the fact that it has taken 3 years to see one, surely you could have done so long before this unless the area in which you live there is a particular shortage but even so 3 YEARS, really ?? Keep the Forum informed on your progress.

Les

So @Bub1(Jane), you’re feeling pretty chilled out now with your fridge freezer !! LOL Forgot to mention about your son before, I am so pleased to see that he is so supportive of you. Also the fact that he has made observations about you and was able to relay these to the Nurse in your presence, this is a good thing. My stepdaughter made an observation about me to her Mum when I was out of the room and I didn’t find out until a few days later. So I sent her a message to the effect that she can talk to me about anything different she has noticed in me as I am more than happy to discuss my condition in the open rather than sneaking around and feeling awkward. It is better to be up front about the condition and be able to talk about it rather than sweep it under the carpet and keep it as a dirty little secret !! Sorry to sound a bit heavy but I was annoyed that my stepdaughter couldn’t bring herself to mention an observation to my face. To any others reading this post, I urge you to tell your family and friends not to shy away about talking openly to you about Parkinsons, it is part of our daily life and we have to live with it !!

Les

Hi Les
Yep fridge freezer finally turned up. An hour after out timed delivery slot which we paid for so have now got that back.
My son and I have a really good relationship as we have been through a lot together in the past.
I think it’s a good idea to tell people to tell you if they have noticed anything different. But I do think that some people get offended if told.

So lots of reading to do this weekend with what PN gave me. Also to get paper work ready for ESA assessment on Tuesday , Plus the fridge and freezer are both filled up nicely you don’t realise how much you miss a freezer until you haven’t got one, even though when I was little my parents didn’t have one and used to go out every day for food.

I am sorry you have had to wait along time. I know there are shortages in some areas of Parkinson’s nurses maybe you could try and get referred to one outside your area.?
Glad your neurologist and Gp are communicating that’s a help.
Please let us know how things go

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As you will all know, we each have to find our own way to live with Parkinson’s be it the one who has been ‘chosen’ or the one who ‘helps’ but I would agree wholeheartedly with Les and encourage others who may be hesitating to be open about Parkinson’s. I decided at the beginning to tell people and whilst I admit there is no easy opening line, once said it quite quickly becomes old news of itself but it is easier to ask for help if needed and to say thanks but no thanks if needed. If it is of any help what I did to friends and colleagues was to speak to them individually along the lines of I have something to tell you, you don’t have to say anything/you probably won’t know what to say but that’s ok come back to me if and as you want. I have PD, I am ok and nothing is going to change much right now…’ To folk I couldn’t see face to face, rather than have them struck dumb in a phone call I basically put the same thing in writing. Can’t deny it was exhausting letting everyone know quickly but it was a once only and a huge relief they all knew. I hope this helps you decide what is right for you; this worked for me then and I continue to be open about it now.

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I think jps 1926 experience is probably closer to the norm than the OP. I was diagnosed two years ago. I saw the Parkinson’s nurse for the first time six months ago, and then only because I made a PALS complaint. My meeting with her was quite short. I was given another appointment for July, but that was cancelled by the hospital with no reason given. I now have another appointment for later this month, but whether it will actually take place or not is anybody’s guess.

I had a similar experience to the OP when I saw my Parkinson’s nurse. I was there for about an hour and she was very thorough and helpful. She promised to email my care plan and lots of other information to me but this didn’t happen. To be fair I haven’t chased this and also haven’t made a further appointment (although she said to come and see her every 3 months) - not because I don’t think it useful but because my symptoms are currently quite mild and not progressing fast so I don’t think I need another appointment yet.

Must confess that where I lived before in Cambridgeshire my Parkinsons Nurse was very disappointing in as much that she wasn’t so bothered with me and my condition whereas down here in Devon it is a totally different ball game and my Nurse here is brilliant and will give answers and help whenever I need it. On the subject of being able to talk to people about observations made on your condition, I appreciate that everyone is different and may not wish to be open to discussion. My point is that i’m one of those who doesn’t take offence, I would rather talk about it to allay peoples perceptions and explain that no two sufferers are the same in that we all have different side effects with it. I will also tell people that I have poked fun at myself in the past and will continue to do so.

@Bub1, Pleased that everything went well with your fridge freezer. So pleased that you and your son get on really well. I will be thinking about you tomorrow and will look forward to your report back on how you got on.

Les

Bub1,

I hope that you may be able to continue to see your Parkinsons nurse on a regular basis and they continue their support.

Sadly our local P nurse, since their appointment, has either been off on long term sick leave or maternity leave. They are also too busy to attend our branch meetings, even once or twice a year for an hour, as, " the consultant wants me to be in clinic “TO LEARN!!” What??

They never visited my OH on their many admissions and long term stays in hospital over the last 2 years, were not even aware that my OH was an inpatient until I contacted them weeks later. No home visits either. What is their remit and job description?

We raise money for putting in place P’s nurses BUT they are not specialist nurses, and, as received recently from admin, there is NO specific training for them to be appointed in post.

PWP deserve more than just a nurse who wants a 9 to 5 job and not on a ward. It’s an easy life being a P nurse.

I will also have a rant about doctors, who are not neurologists, messing about with medication when they have no idea about the PWP! Doubling medication which led to confusion and hallucinations with out reference to those who knew the PWP best. The doctor dealt with stroke and many other conditions and was jack of all trades and master of none. So ill informed that he still called the condition Parkinsons Disease. The word disease was eliminated from the now PUK years ago.

Rant over for now.

Hi @benji,

I’m so sorry that this was your husband’s experience with his local Parkinson’s nurse. I also know your husband recently passed away and my condolences for your loss again. If you can send me more details on this (e.g. location, time period, name, etc) via private message, one of our campaign advisers can look into this for you and raise these issues.

Best wishes,
Reah

Hi benji
So sorry for your loss and I can understand you being upset.
I don’t think all Parkinson’s nurses are like that.
But all areas are different.
Please contact Reah

Hi @cruisecontroller and @Bub1 well finally got a letter with an appointment date of 22 August so not long to wait now. I guess I should start a list of questions and concerns. Anyway I have obviously accepted the appointment though this has meant having to get more time off work for yet another medical appointment. Which I am sure will be raised at my quarterly performance and development meeting on 15 August, which should have been held in June but has been put off numerous times. I doubt anything sinister as it will now be held 6 weeks before my latest project should end. Hoping for another project where I can be home-based for most of the time. Anyway I will let you and the forum know how both went later in the month.

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Please make sure you go to the appointment and make a list of things you want to ask.
I had letter from my PN this morning outlining everything we had talked about and what the next plan of action was and who she had referred me to. Also included was my next appointment date in November.
So please go.

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I will definitely be going as I am not going to pass up any assistance which can let me and my Wife enjoy life and our holidays. Sounds like you had a good last visit, I am going with an open mind and a list of questions. I will let you know how I got on :sunglasses:

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