Parkinson's Nurse

About me Introductions and personal stories
1

Today I had my 6 monthly appointment with my Parkinson’s nurse at the Conquest Hospital in Hastings, Sussex.

How many Parkinson’s patients would you think were on his list? He is supposed to have a maximum of 300 patients. Answer later.

I had done quite a lot of work on preparing for my appointment. Since March 5th 2024 I have been marking each day out of 10. From this I was able to tell him that
I had 8 bad days, 8 ok days & 26 good days. He said he found this information useful.

I listed my symptoms …

DRY MOUTH He said that was Parkinson’s

HEARTBURN / INDIGESTION Again down to the medication & he has prescribed Omeprazole.

FATIGUE Parkinson’s & medication.

TIREDNESS Parkinson’s & medication

VIVID DREAMS Sinemet & he has suggested I take my last batch of 2 Sinemet at 5pm instead of 7pm.

HEAVY LEGS My diagnosed & tested Neuropathy. He is referring me to a Neurologist.

TIGHT LEG MUSCLES See above.

FREEZING Parkinson’s / Neuropathy

***UNCOMFORTABLE LOWER BACK & LOWER NECK *** I had an Mri Spine scan.
The pain coincides with damage that showed up on the scan.

INCONTINENCE Parkinson’s.

HANDS SHAKE WHEN I EAT Parkinson’s.

He showed me my brain Datscan which he said shows that my Parkinson’s is mild & at an early stage. A late stage Parkinson’s Datscan is just a “dot” … my dot had a tail.
But 100% Parkinson’s in his opinion. I had asked if my symptoms might be only Neuropathy.

He told me that normal Parkinson’s patients had a special walk that he could spot at 50 yards. My walk, although quite impaired was clearly down to Neuropathy.

He wants to see me again in 6 months after I have hopefully been seen by a Neurologist for my Neuropathy.

My Parkinson’s nurse has 750 Parkinson’s patients on his list. 450 higher than ideal.

Hope the above is of interest. Any questions please ask. Comments also welcome.
Best wishes
Steve2

2

Hi Steve. I posted a link a couple of months ago to a news link stating there is also a severe shortage of PD nurses. Most of the one’s currently in post are at an age or tail end of their careers that they are nearing retirement, with not enough ‘younger’ medical professionals coming through.
I also saw my PD nurse today. She has 500 on her books :see_no_evil:.
Luckily, she has a policy where you can call her if you’re having issues, leave a message and she calls you back in good time to chat and resolve things or discusses with Neurologist.
Cheers

1 Like
3

Hi Steve2,
Forgive me for saying exactly what I feel, and totally ignore it if you think it’s tripe.

This guy just seems to be giving you rote answers based on specific phrases.
If they work great , if not he will give other stock phrases next time.
It would seems as if an AI could give you better responses with more thought.
Honestly it seems as if all he wants to do is get you out as soon as possible to repeat the same with his next patient.
Oh and his statement that ‘normal Parkinson’s patients had a special walk that he could spot at 50 yards’ is total and complete tripe.
You know that we all are different and unless we have reached a specific phase in our PD, there is no way in hell he could.
So please see that Neuro and let him actually explain what the situation and process is.

4

Parkinson’s Nurse? What’s one of those? If only my Husband could see one…the one he has, has cut her hours down and days, so is never really available even when she was working full time he never saw her. The only reason we know she has cut her hours down, is because we were told at a group we go to by other people…sad to say the support is getting worse, cannot see a consultant or PD nurse these days​:worried::worried:

2 Likes
5

Good afternoon CliveV … I thought it was a very positive meeting with my Parkinson’s nurse. I have got an appointment with a Neurologist to look into my mobility caused by Neuropathy rather than Parkinson’s.

I do not want to change my medication or add to it.

My Parkinson’s neurologist has left the NHS so the Parkinson’s nurse is all I have.

I only know two other Parkinson’s sufferers & one clearly has a Parkinson’s walk as you can see on Youtube. The other man walks perfectly but his arms shake.

I do agree that we can all act differently to the norm.

Best wishes
Steve2

6

Hi Babesbrown,

I’m so sorry to hear that.
I’m sure that someone on the group can give you good advice.

7

Hi Steve2,
That’s great that you have such a great rapport with your nurse, that always makes a difference.
Of course people do have " parkinsons walk" however to say that they can tell from 50 yards away honestly makes no sense.
I have had Parkinsons for over 3 years now, and I as a myriad other ‘normal’ PD, people still walk perfectly well, for him to say that he could recognize my walk as well as others simply makes no logical sense whatsoever.
However he is obviously working well for you, and that is all that matters.

8

I believe the neurological service in my area is under pressure I have had three neurologist appointments cancelled and the pd nurse has gone absent, I use to see her every 6 months. My theory is it’s down to the COVID jab causing more neurological problems, I know this is a bit controversial at the moment!

9

Our experience was similar. Husband diagnosed just before Lockdown after 25 years of symptoms. Consultant appointment 15 minutes once a year now down to 5 minutes. Husband had one appointment then one call from PD nurse in Lockdown then nothing. Mentioned this to consultant last year 2023. 6 months later appointment with PD nurse. Her greeting to my husband was, it must be a year since I saw you, and to me, lovely to see you again Mrs Holden. I firmly pointed out she hadn’t seen him for 3 years, and I’d never met her before…Covering herself for neglecting my husband, whose memory was very unreliable due to PD. How many others did she not bother with for 3 years? Disgraceful

10

Hi Steve
I whole heartedly agree with your comments.
The bottom line is they have no answers and trot out the same questions and answers at every appointment.

Until someone comes up with a new treatment we’re stuck with the neurologists and PD nurses who probably get paid quite a lot for all saying the same things.
Best wishes

1 Like
11

I think most of you are not understanding what my post was saying [probably my wording]. I thought the meeting with my Parkinson’s nurse was excellent. I was listened to, I was not rushed & I got what I wanted which was a referral to a Neurologist for my mobility issues, which were probably my Neuropathy rather than my Atypical Parkinson’s.

I do see him every 6 months despite me being one of his 750 NHS clients [should be 300]. He is clearly under an incredible amount of pressure what with him being the only NHS PD nurse in my area.

He has a very good reputation amongst every GP I speak to. They all know him.

Best wishes
Steve2

12

I hear you Steve. I think the PD Nurses and Dr’s we have are doing an excellent job under enormous pressures. I appreciate the frustration from some but the issues discussed above run far deeper and our current PD medical professionals are not to blame.
@Lar it’s a postcode lottery, as they say.
Cheers

13

I think the NHS could be organised so much & use the technology available.
For example a follow up Skype consultation.

Also why don’t they use emails rather than letters?
They do send reminder texts.

Steve2

1 Like
14

Hi Steve I think what you have said summs it all up you have written down some interesting points. I think the reason some are coming back to you with negitive points is that we have had PD for so long and each time we have an appointment we are told the same thing, Now please don’t take this t he wrong way I think PD nurses do a grand job they have so much to learn but PD has so many strings to its bow and we are all wanting answers, Each day more and more people are getting PD and its only by a lot of testing they will find an answer and hopefully a cure, Just one more point NOW I don’t want you all to come and live in Nottingham but we have 4 Parkinson’s Nurses here, Maxine/Clare/Jenny/ can’t remember her name but she has just joined us.

15

For what its worth I would like to add my feelings to this discussion. My husband who is 90 yrs old was diagnosed with PD in 2019 after 10 yrs of a so called essential tremor. He has seen a neurologist twice, once on diagnosis and in August 2022. The neurologist confirmed a follow up visit in April 2023 and this has not happened. He has had one face to face meeting with a Parkinsons nurse since diagnosis and one telephone follow up. After considerable pressure the Parkinsons nurse agreed a home visit today and I have been told an hour ago she is not coming as a clinic takes priority. That is where we are now and I as his wife and carer feel abandoned and isolated with a very elderly husband who is extremely frail. My conclusions are fairly brutal and although there will always be good dedicated Doctors, Nurses and Consultants there are in my opinion a fair number who are just not interested in PD. It is a degenerative disease with no current cure and the medication has generally remained the same for generations. Listening to ‘Movers and Shakers’ podcast only confirms this disinterest particularly in the manner diagnosis is delivered by many neurologists. Our experience was ‘Sit down, I can tell you have PD as soon as you walked in the door’. So we battle on getting nowhere with so little support

1 Like
16

Hello Merty … So sorry to hear you are having problems & so little support. Have you contacted the PCN Social Care. They have helped me a great deal. Also why not give the Parkinson’s nurses here a call on 0808 800 0303 & have a talk to them.

Talking to someone does help, especially those that understand.

Very best of luck.

Steve2

17

Hello again Merty … Why not compile a list of the things you & your husband need help with.

I would also suggest keeping a daily medical diary of the day to day health issues your husband has.

I do keep a diary myself. Good day, ok day & bad day. How I slept, problems I had etc
This helps me as I do forget how I have been. I certainly have more good days than bad days.

Steve2

18

Hello Merty … me again. I assume you have spoken to your GP about your struggling to cope. That might get some action. GP’s are hot on “mental health” these days.

Steve2

19

It sometimes feels like the patient is more a specimen to be studied. I’m sorry you feel abandoned. It’s a lonely place to be. I hope you get more help soon

20