What happened when you was diagnosed with PD

Hi everyone
When you was diagnosed with PD did everything go full steam ahead after your meeting with the neurologist.
Since being diagnosed in June this year I have had appointments virtually every week sometimes more than one. I have had phone calls asking to come and see me the next day which of course I said no.
At present I am on 3 appointments for the next 2 weeks. October I am on 4. November 2. Plus GP consultation every month either face to face or telephone.
I have refused any for December because I love Christmas and don’t want anything interfering with it.
I am however having problems with the speech and language therapist who thinks they can just ring the day before they want to come. I have told them I have a few appointments booked and also need time to myself.
I have also decided that if the eye clinic doesn’t do anything or explain to me what is wrong with my eyes then I won’t be going back. I need new glasses but won’t go and get them until I know what is happening if they can’t let me know then I will go to opticians get eyes tested and take letter with me.
Ok rant over.
Has anyone else had lots of appointments straight after diagnosis and do they slow down?

My Husband was diagnoised 3 years ago and has only seen the neurologist 3 times and the PD nurse twice…last appointment was November 2018…so his appointments are not very often…
Make the most of the appointments and help you are getting at the moment,hopefully the support will continue…Good luck for the future…

:smiley:P.S…forgot to say:He has not seen the GP either since his diagnoisis…he was due a medication review recently and only saw the surgery nurse…when he questioned how could she review his sinemet,surely his GP should see him? …still awaiting that appointment too…:smiley:

Bub1 you are so lucky to be looked after so well. I certainly wouldn’t be complaining just make the most of it you never know when the services will have ‘cutbacks’ because of lack of funding.

I know I am very lucky.
Please don’t get me wrong but a couple of days off at the moment would help as I am not sleeping properly or even eating properly ( which I will mention to the neurologist when I see him on Thursday).
If it wasn’t for my Parkinson’s nurse I wouldn’t be seeing my doctor once a month but she put in her letter to them that I need to be seen/ spoken to once a month.
Our doctors are terrible for trying to get a normal appointment.

It does sound like a lot of appointments and does sounds exhausting. I think you need to be firm about how much you can manage and delay some of the less urgent ones.

Like everyone else who has posted though, I’m in the opposite situation. I see the neurologist once a year, I’ve only seen my PN once since diagnosis. I’m supposed to get medication reviews 6 monthly at my GP surgery but the last one they’ve recorded as completed on my patient record even though it never actually happened!

Our experience is quite the reverse. The neurologist once a year. The PD nurse once a year. I have had to phone, rant, fight and complain for everything else. Not that it was worth the agro. 4 sessions of speech therapy no more cos obviously he’s cured. 4 of physio cured again . 6 weeks of asking for some OT advice, and still waiting , all a bloody waste of time. Take what they offer but stay in control.

Thank you for that.
I will definitely stay in control now.
I know it can change at any time but it was getting me down.
It’s nice to hear other people’s experience with everything.
I fought for 2 years for some sort of diagnosis of my symptoms now every one is falling over their selves to help.
I hope everyone situation changes for the better

Wow that sounds like a lot of appointments but at least you have access to support,
Since my diagnosis I have seen my GP once to get meds.
From then meds on a repeat and waiting for an appointment to see either neurologist or PD nurse I’m told likely to be 6 months plus.

I’m curious what is the issue with your eyes has PD affected your sight.?

I don’t think it has.
My rheumatologist sent eye clinic a letter as she gave me a full mot she was the only one that listened to me.

I had so many appointments I didn’t know whether I was coming or going. I made sure everyone I saw wrote to me after the appointment so I could go back and follow what had gone on. My phone was filled with contacts like Jo physio red lipstick or Eye guy smiles alot. It does calm down.
I would make the most of the services that are available and thank the NHS, I have been so thankful for their support since diagnosis. They saved my life.

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