My Problems with My Parkinson's

I have my 6 monthly appointment with my Parkinson’s nurse [PN] in two weeks time. I have been busy making notes on how my last 6 months have been. I have to say what I want to say as I will not get another chance for 6 months. My Neurologist
has left the NHS so this is my one chance to get anything added or changed.

What I see as my current Parkinson’s & Neuropathy problems are gait freezing, fairly extreme fatigue, heartburn, slight incontinence, very dry mouth, worrying vivid dreams, tight leg muscles & an uncomfortable lower back [now & again].

Since the PN took over my medication has changed from no Parkinson’s medication
to 3 x 2 Sinemet pills a day. To my mind this has been good for me as I seem to have slightly more stamina than I had before.

The other change has been my starting a weekly Neurological Physiotherapy session in my local Conquest Hospital Gym. I have had 3 sessions to date.

Of the 15 exercises we do in the available hour 3 of these bring on my gait freezing.
Probably not ideal but again I think overall I benefit from the session.

Best wishes

How long have you been diagnosed Steve, Ive been diagnosed 6 years and have nearly all your symptoms. No indigestion or incontinence yet but everything else. I have a Rotigotine patch every day and 5 caredopa/levadopa each day.

Hi im new to this ive had pd for 16 yrs now and im starting to experience problems i have off periods alot but my real issue is when ever i have sex im left feeling absolutley wiped out its got to the point where im nervous to even have sex and im im 52 yr old

Smart move jotting down notes for your appointment. Bummer about your neurologist leaving, but it’s cool you’re tackling things head-on. Awesome to hear the new meds and physio are making a difference, even if there’s a hiccup with some exercises triggering gait freezing.

Hello Margs1 … I was diagnosed with Atypical Parkinson’s by a positive Datscan around June 2023. But I had symptoms for about 5 years.


Hi Steve it sounds as though you have all under control. I wish you all the best.

Have you not been referred to another Neurologist? The PNS should be working to a Neuro.

Hello Douglas … No, I have not been referred to another Neurologist. My taking Sinemet was very much the Parkinson’s nurse’s decision. My previous Neurologist [who left the NHS] has returned to Armenia, was not a fan of Parkinson’s medication in my instance. He felt the side effects were worse than any possible benefit as I had Atypical Parkinson’s [Parkinson’s Plus].

The PN does have a very good reputation locally in this field.

Thanks for your interest.
Best wishes

Does your hospital only have one neurologist?

As far as I know it had one & he has left. I assume they are looking for one or they have one & I have not been informed.

I am not bothered as I don’t feel my treatment would be any different.
I think all they do anyway is get you to try a random drug & see if it helps.

Best wishes

The general advice is to be under a Neurologist who is a Movement Disorder Specialist. What part of the country are you in?

Sussex / Hastings.

If you can travel up to London, I would consider getting your GP to refer you to the National Hospital for Neurology and Neurosurgery, given your particular diagnosis.

Thanks Douglas … I am seeing my PN in a week or two. I will see if it can be arranged.


My hospital only has one neurologist and he only works two days a week for the NHS and two / three days privately. He has been ill recently so there has been no one. Its very frustrating.

@Margs1 It is worth keeping in mind that we have the right to choose which hospital we obtain our treatment from.

Yes but you have to go to your doctor and be referred again. Then probably go to the back of another waiting list. But thanks for replying.

I guess you have to balance the process with quality of care

Could it be a cycle of anxiety/worry type issue related to medication but i’m no expert