I have my once every 6 months appointment with my Parkinson’s Nurse tomorrow. Tomorrow is not a good day for me. Why you might ask.
My lack of keenness to see him is down to the fact that I haven’t felt better for at least
18 months. What am I going to say … I did contact him to tell him I felt great & was there any point in seeing me. But he wanted to see me so I have to go don’t I ?
The last thing I want is for my 6 monthly consultation to be changed to 12 or 18 monthly.
We all have good periods & bad periods don’t we. Who knows how I will feel in 6 months time.
I normally write a long list of questions for him. But today I cannot think of anything to ask, other than why am I feeling so much better.
To part answer the question … “Why am I feeling so much better now than I have done
in the last 18 months”.
Possibly and probably it is when I take my Parkinson’s medication, which is Sinemet, and the quantity of Sinemet I take.
I have gone from taking 2 pills x 3 times a day, 7am, 1pm & 6pm to taking 2 pills
x 2 times a day 7am & 1pm.
Sinemet is said to cause Insomnia & other sleep related issues. So now I don’t take
any evening pills.
On days I don’t play Indoor Bowls I only take 1 pill x 2 times a day, 7am & 1pm.
I now feel less tired and I still seem to get the benefits I got when I did take the full dose.
I have done this in consultation with my most recent Neurologist & this is our joint decision.
Also, probably unrelated, the numbness in my left leg & foot has almost completely gone. It left me about a week ago. I cannot logically explain how this has happened.
Unfortunately my gait freezing is as bad as ever & my legs still feel fatigued after
walking around fifty to eighty yards. But I am better than I was.
I’ve just had an appointment with my Parkinson’s nurse cancelled because she is on long term sick leave and she was the only nurse in my area and they are not putting in place any plans for a temporary replacement for her.
The Parkinson’s nurses are few and far between and do an amazing job.
My next appointment with the Neurologist is scheduled for June 2026!
So am obviously feeling quite anxious about not knowing when anyone is going to be able to review me and my worsening symptoms
Hello Dawn … I have not seen an NHS neurologist for 18 months. I think I am on someone’s list but have no appointment to see them.
My Parkinson’s Nurse had 320 patients on his list where it should be 150. A lady did sit in on my last appointment and is being trained, but I didn’t rate her as someone I would like to see.
There really should be someone seeing people like you who have a real need to see someone.
Don’t forget you can speak to a Parkinson’s nurse here free of charge.
Hi Dawn, thank you for posting and we’re really sorry to hear this. We know more nurses are needed as the care they give is vital.
Our helpline team can give advice regarding accessing support, and you can ask to speak to one of our Parkinson’s nurses if you would like any guidance. It’s free to call: 0808 800 0303.
We hope that this helps you to access the support that you deserve.
I saw my Parkinson’s Nurse today. He actually has 700+ patients not the 300+ I said.
He is training up two assistants. He is quite happy to see me in 6 months time and reschedule if I am feeling hunky-dory.
He told me that there are around 40 different symptoms of Parkinson’s. Sufferers can get every combination of symptoms, that is why his patients can be so different to each other.
That’s an important question timing really does make a difference when visiting a Parkinson’s nurse. From my experience with a family member, scheduling appointments earlier in the day, before fatigue and medication fluctuations set in, made assessments and discussions much more accurate.
Has anyone else found a specific time of day that works best for them?
Thank you for sharing how you’re feeling ahead of your Parkinson’s nurse appointment. It’s completely understandable to have mixed emotions about these visits, especially when you haven’t felt a noticeable improvement for a long time. It’s great that your nurse wants to see you—it shows they’re invested in your care and keeping a close eye on your condition.
Feeling better, even if it’s unexpected, is definitely something worth discussing in your appointment. You might want to mention what feels different, no matter how small, so your nurse has the full picture and can help monitor and build on that improvement. Even if you don’t have a long list of questions this time, sharing how your symptoms have changed or any new feelings you’re noticing can be really helpful.
Remember, these consultations aren’t just about changes or new issues—they’re an opportunity to reflect on your overall wellbeing and adjust your care as needed. And it’s totally normal to have ups and downs with Parkinson’s; your nurse can help you navigate those.
If you feel comfortable, you might also mention your concerns about the frequency of appointments. Letting your nurse know you want to keep the 6-monthly check-ins for now can help ensure you get the follow-up you need.
We’re here if you want to talk more or need support after the visit. Take care!
Good evening Rhea … As arranged I saw my Parkinson’s Nurse yesterday. I was at the appointment early & saw Mike my Parkinson’s Nurse 15 minutes early as his previous appointment was happy with his medication & was in and out in 10 minutes.
I was much the same … although the consultation started with him reading the copy email from the neurologist I saw privately about a month ago.
This neurologist’s opinion was very different to my first NHS consultation I had back in June 2023.
I am now happy with my current mild Parkinson’s diagnosis as I know that taking my Sinemet medication does improve my issues.
Very frustrating that my “gait freezing” is not though to be Parkinson’s related by my neurologist and my GP thinks it is Parkinson’s. So neither entity will consider trying to treat it.
God knows what causes my poor balance & the 6 falls I had during a recent Indoor Bowls match. Perhaps I am imagining it.
My Parkinson’s Nurse is happy to see me in 6 months time & reschedule if I am feeling fit & well.
I do feel guilty that I am taking an appointment I don’t really need & someone in need is missing out.
Hi Steve, thank you for sharing this update with us. Please don’t feel guilty for speaking to your neurologist about your health concerns. It’s really important that you get the support you need.
We’re glad to hear that you’re happy with your current diagnosis and treatment. It’s understandable that you feel concerned about your gait freezing though. We hope that you receive the support you deserve for this.
Remember, if you ever need us we’re just a phone call away: 0808 800 0303.
Sending all our love,
The Parkinson’s UK Moderation Team
