Underplaying at appointment

Quick back story - R was diagnosed 2 years ago with Parkinsons or Parkinson Plus. He is on rasagiline, refused sinemet.

Last year he had an over-the-phone appointment with the nurse in which he said everything was fine, call over and done it 10 mins.

Last week we had a face-to-face appointment. We created a list of new and worsening symptoms which we agreed on. However, when we got there R completely underplayed everything on the list and even questioned some of it in front of the nurse. He was having a very good day and that was that really. Had we gone a week previous it might have been a different story.

So we came out of the meeting with us getting no further with anything, in fact a bit worse off as she thinks he is cruising a long nicely.

I guess this is just a moan really but for the other person involved, I was hoping for a bit more from the appointment I guess. Now wondering whether we have to go via the doctor/optician for various ailments.

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Hello… yes, I think this must be common … what I suggest is ringing the Parkinson’s nurse yourself when you husband isn’t present and telling her all your concerns. The Parkinson’s nurses are there for the relatives as well. I hadn’t really clocked this for about 12 years as my husband was pretty high functioning untill just recently. I have emailed and rung our Parkinson’s nurse and it was really helpful.

Thank you for your reply, it is nice to know it is a known problem. It felt like such a wasted opportunity as I know that nothing now will change for a while - he won’t consider taking medication, his change in personality and memory won’t be improving etc.

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yes, it’s dispirting and I know I’ve had this same experience too…I think when you contact the Parkinson’s nurse and explain … even ask for another appointment… earlier than usual…

Good evening RachRob … 100% agree with what you say. It is a fact that us Parkinson’s men & woman have good days, average days, poor days & very poor days.

If we see the NHS Neurologist or Nurse we are asked how we are now. They should probably ask “How have you been since I last saw you?”

What I have decided to do from Tuesday onwards [Tuesday is my 70th birthday] &
is a good day to start. At the end of the day I have decided to give my day a mark out of 10. I take that score & I put it in my diary & at the end of the month I will add all my scores & come up with an average daily score.

About 3 weeks ago I sent an email to my Parkinson’s nurse. I had been on a full Sinemet dose for about a month & I had played bowls [very well] for 12 days in a row. I told him how much better I felt.

Only a week later I had a terrible spell of about 5 days. There was one day where I was bowling & had to stop playing after a few minutes. I had completely frozen & I’m told gone as white as a sheet.

When the 5 days were up I was back to feeling pretty reasonable.

So the average score will tell me what sort of a week I have had, what sort of a month I have had etc …

My Parkinson’s nurse seems to take a 6 month view. Telling me I will be on
2 Sinemet pills 3 times a day.

At the end of this 6 month period he will ask me how I have been & he will review the medication I am on in relation to the symptoms I am displaying.

Best wishes

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RachRob … The medication we take is a double sided coin. We have to take the plus side of the medication & counter that with the side effects.

If Rob has 120 good days & 60 bad days in a 6 month period is that a result you are happy with ?

Best wishes