What do I tell my Parkinson's Nurse?

I have my 6 monthly face to face Parkinson’s Nurse meeting in three weeks time.
What do I tell him?

The two big Neurological occurrences for me in the past 6 months have been …

  1. My taking 6 pills of Sinemet a day [Parkinson’s medication], previously no medication. I feel this has improved the stamina I have. Before Sinemet I struggled to play my non-energetic indoor 2 hours bowls game two days running but now I can play every day with the odd bad day where I have to drop out thrown in.

  2. I have doubled my Amitriptyline dose [which helps my Neuropathy & Arthritis] from 10mg a day to 20mg a day & I now feel that my leg muscles feel better, less rigid.

On the downside I feel more fatigued & my eyes hurt quite a bit, strangely I feel fatigued but I can do more, does that make sense?. Is this caused by Sinemet or the increased Amitriptyline I now take or the recent addition of Beta Blockers [Bisoprolol]. Or simply that they don’t get on with each other.

Of the past 15 days [I mark each day out of 10 each day] I have had 3 very bad days, 5 ok sort of days & 7 good days … So from that I would deduce that my new medication routine is working for me … But how do I assess the 3 very bad days, that were very bad days & that is 3 very bad days too many.

One other new thing for me is my weekly 1 hour Neurological Physiotherapy sessions at the Conquest Hospital. There were only two of us doing the course so we had 1 to 1 assistance. Twice my expert [who has done many of these Parkinson’s sessions, told me that my inability to do a particular exercise was “typical Parkinson’s”.

I find some of the exercises I am asked to do bring on my “freezing episodes”. This pleases me on one level but upsets me on another. These exercises are so simple but I can’t do them.

Thanks for reading.
Any comments or questions anyone?

During your upcoming face-to-face meeting with your Parkinson’s Nurse, it’s important to discuss the significant changes in your medication regimen over the past six months. Specifically, mention the positive impact of taking 6 pills of Sinemet daily, which has improved your stamina, allowing you to play bowls more frequently. Additionally, inform them about doubling your Amitriptyline dose to 20mg daily, which has alleviated rigidity in your leg muscles but has also led to increased fatigue and eye discomfort. Ask whether these side effects could be attributed to Sinemet, dgcustomerfirst survey, Amitriptyline, or the recent addition of Beta Blockers (Bisoprolol), or if they may be interacting adversely. Share your daily assessments, noting the occurrence of 3 very bad days out of the past 15, and inquire about evaluating and managing these occurrences. Mention your participation in weekly Neurological Physiotherapy sessions, where your inability to perform certain exercises due to freezing episodes has been labeled as “typical Parkinson’s.” Express both your satisfaction and frustration with this experience.

1 Like

Good morning kevin498 … Thank you for your thoughtful reply. My worry was that I over emphasise my current issues & side effects & get my Parkinson’s nurse to change my medication which I think would be a mistake for me.

I do not think that I know whether it is Parkinson’s or Neuropathy that causes my mobility problems & how much my arthritis is in play. Sitting down on a hard chair seems to adversely effects me & standing still for more than a couple of minutes causes me to freeze.

Thanks again.
Best wishes

It is 32 days since I started marking my day out of 10.
From the scores in my diary I can see that I have had …
6 Bad days, 7 Ok sort of days & 19 good days.

When I say “good day” I still have the mobility issues I have all the time, but it doesn’t bother me that much or interfere with what I am doing.

A “Bad day” is pretty terrible. I feel so bad that I would take myself to hospital but for the fact that I know it is Parkinson’s / Neuropathy induced & I will be fine in a day or two.

An “Ok day” is one where I can’t make up my mind whether I’ve had a good day or a bad day.

Best wishes