The challenge at a previous outpatient appointment was being asked to rate how I was feeling on a scale of 1 – 10.
The challenge for my most recent appointment was to quantify what percentage of the time I was troubled by the symptoms I had just been asked to describe.
Another trick question! Last time, I used up much of the consultation pondering the correct response, leaving no time to ask the questions I had carefully prepared. Not this time! I resisted the urge to check if only one symptom at a time counted, if I should multiply the score for two or more simultaneous symptoms, if I should only count those symptoms that interfered with my daily activities or include the ones I have most of the time and I’m learning to treat as my new ‘norm’. I thought for a few seconds and I suggested ‘perhaps 25% of the time.’
‘Really!’ My doctor exclaimed. ‘You have these symptoms for six hours every day?’
Definitely a trick question. ‘No, I don’t have all these symptoms for six hours a day.’
‘So not 25% of the time?’
‘No, not 25% of the time.’
‘So how much of the time do you have these symptoms?’
‘I have all of them some of the time and some of them all of the time. It varies hugely from day to day.’
‘You are not shaking now’, she said. I think it was an observation rather than an accusation but it was hard to tell.
‘No, I don’t shake all the time.’ I said, resisting the urge to explain what I felt she should already know. That many of the symptoms are less visible or indeed invisible to others. It’s not all about the shaking. The fatigue, pain, cramps, dystonia and cognitive impairment may not always be obvious to others but there is usually a combination of these going on at any given time.
‘Why do you think you are not shaking now?’ she asked.
It could be that I slept better than usual last night, or perhaps because I had snoozed in the waiting room. Perhaps it was because it was a Friday, my hormones were behaving themselves, the weather was good, I had been feeling quite relaxed or perhaps because there was a full moon. I truly hadn’t got a clue.
‘I don’t know why.’ I replied.
One of the confounding problems with symptoms of Parkinson’s is their unpredictability. This makes it difficult to live with and understandably difficult for doctors to gauge the extent of the problem. The questioning continued.
‘I’m not sure what percentage of time I’m under siege from my symptoms’, I said ‘But they have got considerably worse and more persistent. They are inconvenient, uncomfortable and are getting in the way of my doing the things I want to do. Ideally, I’d like to try and reduce the impact they are having if at all possible.’
If I was waiting for a compassionate ‘I understand. This must be difficult for you. There are a number of treatment options we can explore and a number of things that you might consider doing yourself that can make a difference. Let’s discuss a few options.’ response, then I was bitterly disappointed.
‘Do you think you have a low mood?’ she asked.
`Yes, quite possibly, none of these symptoms are enjoyable.’
‘How often do you take your medication?’
‘Every 2-3 hours’
‘How effective is it?’
‘It varies but less so recently.’
‘Do I feel my medication wearing off?’
‘Sometimes, more so than it used to.’
I feel like a belligerent child.
‘Every 2-3 hours’ she said, why not every 2.5 hours as I said last time?
Good question, she’s caught me out. With the best intention in the world remembering every 2.5 hours is quite a challenge. Life gets in the way. I don’t hear my alarm, I don’t have access to a drink, I nodded off, I’m having fun, I forget, I’m human!
I fear she is going to stamp my file with ‘must try harder’ but instead after further questioning, she said, ‘I think we’ll add another medication. If you have any side effects stop taking it immediately and get in touch.’
‘What side effects should I look out for?’ I ask. ‘Anything different’, came the reply that wrapped up my consultation.
Another consultation completed and all that was missing was empathy, compassion, effective communication, listening and understanding.
I’m grateful to be on a working group consisting of health care professionals, managers and people with Parkinson’s which is focussing on improving the patient experience. It is an opportunity to make a difference and I might just have a few suggestions.
PS Mum, don’t worry, I just needed to vent my frustration here, the normal upbeat service is to resume shortly……