In my twenties I spent one summer hitch-hiking around Kenya with a friend and picking various Swahili phrases that have stayed with me ever since. One of these I would see on the tarmac road approaching a junction: ‘pole-pole’, meaning slowly-slowly. Slowly-slowly is what I say to people when they ask if I need help when I am walking.
Yesterday I was up at the surgery trying to sort out a follow-up neurology appointment at my local hospital. They had given me a follow-up appointment letter then I got another letter saying it had been rescheduled & giving me a new date. However the date of the original follow up in the second letter was not the one I had been given in the first letter. However I assumed this was a small administrative error and put the new date in my diary. Then a year later, straight after the original date I got a third letter saying because I had failed to attend my appointment I had been discharged from the clinic and no further appointments haD BEEN MADE FOR ME. I had written to them but heard nothing back.
I had never met this gp before so I was trying to fill her in briefly on other kinds of nonsense. I told her how one consultant at a different hospital asked me to do the fingertap and when my worst (right) side started to slow down she told me to stop, saying, “You’re getting stressed”. In her report she wrote, “I did not find bradykinesia (a decremental response) on finger taps…today.”
Another consultant instructed me to do the hand opening and closing “slowly”. Even slowly I struggled to do this with my right hand. I remember getting exasperated and blurting out “That’s akinesia, are you going to acknowledge that?” Months later after much chasing I got his report. It mentioned “slow movements of the fingers” but the word bradykinesia did not appear nor did the fact that I had done the foot tapping and the same thing had happened – much slower on the right.
He gave his impression, “I found her case very difficult to diagnose, I got the impression that she was anxious to confirm her diagnosis of Parkinson’s disease or others.I gave him (sic) my view that I did not think she had parkinson’s disease as this did not look like parkinson’s disease to me.”
The GP apologised repeatedly and said she would write a strong letter. I also wanted to see the speech therapist and the physio but wasn’t “allowed” recently. Despite the speech therapist telling me she would see me every 6 months as she does for all her Parkinson’s patients. And one of the last times I saw the physio she said, “How long have you had your Parkinson’s diagnosis?” before I had said a word.
MDS-UPDRS 2008 Part III: Motor Examination
3.4 FINGER TAPPING Instructions to examiner: Each hand is tested separately. Demonstrate the task, but do not continue to perform the task while the patient is being tested.
Instruct the patient to tap the index finger on the thumb 10 times as quickly AND as big as possible.
Rate each side separately, evaluating speed, amplitude, hesitations, halts and decrementing amplitude.
0: Normal: No problems.
1: Slight: Any of the following:
a) the regular rhythm is broken with one or two interruptions or hesitations of the tapping movement;
b) slight slowing;
c) the amplitude decrements near the end of the 10 taps.
2: Mild: Any of the following:
a) 3 to 5 interruptions during tapping;
b) mild slowing;
c) the amplitude decrements midway in the 10-tap sequence.
3: Moderate: Any of the following:
a) more than 5 interruptions during tapping or at least one longer arrest (freeze) in ongoing movement;
b) moderate slowing;
c) the amplitude decrements starting after the 1st tap.
4: Severe: Cannot or can only barely perform the task because of slowing, interruptions or decrements
3.5 HAND MOVEMENTS Have the patient open the hand 10 times as fully AND as quickly as possible.
3.6 PRONATION-SUPINATION MOVEMENTS OF Hands
3.7 TOE TAPPING
3.8 LEG AGILITY
3.9 ARISING FROM CHAIR
3.14 GLOBAL SPONTANEITY OF MOVEMENT (BODY BRADYKINESIA)