My Marks out of ten for my Day with Parkinson's

About me Introductions and personal stories
1

I’ve just just turned 70. I have Atypical Parkinson’s, Neuropathy, Atrial Fibrillation, Arthritis, High Blood Pressure & Prostate Cancer [ prostate removed] . I’m on Sinemet, Amitriptyline, Apixaban, Bisoprolol & Ramipril.

I feel very well. If I am lying in bed I feel in perfect health. I have a tiny tremor I don’t notice. My body feels great, no stiffness, no aches & no pains.

But then I get out of bed & all my troubles are immediately apparent. I have stiff leg muscles & I struggle to walk. On bad days I lurch from chair to chair grabbing hold of their backs for support.

My condition is made worse by sitting down for too long. Getting out of my car can take a long time. When I have a gait freezing attack it can take a week to get decent movement back.

Us Parky sufferers are often asked by our Medicians how we are. How are we finding our medication? How have we been since your last appointment?

Well from me they are probably not going to get the right answer. It would be very much how I am feeling today, not how I have been in the past few months, which is the answer they are after.

We all have good days, ok days & bad days. So I have decided to come up with a daily scoring system which I will put in my diary every day.

0/10 … I’m dead
1/10 … So bad I went to hospital
2/10 … So bad I could not bowl [I play indoor bowls most days].
3/10 … I was bad but I managed to bowl somehow
4/10 … Tight leg muscles but not too bad
5/10 … In between sort of day
6/10 … Fairly normal walking & bowling
7/10 … Tight leg muscles but otherwise ok
8/10 … Long walk
9/10 … Went running
10/10 . Feel perfect

By adding up my daily scores & dividing by the number of days I will come up with an average score & that is how I have been. Good idea ?

Hope the above was of some interest. I do think we should all know how we are & whether we are improving, staying stable or declining.

Steve2

1 Like
2

Hi again @steve2.
As a scientist, mathematician of many years (about the same as you) I too am inclined to make score sheets. My first wife got fed up with my despair at a failed attempt to teach: she presented an “optimism score board”. I wrote optimism entry no 1 for me: It read “I won” .
Move on 43 years.
My (now) wife and I got smashed in the face with a very sudden onset of Parkinsons. One which she sometimes forgets happened. She is the one who has to cope with the illness - I can often do no more than support her (physically and mentally). Supporting her emotionally is the hard bit.
Your score sheet is typical of some people (me included, and many others on this site) - hit the problem with a wry smile, with disdain, with the strength to say “expletive, expletive, expletive - I’m going to get on with my life” .
Sufferers and “carers” can give up if they choose. Or they can hang on. Some are lucky enough to have family or friends nearby. Some have, or so it appears, only themselves.
I try to not waffle (I fail). I try to be concise (I fail). But I do have a version of your score sheet that may help. It might not help. How will I know?
Here is my version:
1/1 : I’m here, and so are others worse or better off than me.
Keep running!
suesbestmate

3

I like your scoring system. If you score every day you can present a graph

4

Great idea S one which I will attempt to use if I can remember! My score today 7/10.

5

Good evening suesbestmate … My scores to date are 7 - 3 - 3 - 5 - 3 - 6 - 6

Simply that is …

1 very good day [7], 2 good days [6], 1 ok sort of day [5] & 3 bad days [3]

I saw a GP face to face on Saturday & he suggested / agreed with me that I double the dosage of Amitriptyline from 10mg to 20mg a day. Following the increase of dose I would say that my mobility is quite a bit better today but I’ve felt a bit zonked all day today. Is “zonked a medical word ?” Feeling a bit weird in my head shall we say.

Best wishes
Steve2

6

Hello E & keepon … I do my scoring at the end of the day to reflect the day I’ve had.

Best wishes
Steve2

7

Hi Steve2
The scores? Who assessed them? You. Someone else will have come up with totally different values for each day, as they will have witnessed different aspects and moods. The very fact that you have had a go at assessing each day gets an extra point every day,
Your tale of the GP is somewhat negative for all the obvious reasons. He sees you for a few minutes now and then. That’s not what your every day is about.
Openness and awareness and “reality” is so much more than a fillip. It’s what keeps all of us going (and I do mean everyone!).

zonked is a medical word. Medical is and English word. Look up TweedleDum and TweedleDee.: I paraphrase - a word means whatever I want it to mean.

I hope today scores 8
suesbestmate