Parkinson's is a strange disease. Just when you think it has stabilised, it surprises you with a new symptom.
In no particular order the main symptoms I’ve had to date are:
1) Stiffness in shoulder, arm and leg (rigidity)
2) Slowness of movement (called bradykinesia)
3) Difficulty with fine motor control (writing, typing etc.)
4) Tremor
5) Disturbed sleep
6) Fatigue
7) Constipation
8) Loss of sense of smell
9) Vision problems
10) Expressionless face
11) Involuntary jerky movements (sometimes called dyskinesia)
I had the dubious privilege of adding four more items to this list in recent weeks:
12) Dry throat at night
13) Pins and needles
14) Dry, itchy skin
15) Soft voice
To the above lists, I
am tempted to add another item: generally
feeling a bit crap, but I suppose this is covered by fatigue.
The movement symptoms are controlled quite well by the medication, so that, whilst I am aware of it, for the most part other people don’t notice I have Parkinson’s.
My mother and I enjoy periodically comparing notes about our latest symptoms. (This is not exactly wallowing in shared pity; I would say it’s more driven by intellectual curiosity.) Although the progression of the disease is very similar for both of us, there are some differences. For example, she hasn’t had smell or eyesight problems but gets more fatigued than me.
The other strange thing is how the symptoms ebb and flow both from day to day, but also over longer periods. Some days I have a bit of tremor and other days I have nothing (see my previous post on and off). Constipation is not often a problem these days whereas my loss of sense of smell remains a constant. Sleep has improved but I usually have at least one terrible night each week and pay for it the next day.
Surprisingly, the symptom that is perhaps most noticeable to others is my gradually softening voice. I sometimes feel like I have a permanent dryness in my throat, particularly at night and I think this is closely related to the volume of my speech.
Speech problems are common in Parkinson’s, as is speech therapy to help keep the voice trained and effective.
There is a local choir that my Parkinson’s contacts talk about. It must sound horrendous, and I am not ready to embarrass myself quite that much yet.
Although I haven't yet participated in any Parkinson's activities (as much as anything because they're normally at times that don't suit a working person), gradually I am getting to know some local PWPs - "people with Parkinson's", as we often refer to ourselves. Tomorrow I have organised a lunch at a local restaurant for five PWPs who live in the neighbourhood, plus assorted spouses, and Clara and myself.
They are all older than me, but at differing stages of progression; some fairly recently diagnosed and others having lived with the disease for many years and been through brain surgery. Although we are all from different walks of life, we can draw strength from our shared bond. I feel sure our mutual support for each other will prove invaluable in the coming years as we each tread the individual paths that have been put in front of us.
I have deliberately chosen a very small Italian that is quiet on a Saturday lunchtime. One thing I have learnt is that noisy venues and PWPs don't work well together.
So I'm looking forward to a low key, relaxed lunch with my PWP friends. Just what I need to be able to listen to all their - softly spoken - good advice.
The movement symptoms are controlled quite well by the medication, so that, whilst I am aware of it, for the most part other people don’t notice I have Parkinson’s.
My mother and I enjoy periodically comparing notes about our latest symptoms. (This is not exactly wallowing in shared pity; I would say it’s more driven by intellectual curiosity.) Although the progression of the disease is very similar for both of us, there are some differences. For example, she hasn’t had smell or eyesight problems but gets more fatigued than me.
The other strange thing is how the symptoms ebb and flow both from day to day, but also over longer periods. Some days I have a bit of tremor and other days I have nothing (see my previous post on and off). Constipation is not often a problem these days whereas my loss of sense of smell remains a constant. Sleep has improved but I usually have at least one terrible night each week and pay for it the next day.
Surprisingly, the symptom that is perhaps most noticeable to others is my gradually softening voice. I sometimes feel like I have a permanent dryness in my throat, particularly at night and I think this is closely related to the volume of my speech.
Speech problems are common in Parkinson’s, as is speech therapy to help keep the voice trained and effective.
There is a local choir that my Parkinson’s contacts talk about. It must sound horrendous, and I am not ready to embarrass myself quite that much yet.
Although I haven't yet participated in any Parkinson's activities (as much as anything because they're normally at times that don't suit a working person), gradually I am getting to know some local PWPs - "people with Parkinson's", as we often refer to ourselves. Tomorrow I have organised a lunch at a local restaurant for five PWPs who live in the neighbourhood, plus assorted spouses, and Clara and myself.
They are all older than me, but at differing stages of progression; some fairly recently diagnosed and others having lived with the disease for many years and been through brain surgery. Although we are all from different walks of life, we can draw strength from our shared bond. I feel sure our mutual support for each other will prove invaluable in the coming years as we each tread the individual paths that have been put in front of us.
I have deliberately chosen a very small Italian that is quiet on a Saturday lunchtime. One thing I have learnt is that noisy venues and PWPs don't work well together.
So I'm looking forward to a low key, relaxed lunch with my PWP friends. Just what I need to be able to listen to all their - softly spoken - good advice.
