The Facts
PD is a progressive disease. However the extent to which it will affect any given individual varies greatly, as does the time scale. Few, if any, PWP experience all of the symptoms.
In general, over a period of time, and to widely varying degrees, PWP may experience:
It should be remembered that research is also progressing. New drugs are constantly being trialed and existing medications already provide the sufferer with a degree of control only dreamed of ten or twenty years ago. Surgery which relieves the worst of levodopa's side effects is no longer considered experimental, and advances are being made with surgery which seeks to 'cure' PD by replacing the damaged tissue of the substantia nigra. The future is bright with hope.
The PD Experience
Mental attitude
A positive mental attitude is still the best personal weapon in the war against PD, and a sense of humour is invaluable. There is a funny side to the condition though seeing it is sometimes an act of will.
As PD progresses and the medications become less effective, an 'On' / 'Off' syndrome may develop. The period of time when the medication does not work (the 'OFF' period) becomes longer with a corresponding reduction in the time when it does work (the 'ON' period).
The 'On' period is often marked by an increased instance of dyskinesia whilst dystonia can be experienced during the change from one status to the other.
During the 'Off' period the true Parkinsonian symptoms of tremor, rigidity, and slow movement are experienced. The severity of the symptoms is determined by the level to which the condition has progressed.
Being difficult
The 'On' / 'Off' syndrome is a constant source of misunderstanding. A PWP who only 10 minutes ago was able to undertake any task is now unable to put on a jacket, button a shirt or even write their name. It looks as if they are being deliberately obstructive. In truth an 'Off" PWP would be happy to be deliberately anything.
The 'Off' phase
There are many techniques for dealing with the 'Off' phase.
Space
Some PWP seem to need more personal space then most people. When that space is invaded they tend to find it even harder to do whatever it is they want to do.
Freezing and balance
A frozen PWP finds it impossible to move his feet. He also quite probably has balance problems. The well meant hand on the elbow can easily cause a fall. It definitely causes a sense of insecurity. It is a good idea to wait to be asked before trying to initiate movement by pushing or pulling (however gently).
Effective help can given by providing the PWP with something to 'step over'. Even an imaginary line 'drawn' on the floor by the helpers foot can work.
Turning over
Turning over in bed can be made easier with the aid of a side bar. Silk sheets are a great help but not exactly cheap. The budget minded will find a satin polyester 'draw sheet' nearly as efficient.