When I was first diagnosed with Parkinson's, I happened to meet a lady several years my senior, who had already been living with Parkinson's for some years. Sitting together having a cup of tea, she was a wealth of information and good advice, but some of the symptoms were hard to imagine. When she talked of having "on" and "off" times, I couldn't really fully comprehend what this meant. Of course, now 7 years later, I understand only too well what "on" and "off" mean. It can happen at any given time, with little or no warning. For me, often it occurs in the evening hours, and is especially embarrassing if we've been invited out. Suddenly my husband will notice that I'm "off". The biggest indication is that I stop talking! Trying to explain what it's like to someone who has not experienced this, is quite difficult. If you try to imagine removing the batteries from the Energiser bunny, the bunny would simply stop, he would in all respects be turned "off"! This is more or less what happens when having an "off" time, but instead of batteries being removed, the Parkinson's medications cease to work and the ability to function just stops.
I always carry an extra half of my Dopamine tablet with me, so that if we end up staying out later than usual, (with my neurologist's approval) I take the extra half which keeps me "on" for a little longer, enabling me to enjoy the evening.
Talking with a fellow sufferer, who has become a good friend, although we don’t live nearby, we are in regular contact and both feel a great sense of support just knowing each other is there and understanding completely with little explanation what the other is going through. As I've mentioned on various occasions, I am in the unfortunate situation of living in an area where I have no access to a Parkinson's support group. Therefore my support group is made up of contacts I have made with other sufferers initially through the Internet. Without these people in my life, and you may be one of them who is reading my blog right now, I would be totally isolated, with no one who truly understands what it is like to get through each day battling Parkinson's. I would like to say a big THANK YOU for although I initially started to write a daily blog to offer comfort and empathy to others in similar circumstances, I can see that over time, I have received a great gift from you, my readers, who have unwittingly given me support in return and made me part of the Parkinson's global family.