I can have a big smile on my face, feeling totally good (and maybe in these moments have a little bit of denial about my condition – because I feel so darn good).
Then….CLICK! It happens! What happens?
Somebody turned OFF my normal “switch”!
It is kind of like someone turning off the lights when you are in the middle of an important project!
I can be walking and maybe stop, and then – CLICK – can’t hardly get started walking, or when I do start – I am back to a limp or hobble at best.
I can go to get out of a chair, and my legs feel stiff and it feels as if someone had put crazy glue on the bottom of my feet.
I go to reach for something and then it can’t be grasped, or it feels like my hand is loose and I can’t quite grasp it – I may even drop the object.
I can think of many more examples where I will be doing great and then suddenly go into the Parkie mode – the “off” time. At other times, the reverse can happen to where I can be doing poorly and all of the sudden it is as if my medication decided to just kick in.
They call these times “on” and “off” times. I am “on” when everything is functioning and I am “off” when things are in Parkinson mode.
Many experts on the matter say that these “on” times are when the medications are working and the “off” times are when the medications wear off. Others say the abrupt changes (sometimes very close together) are part of the illness, that adrenalin and neurochemical changes can cause fluctuations in functioning due to dopamine levels, which in turn creates times of difficulty in the brain’s ability to regulate the medication. Either way, the “off” times serve to remind me that I do have Parkinson’s Disease – and that there will be times when I will not be able to function as desired.
These “on” and “off” periods probably confuse bystanders, family, and coworkers. One minute I am able to briskly walk across the room, and a few minutes later, I have difficulty just getting out of my chair. Some probably wonder if I am faking it when I struggle to do a task after having seen me function just fine a few minutes previously.
Doctors try to work with those with Parkinson’s to adjust the medication to minimize these off times and fluctuations. For some people with Parkinson’s, there comes a time when the medication doesn’t quite take care of things. At that time, some Parkies are able to do a type of surgery called Deep Brain Stimulation – which is a treatment to improve functioning (hopefully for many years) but it is not a cure. I am not at that point yet.
No medication or treatment is perfect. I am learning to accept the “off” times. When I am “on”, I push myself to get as much done as I am able to do.