Parkinson's On Off Syndrome

I used to have wonderful control over my body. I would tell it what to do and it would do it. Get up, make the bed, have breakfast, take a shower, clean the house, go shopping, enjoy time with friends, play ball, dance, all enjoyable and no problem. I thought I would always be healthy and just mellow down easy into a gentle old age. Parkinson’s changed that. Now PD controls my body. It says shake and I shake. It says fall back into the chair or bed and although I don’t want to I am down. I was also foolish enough to think there were only four major PD symptoms to worry about. I am six years into it now and new symptoms just keep coming. It took Pharaoh ten days and ten plagues to get the message. It would have taken less than ten seconds if God had afflicted Pharaoh with the host of Parkinson’s symptoms. He would have been shouting ENOUGH get the Israelites out of here now, pack them up, move them out, and don’t try to stop them at the Red Sea. 

Whatever symptom I have at the moment is major. They are all punishing. Two new ones are afflicting me now. On-off and freezing are the newest indignities and another way PD is taking over and taking the me out of me. I am not who I was before PD and am worried about the future me I am becoming.

On-off is a consequence of taking levodopa for a number of years. Most PWP who take a

levodopa based medication will experience on-off in time. On-off refers to alternating periods of good control (on) and poor control (off) of symptoms. Changes in symptoms are usually due to the medication (l-dopa) wearing off but fluctuations may be unpredictable and have no relationship to medication timing. On-off comes in four flavors: on, off, wearing off, and delayed on.

On-time is the feeling good time when the levodopa medication is working and controlling the PD symptoms. Off-time is when the levodopa medication is no longer working well and PD symptoms such as tremor, slowness of movement, and stiffness have returned. Some people say when you are off is how you would feel if you didn’t take meds. Others believe what you feel is a result of coming down from the meds. Others say it is a little of both and just good old PD.

Wearing off is when PWP start to feel that the improvement gained by taking their meds is gradually fading before the next scheduled dose is due. You feel like a battery that is running out of juice. Delayed on is when it is taking longer for your meds to kick in. This is more likely to happen with time release meds because there is an increased delay until enough reaches the brain so the positive effects are felt. 

Possible ways to regulate on-off are to take smaller more frequent doses of levodopa or to take larger less frequent doses. Another way is to take time release levodopa as well as your prescribed dose but these remedies don’t work for everyone. There are also new drugs that combat off cycles. One (a pill Xadago) blocks the enzyme that breaks down L-Dopa, another (an injection Apokyn) increases the level and function of dopamine. Both must be taken with a levodopa based drug. 

Levodopa, has helped many PWP live a decent life but can cause side effects. Be aware of them and don’t hesitate to talk to your doctor about problems you experience.