F - Fluctuations, Fatigue, Future, Fear

As PD progresses it’s common to experience fluctuations also known as on/off time. I will cover the on/off phenomenon more in a later post. I experience fluctuations like this many times a day, every day. Usually I am able to control my symptoms pretty well from about an hour after I wake up in the morning and through the afternoon. When I am “on” you can’t tell I have PD. But as my meds wear off (this changes constantly but currently around 3-4hours) I feel symptoms slowly sneaking up on me. I have made strategies to manage this while at work - I usually don’t get up from my desk at this time, and try to find some simple tasks to work on that don’t require a lot of fast typing (or thinking 🤪). I have timed my next dose so that when my colleagues start getting ready to go to lunch I am back “on” so I can join them. Meal timing is also a factor as food in general and protein in particular affects the medicine uptake. So after lunch I have another 2-3 hours before I start needing more. And then I peak again at the end of the day when it’s time to deal with kids, homework and dinner. Each dose gets less effective and I am more “off” in the evening when I am most often at home anyway. These fluctuations are frustrating because you have to time your activities with your meds and I often feel like I can’t “waste” my precious on-time relaxing or doing nothing, and sometimes on-time can feel so good and liberating I can totally forget about PD and my good hours fly by until I suddenly crash while in the middle of something I end up not being able to finish. And that’s when fatigue sets in. The feeling of extreme tiredness and total lack of energy. Fear & Future With a progressive degenerative disease thoughts about the future become very different. When I first joined the PD boxing group I was scared to peek into my own future when seeing other people further along than myself. But it turned out not being scary at all. We are all so different. I have no way of knowing what my future looks like and I will never let fear decide. So while in some dark moments I can feel fear and worry I try not to give much energy to things I can’t control. 🔮🤷🏻‍♀️