how do i feel in my off time

Off time in Parkinson’s is when your medications are not working optimally and you experience more symptoms. Although not everyone with PD experiences it, most of us overtime will.

I read a recent post in Parkinson’s News Today by Dr. C, and in it he describes his off time. What I found so interesting is that he breaks it down into four phases, with each phase described in specific detail. He is really present in what he is feeling and has found strategies to help him work through it.

Up until I read his article, I handled my off time completely the opposite. I tried to ignore it or push through it, thinking that focusing on it would just place more importance on it than I wanted. I used “feeling wonky” as my catch all term for most of my motor and non motor symptom off time. But after I read the column I can see the value of digging deeper into it. I practice mindfulness as part of my morning routine where I either meditate or sit and do nothing but just think (which is sort of a meditation but different). It’s basically trying to stay present, sit with my feelings, with no distractions or judgements.

So I decided to try Dr. C’s approach and see if I could stop and focus during my off time and describe it in writing. I tried for several days and I didn’t get very far. I basically wrote, “stronger internal and external tremor, brain fogginess, inability to concentrate, and body weakness”. It was a lot harder than I thought trying to parse out each feeling. It’s such a jumble of things happening at once. But just writing out that short sentence was helpful to me in understanding it a bit better, and by understanding it better, I can start trying things that if not alleviate them, at least deal with it better.

I think of it similar to how people have dealt with pain management or panic attacks. To not try to run from it, but to sit with it. It’s definitely an “aha moment”.

Have you ever seen or been the parent who tells their little child who is crying, gasping for breath and can’t string a sentence together, “use your words”. Well I’m going to try and use my words and continue practicing awareness during my off times, and describe them writing. Is this something that you’ve tried and had any success with?