What Does It Feel Like to Have Parkinson's?

By Tim Hague

“What’s it feel like to have Parkinson’s?” This was the gist of a conversation I was having recently with a friend whose father also has the disease. I enjoyed the conversation so much that it inspired me to make it my next blog post!

What’s it feel like to have this disease? It’s a good question on many levels with one of the most important being to help the person without Parkinson’s understand the reality of the person with Parkinson’s. The example I most often use is based on my personal experience and is simple.

You’ll need a friend for this experiment preferably two. While the three of you stand having a conversation, you will begin to tug ever so gently on the arm sleeve of the shirt or the tail of the jacket of one friend. Don’t pull so hard as to be terribly obvious but also don’t be too gentle. You want them to notice the tug but not spill the coffee they are holding.

Now, as you tug, have the three of you carry on your conversation. Just don’t stop tugging, ever. Tug, tug, tug, tug, tug, tug, tug, now tell them ‘just ignore it, it’s not that bad, carry on your conversation and pay attention.’ tug, tug, tug, tug, tug, tug, tug, tug….don’t stop, be persistent.

If you are reading this and don’t have Parkinson’s, we who do are going to give you a moment to go try this out. See you in five…….Jeopardy music playing……

What was your response? I almost always get one of two responses from people. One is frustration, they can’t stand that I’m messing with them, tug, tug, tug, tug. The second is often a genuine ‘aha!’ moment. The friend that I referenced at the beginning of this article had a heart warming ‘aha!’ experience.

It is very difficult to put in to words thus I encourage you to try this little experiment. While you do and as you stop remember that for us, your dad, friend, spouse, the tug (the tremor) never, ever stops. Yes, our meds will give brief interludes of calm where the muscles relax and the tug is silent. However, your body, your mind, your soul knows. It will come back. So while you may experience interludes of peace in your limbs, it never truly stops.

Now carry on: ‘just get over it’ (tug, tug, tug), ‘it’s not that bad is it?’ (tug, tug, tug), ‘you look fine’ (tug, tug, tug), ‘it’s just in your head’ (tug, tug, tug).

What I have described thus far is the classic early stage tremor in Parkinson’s. We’ve not discussed the rigidity or stiffness. We’ve not discussed the loss of balance or the slowness, or my personal favorite, the fatigue.

During the conversation with my friend, he made such an important and heart-warming realization. He said to me; “Maybe dad just needs me to affirm his reality.” He came to see that dad wasn’t necessarily asking to be fixed or pitied. He gained insight into the fact that while sometimes we need to be pushed, most times we just need to be encouraged. He came to realize that no matter what dad said, how he looked, or what he was doing it never stops tugging, tug, tug, tug, tug, tug, tug, tug, (does the repetitive text bug you?)

My hope is that as a person living with Parkinson’s, this little example will help you articulate your struggles to those you love. As a person who loves someone living with Parkinson’s, I trust this will help deepen your understanding of their struggle.
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