Learning to accept my limitations has increased my freedom!

At the first sight of a slight tremor in my left pinky finger, I was fascinated. I would often show people like it was something funny! Sort of like tricks that you could do when you were a kid (ie. touching your tongue to your nose) and saying, ‘Look what I can do!”

When that tremor slowly spread its way through my fingers and up my arm, it quickly became something that I tried desperately to hide. If I was making a presentation, I would hold that arm behind my back. If I was in a meeting, I would sit on that hand to cover it up. I would often clasp my hands together and dig my thumb into the palm of my left hand to try to gain some control as though causing pain would trick my brain into sending a different response. Trying to hide the tremor became harder. And it seemed the more I was aware of it, the harder it was to control.

For those of you without a tremor, it can be hard to understand. But if you’ve ever participated in a sport that required you to hold a position (ie. weight lifting, yoga, rock-climbing etc.) then you might have experienced a tremor-like feeling. When rock climbing, we called it ‘sewing machine leg’ – your leg would shake involuntarily when you were trying to reach for your next hold.

Recently I started doing Spin classes (group cycling classes on stationary bicycles). This is a great workout for me as it is high intensity, with no risk of falling off the bike! During my last class, we were climbing up a steady hill and working hard. The instructor shouted out at us to ‘embrace the shake’ in our leg muscles as the climb got slower and more difficult.

I smiled.

Great advice.

Trying to hide something that can’t be hidden is useless.

Embrace the shake.

Ted Talk: Embrace the Shake

“As much as you can in your life, say YES.” Mary Carillo

A friend texted me to get together for coffee this morning.  I read the message and instantly cringed and said ‘no’ out loud. Not today, I thought. I replied to her that today didn’t work, but Wednesday would be a good day. Yes, Wednesday. We could go snowshoeing. Yes, this is a great idea…everything will be better on Wednesday…until Wednesday rolls around and I will still not want to go.

Don’t get me wrong, I love seeing my friends and when I’m with them they make me happy. But something has changed lately with my ability/desire to put myself out there.

I consider this behaviour to be my latest developing symptom/side effect of Parkinson’s Disease. I’m not really sure what to call it; but I know that it is real and it is progressing just like my other PD symptoms.

Let’s call it withdrawal.

More and more I find myself wanting to withdraw from social situations, events, and commitments. This is an unusual mindset for me as I used to enjoy having a schedule filled with gatherings both large and small. However, this past holiday season, I found myself opting to stay in more often. Refusing rather than accepting invitations became the norm.

And my reasons for withdrawal are not so easily defined. Perhaps there is a neurological connection or a dopamine issue that contributes to withdrawal in people with Parkinson’s but I will leave that discussion to the medical professionals.

I believe this is a ‘me-thing.’ Therefore I have to look inward to get at the root of my withdrawal.  

Have I become increasingly aware of people watching me?

Am I concerned that people think I’ve had too much to drink because of changes to my gait and my speech?

Am I stressed at trying not to shake, not to slur my words, not to lose my balance, not to appear stiff, and to purposefully make my face smile?

Is it becoming increasingly difficult to pretend that I’m ok?

Yes.

Withdrawing and staying home is so much less complicated and significantly more comfortable than going out.

If withdrawal is a side effect of Parkinson’s Disease, then I need to treat it as such. There are so many things that I do to manage my physical symptoms and if I fail to treat any of my symptoms, I don’t feel well.

Likewise, if I fail to address this withdrawal, I won’t feel well either. Abandoning my social activities could lead to loneliness, isolation, and depression. These are also very common side-effects of Parkinson’s disease that I do not wish to experience.

What can I do to treat withdrawal?

Go snowshoeing on Wednesday!

**Update: I went snowshoeing on Wednesday and it was wonderful!

“She stood in the storm and when the wind did not blow her away, she adjusted her sails.” Elizabeth Edwards

A few months after I was diagnosed with Parkinson’s, I crashed…completely. Initially, I had taken the news rather well and felt that nothing had changed. I went about my life and my job as though I could still do it all. It was ‘all good.’

My body said otherwise.

By the time I decided it was time to see the doctor, I was physically, mentally, and emotionally exhausted. My bloodwork was crazy. Anemia, low blood pressure, irregular heartbeat, etc. made the simplest of tasks seem exhausting. I was not coping well physically or emotionally.

My doctor called it ‘Adjustment Disorder.’  This made perfect sense. It could be called Acceptance Disorder, Acknowledgement Disorder, Adherence Disorder etc. Nevertheless, I wasn’t doing well at any of those things. I had developed a chronic, neurodegenerative disease for which there is no cure and no treatment to slow the progression. Yet, I expected my life to continue as though everything was normal. (As I mentioned in The Telling, I tried to downplay and make light of PD…not the best idea!)

My doctor put me on a medical leave of absence from work. I used this time to adjust. Not easy. Eventually, I practiced some much-needed self-care and I began to gather my team of professionals to help me deal with the many facets of this disease.

It took time, four months to be exact, to build my system back up to working order, and even then I was only able to return to work for half days.

I think I will always have Adjustment Disorder.  But I think I have learned to listen to my body and recognize when I need to give myself a break.

To learn more about Adjustment Disorder, click here: Mayo Clinic Adjustment Disorder