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  • Writer's pictureMollie Lombardi

Do As I Say...

I write and talk a good game. I know all about taking care of myself and how important it is to be patient and take time to heal. But I hate having to do it.

I’ve been pretty quiet on social media since the holidays. This was partially due to my scheduling a Twitter sabbatical, when I could step back and enjoy time with my friends and family, and partially due to a new round of aches and pains that cropped up in January. After bouncing back so quickly and feeling so great right after my DBS surgery, I was now having serious pain in my knee and shoulder. Although PT was helpful, it was frustrating. My therapist informed me that my brain and body needed to get reacquainted with each other. Over a six-year period, you see, my brain and body had gotten very good at hiding things from me, without me realizing it. I hadn’t wanted PD to slow me down, so my body and mind agreed to compensate in numerous tiny ways to keep me going.

After my early-January voltage adjustment (I love that I get to say things like that!), my PD was feeling very controlled and my body was starting to move more easily. Which meant I hurt like hell. If you’ve ever clenched your fist for a long time, you know how it kind of hurts for a while after you unclench it? Well, my whole body had been clenched for six years, and now moving the “right” way was causing me to hurt. And unlike the insidious compensation that had snuck up on me over six years, this was happening all at once.

It can be so frustrating to feel like you’re moving backward. It seemed like every time I went to PT, one thing got better, but something else hurt by the time I returned home. Why wasn’t I feeling better? Why wasn’t it working? What was going on?

I happened to re-read a sentence from a blog post I had written about the day my implants were first turned on:

When I have dyskinesias, my movements typically consist of chewing the inside of my cheeks, puffing up my cheeks and blowing air out of the side of my mouth, flapping my arms uncontrollably over my head, and my neck wanting to turn violently to the side.

And then I realized how far I’d come. I haven’t chewed on my cheeks, or puffed air, or flapped my arms in three months. Since my surgery, I haven’t bottomed out and crashed even once due to the timing of my medication. And as for that, I’m on about 10% of the daily medication I had taken before surgery.

It’s so easy to get impatient with recovery. There are always setbacks. But I have to remind myself how really bad I had felt last year. I’m a new person now: I can sleep, my speech is clearer, I have energy, and I no longer have dyskinesias. And that makes me thrilled that the spring Analyst season is here, and once again I can get back out on the road and see everybody. I’m not perfect. My knee and shoulder still hurt, and I still have to be patient. But I have come so far.

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