From pain to joy: I’m living my best life with Parkinson’s

Twenty years ago, I developed frozen shoulders. Yes, plural. Over the course of a year, both of my shoulders locked up, causing me to gasp in pain when doing the simplest tasks — brushing my teeth, putting on deodorant, combing my hair. It took months of physiotherapy, and then finally a cortisone shot to end the pain.

Ah, the cortisone shot! To this day, I’m not certain what happened, but something went horribly wrong. I left the doctor’s office right after I got the injection. By the time I reached my car, I knew something was up, because I felt a tremendous pressure at the back of my head, and it was hard to breathe. When it felt better to keep my eyes closed than open, I thought I should call my husband, because, well, I thought death was imminent. Remember, this was 20 years ago, and I didn’t have a cellphone!

I managed to get back into the building, found a pay phone, called home, left a message that (according to my husband) was completely garbled, and then thought the best thing to do would be to lie down on a nearby bench and go to sleep.

So there I was, eyes closed, lying on a bench in a public space. A woman came along and asked me if everything was OK. No, things were not OK! This compassionate soul brought me to the doctor’s office and got me the help I needed. Little did I know that frozen shoulder can be a precursor to Parkinson’s disease.

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Where it went

Twelve years later, after noticing a small tremor in my left hand, I went to my family doctor. I was concerned that I had Parkinson’s. My doctor said, “Christine! You do not have Parkinson’s disease! Come back in four months if it gets worse.” Four months later, her eyes pretty much bugged out of her head when I went back, because yes, things had gotten much worse. She sent me to a neurologist who quickly confirmed my worst fear: Yes, I had Parkinson’s.

Being a proactive person, I started exercising vigorously, joined Rock Steady Boxing, and did whatever I could to slow the disease’s progression. I even quit my job to reduce the stress. But even though I did everything right, the disease still progressed. Finally, I asked my neurologist about deep brain stimulation (DBS). In August 2021, I had the surgery, just six months after I’d inquired about it.

Where it is now

It’s hard to describe the difference DBS has made in my life, but I’ll do my best. There are lots of little changes: I can hold a cup of tea without spilling it, chop vegetables without dropping my knife, and type up an email without pressing dozens of keys that I don’t want.

There are many big changes, as well: I can speak in public now without fear of having violent tremors, and I can drive myself anywhere I want to go without worrying that I’ll tremor too much to hold the wheel. Not long ago, I took a painting course with my daughter, and although I’m no Van Gogh, I could hold onto the paintbrush and keep it steady!

All of these positive changes, paired with the opportunity to write this column, give me a tremendous sense of joy and confidence that I haven’t felt for years. I believe that I’m living my best life!

This column’s purpose is not only to share my stories, but also to empower others who have Parkinson’s disease to live their best life!

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.