The things we don’t like talking about, part 1

First in a series.

We were careening down our gravel road at breakneck speed. “Can you go any faster?” I yelled at my husband, John. Gravel flew out from under the car tires, squirrels scattered, and my eyeballs were sweating.

We live on a peaceful farm that is accessible by a half-mile drive from the main road. We usually drive slowly and calmly, taking in the tranquil surroundings and enjoying the calmness that emanates from the landscape.

Not this time. We had to move at top speed. We were 500 meters from the house, but it might as well have been 500 miles. I wasn’t going to make it.

“Pull over! Pull over!” I frantically screamed. John stopped the car, I hopped out and ran to a hay field, dropped my pants, and relieved myself, right then and there. Thankfully, there were no witnesses.

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August 9, 2023 News by Lindsey Shapiro, PhD

Bladder problems in patients linked to distinct brain networks on MRI

Advocating for solutions

Urinary issues with Parkinson’s disease, such as urgency, are common, but knowing that doesn’t help with the actual problem.

It’s been 10 years since I was diagnosed with Parkinson’s and four years since I had deep brain stimulation. For a while now, it seems like my symptoms are progressing. Unfortunately, urinary issues are another sign that, yes, things are moving forward.

Last month, I went on holiday (shout out to Prince Edward Island) with my sister and a friend. We had an excellent plan that involved lots of hikes and walks. A few weeks before we left, I was panicking because, well, I didn’t know where the bathrooms would be, and that could be a sorry situation.

Usually when I go for a walk or run, or shopping at the farmers market, I have a plan in place. I know where all the bathrooms are located, and I plan my route accordingly. Prince Edward Island was a big mystery to me, though, and I was worried.

I was able to schedule a doctor’s appointment two weeks before we left, and I informed my doctor about what was happening. She listened carefully and prescribed a medication I already knew about. She was reluctant at first, though, and suggested a few other nonmedication options. (Adult diapers? No, thanks!) But after I advocated hard for myself, explaining why I believed medication was the best option, she wrote the prescription. It was a reminder that sometimes we need to be our own best advocates.

This medication has truly been life-changing for me. The freedom I feel is dramatic, and I wish everyone dealing with similar issues could experience it.

The lesson I learned here is that solutions exist to many problems, and sometimes advocating for yourself is the key. Sometimes the worst part is talking about what’s happening with our bodies. Why is it so hard to talk about bodily functions? When we do talk about them, and when we push for what we need, we regain a sense of control and power over our health.

In the next column, I’ll discuss my experiences with constipation.

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.