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Pee is for Parkinson's

Sheryl in the dressing room

I am supposed to scoop up my clothing with one hand so it doesn't touch the bathroom floor, do the machinations to create an opening in the girdle, and go to the bathroom without wetting myself and everything I'm wearing. Some things are not meant to be, and this is one of them.

Bladder control issues are among the "dirty little secrets" of Parkinson's. Following are some tips that help me live well with this embarrassing non-motor symptom of PD.

  • Wear pull-up pants with an elastic waist… no zipper, buttons, or snaps to slow us down when we're in a hurry.
  • Stay away from belts as these can fall into the toilet without warning.
  • Choose dark-colored pants to cover up accidents that may occur.
  • Wear a pad or adult diaper to contain leakage, depending on the degree of absorbency required.
  • Keep mental notes of where all the public bathrooms are in your favorite venues and get in the habit of stopping, even if you don't feel the need to go. By the time we do, it is often too late.
  • Do pelvic floor exercises to strengthen the nerves that control bladder emptying.

 

 

WPC - Montreal, Canada 2013

Real friends do not suggest Spandex(R) undergarments to friends who have Parkinson's disease… and especially not to those who live with non-motor symptoms involving loss of bladder control. Just thinking about needing to go is enough to start the flow. I often wish that our garage led directly into a powder room instead of a mud room. This would spare me my daily sprint(s) down the hallway, off loading packages and outerwear as I go. A friend compared bladder urgency to the "letting down" nursing mothers experience when thinking of their baby or hearing a baby cry.

The first time I tried one of the celebrity-endorsed girdles was for my younger son's wedding. A saleswoman knocked on the dressing room door and asked if I needed help. This was my worst shopping nightmare… a complete stranger helping me put on intimate apparel. I broke out in a cold sweat like I do when shopping for a bathing suit. With the girdle tangled around my legs, and looking like a prisoner in ankle chains, I acquiesced, taking little mincing steps towards the door. This was definitely a new low in my life with Parkinson's.

"No wonder you're having so much trouble, dear; you're doing it all wrong," the saleswoman told me, pushing her way past me into the tiny room.

How many ways are there to step into a girdle and pull it up? I wondered.

"You will appreciate the fact that you do not have to take the girdle off to go to the bathroom," she told me, embarking on a show worthy of David Copperfield. She pointed to what looked like an origami square at the bottom of the girdle and demonstrated how with two properly placed fingers she could do a cat's cradle maneuver and create an opening in the square.

Imagine me dressed for my son's wedding, shaking from Parkinson's, and plagued by the urge to go to the bathroom immediately.

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