Living Well with Parkinsons Disease

Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at Copyright 2013-20 Sheryl Jedlinski

Pee is for Parkinson’s

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. 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.

Tips for living well with embarrassing bladder control issues… just some of the “dirty little secrets” of Parkinson’s

• 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.

3 comments on “Pee is for Parkinson’s

  1. Mariya
    March 2, 2013

    How can I possibly hit the like button on this topic? I want to thanks you so much for the reminder that I am not alone. It help me when I don’t want to go on anymore. Big warm hugs to you both.

  2. Linda McDuffee Morgan
    April 12, 2014

    Just would like to mention that almost 6 months ago I had Botox injected into my bladder. It been a life changing event, for the good!
    If you’d like details don’t hesitate to contact me via FB !

  3. Karen H.
    June 22, 2014

    OMG-that happens to me all the time. Just thinking it is time to go gets things going-whether I am ready or not. I was really worried when the doctor put me on a diuretic for my Blood Pressure, but so far it hasn’t made things worse.

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This entry was posted on February 24, 2013 by in Parkinson's symptoms.

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