Will wonder never cease?

Posted by Allen Rucker in Life After Paralysis on July 04, 2016 # Health

I may be late to the party by a year or two, or maybe a decade or two, but I’m here now and happy to report the good news. When it comes to one of the most irritating side effects of my paralysis – urinary incontinence -- I’ve finally found the solution: Botox. Half of you are saying, “Oh, come on, everybody knows about that, you bozo!” No, everyone doesn’t know about that. I, for one, didn’t know about it until a month or two ago. No one sent me the memo.

Almost everything that has enhanced my life since becoming paralyzed nineteen years ago has been some medication or procedure to prevent something bad from happening. I take pills to prevent depression and anxiety, pills to keep my blood from clotting, even a daily dose of antibiotics to stave off infection. Such preventative steps are all good, for sure, but not getting an infection only means you wake up in pretty much the same shape as when you went to bed. It’s not really an improvement in your life. It’s merely the absence of a detriment.

I have had what can be politely called leakage problems since day one and nothing has ever made the grade as a remedy. In the beginning, I took the anti-spasmodics (or anticholinergics), Detrol and Ditropan, and initially thought they were the cat’s pajamas. They seemed to work. So what that they induced high-grade cotton mouth, headaches, and intermittent bouts of light-headedness? They weren’t 100% effective, but effective enough to ease at least part of my distress. It’s only when I started having gaps in my short time memory that I got worried. I’d say things like, “Wow, this is a great elevator, wonder why I never used it before,” and my wife would reply, “You’ve used it a hundred times, including two days ago.” One study reported that continual use of these drugs could result in the equivalent of ten years of cognitive aging. I don’t have all that many years of healthy cognition left and I don’t want to spend it forgetting what I ate for dinner, or whether I’d even had dinner.

The tried and true method of bladder control is what is called “timed voiding.” You go by the clock and if you’re smart, you go a lot. This works out pretty well if you like to stop what you are doing every three or four hours or wake up at three a.m. every night to avoid an accident. I hated it. Plus, it didn’t always work. My level of spasmodic recurrence was such that I would leak when logic dictated that I shouldn’t. I felt like something between a weakling and a moron.

I didn’t know until much later that a neurogenic bladder – one like mine – can have more serious consequences than just private frustration or public embarrassment. It leads to high bladder pressure which can lead to kidney damage and even renal failure.

Finally, someone suggested what I should have known about for a long time: try Botox. My urologist agreed. He first confirmed that I had “poor compliance” (i.e., I leaked), then stuck a needle up my urethra, injected thirty shots of Botox into my bladder, and said to call him in a day or two.

There was a little internal bleeding but in 48 hours that disappeared and I realized that my leaking days were over. I mean completely over. Over and done with. Eureka! I could wait hours longer than I ever imagined and still, nada. I have never tested how long my bladder would hold up, but I know it’s more than twelve. Maybe I should shoot for a record and be inducted into the Botox Hall of Fame.

I don’t know the exact statistics, but this isn’t a guaranteed outcome. It doesn’t work for everyone. Plus, it wears out after a few months. I was told I need a new injection every six months. The minute its effect wears off, I’ll be right back in Dr. Leach’s waiting room, thumbing through old National Geographics.

For me, this is major. Because of my age, I doubt seriously if I will ever be asked to join an ep-stim trial or find the exo-skeleton of my dreams so I can dance like Baryshnikov (my legs don’t straighten out, for one thing.) My hope for change rests in little things.

Or maybe not so little. You know those interminable TV ads where they tell you if you take this pill or use this product, you will feel “confident” again. Guess what? Botox does just that.

If you are in my situation, something that is a genuine, lifestyle-enhancing, psychologically boasting, constantly reaffirming physical improvement is a gift. Botox, for me, is such a gift, the most welcomed one since I began life after paralysis. And a gift is a gift, no matter late it comes.

© 2016 Allen Rucker

Purchase Allen's book:

The Best Seat in the House:
How I Woke Up One Tuesday and Was Paralyzed for Life

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.