Tag Archives: Spinal cord injury

Guest Blogger: “Am I Still Tall?” by Jan Scheuermann

Guest post writer Jan Scheuermann posing with an exoskeleton she moved with her mind in clinical trials at the University of Pittsburgh.

I liked being tall. Sure, it was more challenging as a kid, standing out among all my classmates and towering over most of the boys. Finding clothes that fit was difficult, but it could be done. Mom insisted I not slouch, and I did not.

As soon as I turn 21, I joined the Golden Triangle Tall Club, the Pittsburgh branch of TCI (Tall Clubs International). Finally, I stood head-to-head with other tall women, who wore high heels and showed me, through example, how elegant a tall woman could be. The tall men made me feel short; they were at least 6’2”. What a novel experience!

Soon, I loved being tall. I wore high heels when I could, found sources for clothes that not only fit, but that flattered me as a tall woman. I got attention from tall men, and I dated several of them, getting a crick in my neck when I slow-danced with them, and not minding a bit.

My husband and I met through TCI. We married, had two tall children, and still attended family-friendly tall club events. I contributed occasional humorous columns to our local tall club newsletter.

When I was 36, my legs slowly stopped working. I went from standing tall to walking a bit hunched over a cane, then a walker, then finally sitting in a wheelchair. Now, at 56, I have been a quadriplegic ( due to a weird spinal disease) for the last 15 years, unable to move below my neck. Instead of holding my head high at 6 feet with no heels, I sit 4 feet tall. Or 4 feet short.

I’ve seen the world from two separate places. On my feet, I saw over crowds, knew what was in front of me on a busy sidewalk, and saw other adults face-to-face. Except short people; them, I had to look down to. That was my only choice – I couldn’t bend my knees to talk to them. That would’ve been rude.

Now, no more seeing over crowds for me. I have no idea how busy the sidewalk is in front of me. And I look other adults straight in the stomach or chest. Although I know it’s considered rude for people to bend down to talk to me, usually I wish they would. Often, I simply cannot hear them.

Of course, I preferred being tall. Understand I’m not complaining – just commenting. It is what it is. Not only have I adjusted to life as a quad, but I’m thriving. I get around in a wheelchair that I drive with my chin, and I have a wide circle of friends and family who support and love me.

But the question remains:  Am I still tall?

I still need to buy tall clothes to fit my arms. My shoes are still size 12. But I have lost all the other perks that come with being tall

I’ve decided that I am tall in length, but not in height anymore.

I cannot stand tall,so I will sit tall. I will strive to stand tall metaphorically; to stand tall in my deeds. I choose to face life with a positive attitude, to find humor in my situation, and to be there to support my children and my loved ones when they need me.

Height can be a matter of attitude. I am tall.

Jan Scheuermann made headlines around the world when she moved a robotic arm with her mind in 2012. She lives in Pittsburgh with her husband.

SCI Health Series: SCI & Your Bladder

If you ask anyone who’s paralyzed what’s the number one thing that drives them crazy about their injury, most would say their bladder. The bladder is a muscle and when you become paralyzed, this too is affected. And it’s not easy to figure this out at first. However with practice, and trial and error, finding a happy place where you can manage your bladder and live a healthy life can be done.

The level of your injury of course has a lot of sway over what kind of cath products, and the method you end up choosing. Below we’ve outlined the most important bladder tips to know for both quadriplegics and paraplegics. Feel free to add yours in the comments below.

Quadriplegic Bladder Care

There are a lot of catheterization options for quadriplegics since their independence level can vary. For quadriplegics without arm movement, they will use an indwelling catheter – either a Foley catheter (inserted into the urethra and kept in place with an inflated saline-filled balloon) or a Super Pubic catheter (a surgically-created hole in the lower abdomen that goes to the bladder, specifically made for catheter placement), that is attached to a leg bag. Combined with an automatic leg bag opener, many high-level quads can be completely independent with their bladders by pairing these two things.

Having an indwelling catheter however lends itself to longterm bladder issues, such as an increased occurrence of UTIs and it’s also been reported to cause bladder cancer after long-term use. The main thing to remember however is that no matter the kind of catheterization method you use, drink plenty of water (up to 8 cups a day). The more water you drink, the more you will flush out your bladder.

When it comes to catheter options for quadriplegics with some arm movement, many opt to get a surgery that puts a hole into their bladder that can be accessed via their bellybutton. This is called the Mitroffanoff procedure and it allows quadriplegics to no longer use a leg bag and be free of indwelling catheters (for those who cannot undress and cath themselves the “normal” way).

Paraplegic Bladder Care

For paraplegics, male or female, most end up using a straight catheter to empty their bladder by inserting it directly into their urethra. This is an easy and no-fuss (no surgery required) option, and with minimal supplies needed.

Straight cathing, even for a female paraplegic, can be done quite easily. Many women will transfer out of their wheelchairs and onto a toilet to do it in public, but many will opt to wait to do it at home. Male paras, and many lower level male quads, straight cath themselves directly in their chairs.

Tips for All

– Flushing the bladder keeps it clear of sentiment and bad bacteria. Many will irrigate their bladder with saline on a daily basis to help completely flush it out. Saline (make sure to get a generous prescription) and a 60 cc syringe is all you’ll need to flush most catheters.

– Avoid soda and alcohol. Both of these can wreak havoc on your bladder

– Healthy eating promotes good bladder health.

– Get a Cytology test of your bladder each year to stay on top of bladder cancer (this tests the sediment?

What bladder care tips do you swear by?

Learn more

Reeve Foundation Bladder Info

Bladder Management, United Spinal Association

Bladder Management Options Following Spinal Cord Injury, SCI Model System

Pressure Sore Prevention Videos

Bladder Management After a Spinal Cord Injury

Spinal Cord Injury ~ Are Your Bladder And Bowels Paralyzed?

Bowl and bladder management

Photo courtesy of Steven Jacobo