Letters: April 2016


Best Wishes
Happy for all the couples

[“Weddings and Wheels,” February 2016]. Wishing them a lifetime of love.
Jonnie Finley
Via newmobility.com

How Can I Get on Trials?
[Re. “Epi-Stim Opens Up Pleasure Pathways for Paras and Quads,” February 2016:] I’m a T8 complete and have been for only a year and a half. I’m a 40-year-old single dad who lost my insurance after my accident. State insurance wouldn’t pay for a wheelchair let alone this procedure [epi-stim] — or physical therapy for that matter. How can I get on a list for this or any procedure?
Kurt Lutz
Via newmobility.com

The author responds: As I write this, implanting epidural stimulators at the level of SCI is in very early stages of clinical trials. Only a few people have received these implants, which are being done via the Christopher and Dana Reeve Foundation to Cure Paralysis’ “The Big Idea” project. The next goal is to implant devices into 36 more people, analyze and publish the results, and go from there. If you are interested in becoming a participant, you can sign up and get on a list of potential volunteers by going to victoryoverparalysis.org, scrolling down to the bottom of the page and clicking the red button on the left that says “Participate in Research.”

Best of luck, and please keep us posted if you are able to receive an epi-stim implant.
— Bob Vogel

Break from Spasms
Great article [“The Ejaculation Affirmation,” February 2016]. I was discussing this option with a fertility specialist who told me that many of his clients with SCI who had some version of this vibrator procedure done in his office — for in vitro fertilization purposes — reported a pleasant side effect. Their spasticity went away for 12-24 hours following ejaculation. I’m curious if anybody else has experienced this. Sure beats high doses of baclofen.
Roger Ellsworth
Berkeley, California

Spasms Complicate Collection
The Viberect has gotten the job done for me, a T6 para, with no autonomic dysreflexia complications besides flushing of the face [“The Ejaculation Affirmation”]. I was an early adopter and they sent me a new and improved model in 2014 after I pointed out the ineffectiveness of the original product. In using it for at-home artificial insemination, I’ve found the hardest part is one not often talked about — “catching” the money shot. Ejaculation causes major spasms, which make “aiming” nearly impossible. And wearing a condom decreases the likelihood of ejaculation.
Mark Demaris
Stockton, California

That Primal Feeling
I thought your information on “electro nut busting” was good [“The Ejaculation Affirmation,” February 2016]. I was one of the early posters in the thread and I am glad that it has reached so many males with SCI and has seemingly helped many achieve ejaculation. It is a huge mental aspect, especially being younger (I was 25 when injured). Not only does it help bring back that primal feeling, but it is healthy for the prostate to flush the pipes out occasionally, and it’s nice to have some time off from spasms, even if for a few hours.

It does take time to “figure yourself out.” It can be extremely frustrating when you find what works, keep with it, and then all of the sudden, it stops. Usually I just need to take some time off, give it a few weeks and then try again. The dysreflexia has gotten easier over time, but it is usually still there to some degree. I can’t speak for all relationships, but I gather from others and my own experience that your partner usually wants/needs to see it [ejaculation] happen occasionally, just so that they don’t feel any sexual guilt or greediness. I think to most women, seeing it equates to sexual gratification. And while that is somewhat true, it will never be the same as it was pre-SCI.

It would be interesting to see if down the road, centers like Shepherd introduced this in their sexuality classes.
Thomas Sessions
Charleston, South Carolina

Ali’s Broadway Success
Yay, this just makes me happy [“Ali Stroker: Bright Light on the Great White Way,” February 2016].
Jen Halbert
Via newmobility.com

MS Curve Ball
Your story of being diagnosed is so close to mine [“An Unexpected Plot Twist in My Life.” I remember being in the neurologist’s office after having an MRI for severe and chronic migraines and having her ask me, “What types of MS symptoms have you had so far?” I think my dumbfounded reply was something like, “I came in for a headache.” I am also an educator and starting to find that I can’t really handle the demands of the job very well anymore. At 40 I am hoping I will find some sort of new career path that will allow me to keep working. Five years later I am still struggling with accepting this curve ball.
Amy Renea
Via newmobility.com

Photo Contest
Thank you to Photoability and New Mobility for supporting and promoting my #disabilityconfident. In every image [“Photo Contest Finalists,” February 2016] I see the positive attitude we all have. We are all raising the standards of recognizing disabilities with pride.
Nicki Donnelly
Via newmobility.com

Ready to Go
Wild! [Motorvation: “Motorsports with Hand Controls,” February 2016]. It’s great to know a quad can race as well. Any lady racers — or should I go first?
Sue Vilchez
Via newmobility.com


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