Guest Post for Sue Bohlin (and a Thank You)

A sincere thank you to author and speaker Sue Bohlin of Probe Ministries for the opportunity to share my story on her blog!  You can read the piece here: "Is God Still Doing Miracles?"  (The answer is yes.)

Merry Christmas!

Some stories of hope for this Christmas week.  

After sustaining a spinal cord injury in July, Katelynn Bechaz walked out of the Mary Free Bed Rehabilitation Hospital.

Congratulations to Aldo Amenta not only for earning his Master’s degree post-SCI, but also for walking across the stage at the graduation ceremony. 

Thank you to Paralyzed Veterans of America for their work to support veterans this Thanksgiving and Christmas.

Candice Caesar was injured while serving in the army in 1999.  A walking quadriplegic, she has reached her goal of completing 100 half-marathons in the 50 different states before her 50th birthday.  She did it within 5 years.  “‘What kept me motivated and fueled me was my faith in God,’ she said. ‘I actually was on a quest to share my testimony with one person in every state and in the last few states I actually talked to five different people and that's what kept me going.’”  Thank you to Candice for her service in the military and for sharing her testimony.

Merry Christmas!

A Recovery Story (Juan Hernandez)

"Man paralyzed in diving accident shares recovery story to give other patients hope"

Prayers and Support for Neamya

Please keep Neamya Zacharias and his family in your thoughts and prayers.  Neamya is 22 years old and recently sustained a neck injury.

 "Man Paralyzed on New Year's Day Achieves Goal of Climbing Rocky Steps"

Eric LeGrand's Coffee Shop

 A nice update on Eric LeGrand, who keeps pushing forward since his injury ten years ago.

In Case You Missed Them

Two-year-old boy walks again.  Good job, Alaric!

A blood pressure thermostat.  Depending on how it turns out, this could be a really nice device for many people.

Pray for Owen.

“[A] very merry, merry, merry, happy Christmas.”

Gary Miracle and MercyMe's "Say I Won't"

 Someone shared this story with me, and I'd like to pass it on.  It's about a man named Gary Miracle.  His name is appropriate.  Gary is a man who is seeing miracles in the midst of a very difficult situation.  Almost a year ago, he had a bad case of the flu that turned into sepsis.  He lost all four of his limbs as a result.

Instead of giving up or becoming bitter, Gary is striving to move forward and recover as much as possible.  Long before the situation that began in late December, he worked with the band MercyMe.  His friends in the music group have turned his story into a song called "Say I Won't."

One of the stanzas goes,

"I can do all things
Through Christ who gives me strength
So keep on saying I won't
And I'll keep proving you wrong."

I live the "impossible" each day.  Whatever your situation, I hope that you find encouragement in hearing Gary Miracle's story and that it leads you to consider your approach to what others call impossible.  Seek to live the impossible every day.  And ask yourself, what is your source of strength?  Is it firm and viable?  Good questions to think about as we end 2020 and begin a new year.

P.S. If you'd like to see Gary's story for yourself, you can watch MercyMe's music video here.

Update: Officer Shay Mikalonis

Please keep Officer Shay Mikalonis in your thoughts and prayers.

Devon Gales, Still Going

An update on Devon Gales, who has fought non-stop since his spinal cord injury five years ago.  He continues to make progress.  Please keep Devon in your thoughts and prayers!

Using KAFOs and a Mobility Scooter (Video)

Today's video is posted in response to a question someone asked about mobility.  When starting to use KAFOs (knee-ankle-foot orthoses) and trying to navigate a college campus, I was blessed to be provided with a mobility scooter.  This video shows how well the KAFOs worked with the scooter, even when I was relatively new to long leg braces.  Between the two, I gained an immense amount of independence.  (This clip is also featured in my video "6 Years in 6 Minutes," where you can see how the scooter works similarly outside on different surfaces.)

Scooters are not always an option if you have a spinal cord injury.  I could not have used one in the first year post-SCI due to the extensive spinal damage caused by the original accident.  As time has passed, a scooter has been a great device for me.  It's especially nice to be able to swivel the seat and not have to avoid a footrest when standing.  The scooter is easier on the wrists and shoulders than a manual wheelchair is, and can go over more terrain without trouble.  Several types of scooters give increased accessibility because they are smaller, as well.  The prices of scooters vary widely and you may find foundations or other groups able to help with the cost.  

A scooter is not an option or best choice for everybody with an injury or neurological condition.  Obviously each user who does try a scooter will find disadvantages and advantages for the individual situation.  But for those who are curious about life with KAFOs and wondering about possibilities, maybe this video will be a help.  

Note: if you have a spinal cord injury and are considering a mobility scooter, make sure to research the size and padding of the scooter's seat and foot area.

Liam Wagner's Milestone Walk

 This is an encouraging story about Liam Wagner, recovering from a spinal cord injury four years ago.  He walks three times a week with forearm crutches and is working toward walking a mile on September 12th.  Now he is hoping to use "Liam's Milestone" to raise money for adaptive equipment for others. 

Prayers for Memphis H.

Six-year-old Memphis sustained a serious cervical SCI in June.  It's good to see that she is getting support and encouragement: she can look forward to having her own service dog in a year, thanks to some South Florida Foundations and Furry Friends adoption.  Memphis has a lot of rehabilitation ahead of her.  Please keep this little girl and her family in your thoughts and prayers.

Getting KAFOs/ Long Leg Braces after Spinal Cord Injury

Today I'd like to share information about the process of getting KAFOs (Knee-Ankle-Foot Orthoses).  As usual, nothing here reflects a medical recommendation, professional opinion, or endorsement.  Note also that I receive no money or compensation for any of the products named.  I write about my own experiences and hope that they encourage others to keep moving forward.  Please seek advice from medical professionals and physical therapists. 

With that disclaimer, if you want to know more about KAFOs, where to start?  If you're like me and you have a spinal cord injury or similar neurological condition, or if you know someone who does, you may already have passed time surfing the internet.  I spent hours doing general research about leg braces.  There are a lot different types of bracing to help with therapy and functional walking.  HKAFOs (Hip-Knee-Ankle-Foot Orthoses) extend up around the hips and include a belt or back bracing, KAFOs generally run from mid-thigh down, and AFOs (Ankle-Foot Orthoses) are used for bracing below the knees.  (To learn more about types of leg braces and to see pictures, click here.)  Within these categories, realize that braces provide varying levels of support.  They may be sturdier for users with very little muscle function, or be relatively lightweight, intended to offer supplemental support for toe droop or knee buckling.  Newer models of some of these braces are mechanically assistive with springs, or feature robotic stance control that responds to muscle movement. 

Over time, I've tried HKAFOs, KAFOs, and AFOs of multiple types (thank you, Hanger!), including stance control C-braces, polypropylene plastic and carbon fiber AFOs, thermoplastic heavy-duty KAFOs, modular KAFOs (my name for the Allards Combo brand), and (H)KAFOs with a hip belt and the Up and Go bracket system for gait stabilization.  I consider myself blessed to have had the opportunity to experiment with various kinds of bracing.  Sometimes braces have to be fitted directly for the user and cannot be used on a trial basis, or are too expensive and rare for clinics to have on-hand.

To schedule an appointment with an orthotist, I had to have a doctor's written approval (a scrip).  Insurance wants the document to show that braces are medically necessary or beneficial for your health.  I talked with my insurance provider directly and asking about leg braces as authorized Durable Medical Equipment.  I would suppose that spine centers or specialty clinics devoted to SCI rehab have standard ways of doing all of this. 

The first visit at the orthotics clinic was an assessment of the injury and its specific impact.  This stage was mostly answering questions.  What muscles were functioning?  What was my level of independence at different tasks, such as sitting up or leaning over?  Did I have any walking ability?  I was using a wheelchair for mobility at the time and had a little hip function.  When my knees were blocked or locked straight, I could take small steps.  Information like this helps determine what bracing is viable.

For me, the results were almost a disappointment.  My request for braces was nearly turned down because my walking ability was very poor.  Fortunately, I had a great advocate in my orthotist.  If it hadn't been for him, the braces would never have happened.  (If you know much about SCIs, you know that opportunities can easily be shut down.  Don't be discouraged and don't give up.  Be persistent and pursue all your options.)

Fitting for leg braces was a separate appointment.  All I had to do was show up.  The casting process was fairly straightforward.  It just involved having measurements taken and being still while the clinician created a mold of my legs.

 

The molds were used to fabricate custom braces for use at home.  I picked up the braces  about a month later, approximately two weeks after the one-year anniversary of my accident.  Since we had been able to keep my body used to being upright, I did not have to go through any stages of readjusting, such as worrying about blood pressure problems or potential blood clots.  Getting used to the braces mainly meant wearing them for longer periods of time each day: an hour one day, two hours the next day, four hours the next, and so on.  By July 4, I could walk down the local trail just enough to view fireworks while standing.  It was a long and triumphant way from the hospital bed where I had been exactly a year earlier.  Well worth it!

Obviously that isn't the whole story about long leg braces.  There is much more to say about adjusting to them and using them for daily function, but I hope that these short insights will help others who are looking into leg braces.  Please contact me or leave a comment below if you have any questions!

Happy Independence Day!

Thank you to our veterans. 

Two Articles from June

From the busy month of June, there are two stories I'd like to share today.

First, the encouraging recovery of Jacques Matellus, who suffered a cervical spinal cord injury in 2019.  A year later, he is walking again, expecting far more progress ahead!  

Second, the recent injury of Officer Shay Mikalonis.  Officer Mikalonis was shot in the head June 1st and has been diagnosed as paralyzed from the neck down.  He is on a ventilator and soon to begin rehabilitation.  His injury is extremely serious; please remember him and his family.

Please keep both of these men and their families in your thoughts and prayers in the days ahead. 

Video: About KAFOs

If you'd like to know more about what knee-ankle-foot orthotics are, how they work, and how they are worn, this video is for you.  More to come about both KAFOs and AFOs.  Questions or suggestions?  Please comment below!

A Witness

"With God, all things are possible." - Matthew 19:26

Upward and Onward at the Gym

This is a great recovery story: a paralyzed New Britain man goes to the gym to work out . . . and carries his wheelchair up the stairs while walking on his own. 

Ryan Straschnitzki's Progress and Electrical Stimulation

Sharing exciting videos about an experimental spinal surgery and an ongoing recovery story.  Ryan Straschnitzki was one of the Humboldt Bronco hockey players injured in a very serious bus accident in Canada last year.  Fourteen people were injured; sixteen were killed.  Ryan sustained a spinal cord injury in the accident and has been diligently pursuing physical therapy since then.  Recently he underwent surgery in Thailand to have an epidural stimulator implanted in his spine.  The device is designed to stimulate nerves below the site of his injury.  The results are pretty incredible, as you can see from these videos: when the stimulator is turned on, he's able to move his leg, and therapists are now helping him work on taking steps.  Please keep Ryan Straschnitzki in your thoughts and prayers for continued progress.

As for the epidural stimulator technology, it's been in the news multiple times in the last few years.  I thought readers might be curious to know more about what it entails.  I am not a medical doctor and have not tried this technology, but according to reports, the internal stimulation process goes something like this: surgeons place a device called an implantable pulse generator (IPG) in the user's back or elsewhere in the body, and connect that device to electrodes put on the tissue around the spinal cord.  They can program electrical currents sending signals to the IPG and, from there, to the electrodes.  "The idea, in very basic terms, is to stimulate neurons" when the electrical stimulation is activated, as reported by a CBC News article (see here for the complete article).  If you're interested in learning more, Wings for Life's site features more details and an info graphic.

There is a non-invasive version of electrical stimulation that has also seen some amazing results.  This technique, known as transcutaneous stimulation, involves placing the electrodes on the skin of the user's lower back and then activating the electrodes with external electrical stimulation.  An NIH news release notes that by the end of one study, the users "were able to move their legs with no stimulation at all and their range of movement was — on average — the same as when they were moving while receiving stimulation."  (Click here to read the full 2015 NIH release.)

All in all, these strategies have the goal of reactivating dormant nerve pathways or creating new ones altogether.  Life-changing outcomes.

NB: For more, you can read my older posts on related studies happening at the University of Kentucky: September 2018, January 2018, and November 2017.  Thanks to Susan Harkema and Claudia Angeli for their work in Louisville!