Hylke Sieders and the search for a more personal healthcare for SCI patients

Posted by MedTech Europe on 12/12/13
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In my article in the newsletter of last August, I told you about the standard rehabilitation support I receive as outpatient of spinal cord injury (SCI), and how I have had to work for access to more personalised treatment, which has brought to where I am today. However, be that as it may, my current state of rehabilitation remains insufficient and my search for better alternatives continues. 

In many rehabilitation centres, a lot of effort is put in neurology recovery research. New research demonstrates that innovative rehabilitative treatments for individuals with spinal cord injury can lead to significant functional improvements in patients and a higher quality of life. As a result of these findings, new rehabilitation strategies have emerged, among them Locomotor Training, a gait therapy device on a treadmill that provides robot-assisted walking, and is used for the rehabilitation of people with brain and SCI, stroke and other neurological disorders. According to the Christopher Reeve Foundation, many people with SCI, regardless of how long ago they had their injury, have regained or improved their walking after receiving Locomotor Training, even stating one example of a person’s ability now with approximately the same SCI level. There are research programs and clinics in Germany, Canada, Switzerland, and the United States. So why aren’t there more centres for Locomotor Traning in other European countries? 

Recently, I had the opportunity to have a gait therapy session. Not in my own local centre, as due to protocol my specialist would not let me. I was instead offered the opportunity by a specialist from another centre. This was my first experience as a medical tourist!

First of all, I needed to check for osteoporosis to be eligible for the therapy.  The results surprised the specialists; I was not affected by osteoporosis at all, something highly uncommon for people who have been in a wheelchair for 4.5 years. I was then cleared to receive the opportunity for a gait therapy session.

For the first time in 3 years I was standing in an upright position. The last time I could still walk was 4 years ago. 

What an amazing feeling to be able to stand again, to look down, and see myself walking in the mirror. Thankfully I was not feeling sick or getting dizzy at all. Obviously, I got emotional on the way back going home. I can’t wait for the remaining two sessions, and to see my 6 year old son and my wife’s faces when I am standing upright, and walking. I was hospitalised when my son was one year and half old so he hasn’t seen me standing upright, ever. As I’m 1.97 meters tall, he will probably think I’m a giant…

If I can’t get into agreement with my specialist to increase the number of sessions, I will need to look at facilities in Germany, Canada, Switzerland, and the United States. My health insurer probably wouldn’t be too eager to cover the accompanying costs.

While I am grateful to the specialist that provided this opportunity to me, the process to receive the treatments I would like to receive and that are available remains complicated. Being stubborn and having perseverance seem to be two good personal characteristics to continue in my challenge.

Another therapy I am looking into is called Brucker Biofeedback, a technique that measures the nervous signals sent between the brain and the body. With the aid of electrodes, subtle muscle movements are made visual or audible for the patient. This would help me optimize and strengthen my body movements and daily life functions. More specifically, it could help me train my triceps, the muscles in my stomach, and hopefully any additional fingers. The therapy is only currently available in Germany as well as the Dutch Caribbean as far as I know, so it will probably be a challenge for me to have access to this therapy.

Finally, I would like you to reach out to me if you have any suggestions on therapies or products that might be of interest to me, fellow SCI people, or to my family in order. I would like you to know that my wife and I just a baby! Hence all, even minimal, enhancements could have a significant effect in not only my own life, but also my family’s.

-Hylke Sieders, father, avid sports fan and survivor

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