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What It Was Like To Participate in a Brain Injury Clinical Trial

February 14, 2017

For those of you who have been following my story for a while, you know I suffered a brain injury almost five years ago when I went into a medical clinic to get an x-ray of my neck and ended up fainting and hitting my head on the concrete floor. Life has not been the same for me since.

Although my brain has done a tremendous amount of healing since my accident, I still get headaches each day and I am sensitive to light and also to noise. I was told three years ago by neurologists that my healing has plateaued and I would need to get use to all of these symptoms.

I was willing to accept where I was in that moment, but I refused to give up on my continued healing. I kept moving ahead, treating myself with kindness, and I am happy to say that I have proven the experts wrong. I continued to heal greatly past the two-year post-injury mark. But, I still have further to go.

When I heard about the medical clinical trial to test the PoNS device, I was all in. It was a big sacrifice for my family to have me spend so much time away, but if it could help me, I wanted to try it. My supportive husband was completely on board to do whatever it took to help me continue to heal. So, I applied to the program.

At the start of December, I received word that I was accepted into the trial. This meant I had to pack my bags at a moment’s notice and was gone from mid December until the end of January, only returning home for a few days a week in January.

This intensive program tested an amazing gadget called the PoNS device that was featured in the bestselling book The Brain’s Way of Healing by Dr. Norman Doidge. The company that holds the patent for this device is owned by the talk show host, Montel Williams. After Montel experienced life-changing improvements from his MS symptoms when using the PoNS, he set up a company to get this device to market. The clinical trials held on it are a big part of this process. The inventors of this device claim it will have a profound impact on helping those with Parkinson’s, brain injuries, MS, strokes, and even Alzheimer’s Disease. I knew I wanted to be a part of trying out this piece of equipment and helping bring it to market as soon as possible for those in need.

When I first arrived at Concordia University, the Montreal testing site for this trial, I felt a real mix of emotions. The butterflies in my stomach came alive as I began to think about the possibility of being ‘normal’ again and also a bit of fear about the symptoms I could face through participating in this intensive trial. I had no doubt it was going to be exhausting. Could I actually stay the course and be able to physically do this?

My physiotherapist, Laura, a woman in her late twenties with brown, long hair who was born in Columbia and had made her way to Canada as a child, put my fears at ease. She told me that everything we did would be within my symptom range and she continually checked in with me throughout our time together.

The goal of the study was to see if using the PoNS device while having physiotherapy for the brain several times a day for an hour and a half each segment plus a meditation session each evening for six days a week, for a period of at least 5 weeks could improve the brain’s ability to heal over just doing the physio itself. This meant there was a real PoNS device used by some participants and a placebo PoNS device used by others. No one, not even the physiotherapists, know who has which device and we don’t find out until the study is fully wrapped up later this year.

I spent 5 weeks standing on foam pads with my eyes closed for twenty minutes, twice a day. As well as walking on a treadmill while looking different directions and then walking forwards and backwards along hallways with my eyes closed. I also trained my core like I never have before in my life. This was part of helping create greater stability and balance. I swear I must have a six-pack in there somewhere that seems to be not quite popping out thanks to all of those great French pastries!

I also found the experience of being away from my family for that long was really eye-opening for me. I was previously such an independent woman, but since the brain injury I have come to rely on my husband A LOT!

When I sat in the empty hotel room, looking out the window and seeing the Christmas lights and people walking by laughing, I realized I had lost more than just my healthy brain in the accident. I had lost a big piece of myself. In this hotel room by myself, I felt felt bored. I didn’t know what to do with myself. I actually felt helpless without my husband. I was scared to venture outside in case I fell on the ice and got hurt and no one I knew would be around to help me.

After an hour of this fretting, I pulled myself together and suited up to head out into the cold Montreal night. I walked around, looking into the store windows and ended up going to a movie. I must admit, I felt a great sense of pride sitting in that movie theatre by myself and really enjoying the show. Being okay to be with me again.

I still don’t know if I got the ‘real’ PoNS device. I did make some improvements in terms of my vestibular functioning and my vision issues have improved slightly, but I still have a way to go in terms of my healing. This trial was an important piece of the puzzle that led me to meet some amazing people I would have never had the chance to otherwise.

Would I do it again, knowing that I wouldn’t be completely healed after sacrificing this much time away from my family and business? Foresure. Not only did I walk away a little stronger due to better balance, I walked away with a piece of myself that could only come from being forced to stand on my own two feet again in the world. I may not be completely healed. But, I am very proud of myself and I know that I am a survivor.

If you or someone you know has suffered a concussion/traumatic brain injury, there is still time to participate in the study. Reasonable expenses are covered as part of this study by the U.S. Department of Defense-funded trial. Clinical trial information.  Please check with your doctor before participating.

This blog is based on an individual experience and Potential Unlimited or Carey-Ann Oestreicher will not be held liable for others experiences.

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4 Comments leave one →
  1. Jeff Griffith permalink
    April 2, 2017 1:01 pm

    Carey-Ann, I must admit i have fallen behind in my reading of your articles, but I’m glad I am catching up. Your story really is inspiring, showing how an injury can be much more than just physical, but also how you can learn to cope and get stronger both physically and emotionally. It’s impressive to hear how you are pushing yourself to improve, even in small increments, when you have been told that may not be possible. A great lesson for all us, whether or not we have an injury to deal with. All the best for your continued progress and success.

    • April 3, 2017 9:12 am

      Thanks Jeff for taking the time to share your kind words of support. I do believe what you say to be true – even if people haven’t suffered brain injuries, we all fall, and I hope my story of getting back up again will help others to do the same. All the best to you. Enjoy your beautiful life!

  2. May 10, 2017 5:54 am

    Carey-Ann, this is a wonderful detailed description of your journey to healing your acquired brain injury. I have a question regarding your participation in the PoNS study, were there medication restrictions that a participant unable to take during the study?

    Thank you and continued success in healing!

    • May 10, 2017 9:30 am

      They do have a list of qualifications you can find out more by contacting them. But, I can tell you that I was on medication during the trial. I believe the biggest thing for them around medication is that you are on the same medications for a few months before that trial that you intend to take during it so that it is not a factor in the results of the trial. Hope this helps. Take care. Carey-Ann

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