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Patient view: Living with PTSD

Serena Kelly and her husband
Please note this post contains difficult and detailed accounts of the patient’s experiences and circumstances leading to her diagnosis of post-traumatic stress disorder, including sexual assault and the death of a loved one.

For decades Serena Kelly has been suffering from the effects of post-traumatic stress disorder (PTSD). She is the first person in Canada to participate in a trial investigating deep brain stimulation (DBS) as a possible treatment for treatment-resistant PTSD.

Serena shares how living with PTSD has affected her life and why she decided to take part in this groundbreaking study.

Update - June 2019: See how Serena is doing, four months later

What lead to your PTSD?

At the age of twelve I was sexually assaulted by a group of classmates as I was walking home from school. In the nine years that followed that incident I was sexually assaulted an additional six times.

After the last sexual assault, at age 21, I was in an extremely fragile emotional state and fell prey to a man that abused me in every way imaginable. It took me four years to find the strength and courage to finally leave him, only to have him harass and (cyber) stalk my children and I for an additional twenty years.

In 2017, my PTSD worsened exponentially with the sudden death of my youngest daughter, who was killed when the motorcycle she had been a passenger on collided with a car. She had been living in another province at the time and we received the call from police telling us she had died at the scene. In the hours and days after her death we were bombarded with people sharing reports and images from news outlets on social media. I was exposed not only to images of the damaged motorcycle and collision scene, but also of her lifeless body on the ground covered with a tarp. Those images still haunt me. I lost her in such a horrific way, and it replays in my mind over and over and over again.

How has PTSD impacted you?

Living with PTSD is like a never-ending nightmare. Intrusive thoughts and images haunt me while I’m sleeping and while I’m awake. It feels like there is danger lurking around every corner.

I am constantly scanning my environment for threats to my safety. I obsessively check to make sure that my house and car are secure. I live in an almost persistent state of fear, anxiety, paranoia and hyper-vigilance.

I am no longer able to drive alone. The sight and sound of sport-bike motorcycles (“crotch-rockets”) is one of my biggest triggers since my daughter’s death. It leads to a “freeze” response, followed by shaking, sweating, hyperventilating, tightness in my chest and an emotional breakdown. Just the thought of going out causes intense fear and anxiety and there have been weeks at a time where I have not been able to leave my house at all.

Not being able to drive alone creates many challenges – most notably is the inability to work or return to school. I have also had to cancel and reschedule appointments, get groceries and prescriptions picked up for me, and it has significantly impacted my ability to visit with my children, grandchildren and other family members as often as I would like.

Trying PTSD Treatments

I have been in therapy since the first sexual assault at age 12 and worked with various social workers, psychologists and psychiatrists over the years. I have also tried numerous medications for the treatment of my PTSD, none of which have been effective.

I have done cognitive processing therapy (CPT), emotionally focused therapy (EFT) and briefly tried eye movement desensitization and reprocessing (EMDR).

Therapy has helped me gain insight into how these traumas have impacted me, why I react the way I do, how to frame things differently and challenge the cognitive distortions that are at play with the PTSD. Therapy has helped me to become more self-aware.

What it hasn’t done, however, is prevent triggers, flashbacks or intrusive thoughts from occurring; nor has it helped to alleviate my persistent depression. It is incredibly painful and frustrating to have all of this knowledge and insight, yet be completely unable to control the automatic responses triggered by the PTSD. 

Why are you participating in this study investigating the safety of DBS for treatment-resistant PTSD?

Initially, I was desperate to find relief. The severity of my symptoms, and the profound impact PTSD has on my day-to-day life, has meant that I am merely surviving – just trying to get through each day.

I had heard about DBS treating Parkinson’s disease and had done a module on it when I was in college. I found it fascinating at the time. When I heard that it was being used to try and treat depression, OCD, and potentially PTSD I was both intrigued and excited.

Once I learned even more about the procedure, the device and the area of the brain being targeted it fascinated me even more and I just knew this was something I wanted to be a part of. I’ve seen the procedure done and I feel it’s going to be safe. My biggest fear, I think, is it not working, but if there is even the slightest chance that I can find a better quality of life with this procedure, I feel it’s worth trying.

I have always been fascinated and deeply curious about the inner workings of the human mind, so being given the opportunity to participate and contribute to future understanding and potential treatments is an honour and a privilege.

What is your hope in participating in this trial?

I hope that DBS will be the treatment that finally works for me. I hope this study is successful, and that DBS can be used in the future to treat others like me, who have not found relief and healing by any other means.

How amazing would that be to give people who have treatment-resistant PTSD their lives back!

I know that this may be another treatment that doesn’t work for me, but I hope that by being a part of this trial, by sharing my story and experience, more awareness can be raised about PTSD, its impacts, the treatment options available and the research that is being done.

PTSD is very difficult to live with. I want very much to live and enjoy life, but it can get hard when living is like this. Some days it feels so challenging to keep going – and then I look at my three surviving children and my eight grandchildren, and I feel the love, support and understanding of my husband and the rest of my family and I hang on and I keep fighting.

Being a part of this trial is part of that fight!

Update – June 2019:

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