Lived Experience with Deep Brain Stimulation


Researcher, University College London

Suzette Shahmoon is a PhD student at UCL Institute of Neurology, with a background in Psychology, she brings a wealth of experience as a researcher and therapist. Suzette has been practising cognitive hypnotherapy for over twelve years, focusing on helping individuals reconnect with themselves, others, and their environment. Motivated by personal experiences, Suzette’s research centres on the lived experiences of individuals who undergo Deep Brain Stimulation (DBS) and their caregivers. She aims to address the gap in qualitative research in this field, delving into the aspects that statistical data fails to capture. Her particular interest lies in comprehending how individuals navigate life after DBS and enhancing their well-being and happiness, which is often overlooked in the context of chronic illness. Guided by the principles of positive psychology, Suzette’s work focuses on harnessing human strengths, such as resilience, to develop an intervention program that empowers individuals to embrace their personal strengths and find positivity amidst adversity.

Does the caregiver identity phenomenon observed in Deep Brain Stimulation (DBS) extend to other therapeutic modalities or neuromodulation approaches?

Jonathan:  You mentioned in the paper about  having a remote control to turn the device on/off or adjust the stimulation strength, and many of the patients willingly delegated this control to their wives or other caregivers. Surprisingly, they didn’t want it themselves; they preferred someone else to handle it. It’s somewhat unexpected because, as you mentioned in the paper, one might intuitively think that granting someone such control over their own therapy would be empowering. However, it appears that they voluntarily relinquished it.

Suzette: This is the crucial factor that leads to such outcomes in their Parkinson’s journey. Suddenly, they are faced with an illness that profoundly diminishes their sense of empowerment. They become accustomed to receiving care and having someone there to assist them. So, when the power is handed back to them, it can be a significant and challenging step for some individuals. It may not be easy for them to take control, and they may prefer to let their partner handle it, like in my case. Personally, as a therapist, my inclination is to approach it from a perspective of providing coaching or therapy beforehand. It involves assessing readiness and working through any obstacles to reaching a point where they can regain control. However, it’s essential to recognize that what works for me may not work for others. Some couples may find comfort in their established roles, and the current arrangement may suit them. In my experience, I initially took charge of my husband’s care after he had DBS, managing the remote control constantly. But over time, I didn’t want to continue in that role. I wanted him to take responsibility for his own well-being. He is a young man, and I wanted him to regain independence and be able to venture out on his own. If he constantly relied on me to adjust his stimulation settings using the remote, then what was the purpose of the surgery? I wanted him to reclaim the sense of self he had when we got married.

How do individuals navigate the ambivalence of being a hybrid of humans and machines through Deep Brain Stimulation?

Jonathan: It’s interesting to hear your story and understand why you chose to focus on DBS in your work. I’m curious if this phenomenon you described is specific to DBS or if it applies more broadly to other therapeutic modalities or neuromodulation techniques. How common do you think these phenomena are in general?

Suzette: The concept of the burden of normality has been discussed in relation to other treatments, including the use of DBS for various clinical conditions. In my experience working with individuals with cancer and multiple sclerosis (MS), depending on the treatment and the stage of their illness, it is quite common for individuals who have been ill for a significant period to become accustomed to having support from others. Not everyone is immediately ready to remove the training wheels and regain independence after relying on that support for some time.

Jonathan: The burden of normality, as you mentioned, refers to the return of typical responsibilities, such as household chores and potentially returning to work, along with increased expectations placed on individuals.

Suzette: Certainly. I had the opportunity to interview a spouse caregiver who shared a unique perspective. He expressed that he didn’t want his wife to experience success with DBS because he had willingly sacrificed his job and personal life to become her caregiver. If she were to get better, he feared losing his identity and not knowing who he was anymore.

Do people think that they are being helped by the technology and at the same time it slightly dehumanize them?

Jonathan: In your paper, you mentioned the ambivalence individuals experience when they have a machine inside them, essentially becoming a hybrid of man and machine. This ambivalence arises from being both helped by the technology and feeling a sense of dehumanization or unease. Could you provide further insights into this aspect?

Suzette: I have personal experience with this. My husband used to say, “You know, I feel a bit like a cyborg. This part of my brain is now controlled by a machine.” While it might seem unusual, I recall speaking to another person who felt dehumanized by it. They expressed, “I don’t feel fully myself anymore.” Although it may be more of an outlier experience for women, a few individuals who have undergone Deep Brain Stimulation (DBS) have shared similar sentiments. It seems to stem from a lack of control over their own bodies, relying on machinery to assume that control. This can lead to a sense of slight dehumanization and a diminished human experience.

Jonathan: Is there a way to address this issue beyond it being a psychological dead-end or simply talking individuals out of it? Is there a potential solution or approach to help them overcome these feelings of dehumanization and lack of control?

Suzette: Reframing the perspective through open conversation plays a crucial role. For instance, consider someone who breaks their hip and undergoes a hip replacement. Although having a piece of metal in their hip may not be viewed as dehumanizing, it enables them to regain mobility. Similarly, it involves reframing the experience for individuals who feel dehumanized by DBS. Assisting them in recognizing that they are not alone in experiencing transformative changes due to modern medicine can facilitate their acceptance and adaptation.

Does the cognition contribute to a greater sense of being a hybrid of human and machine, distinguishing it from experiences with other interventions like hip replacements?

Jonathan: Do individuals who undergo hip replacements experience this phenomenon less frequently compared to those who undergo DBS? As someone who had a hip replacement due to congenital dysplasia, I never had the feeling of being like a half machine. Is there something unique about the integration with the brain and our control mechanisms that adds a special significance to these considerations?

Suzette: In therapy, we often emphasize the importance of how we explain things to ourselves. Overpersonalizing experiences can sometimes lead to a toxic view of life. By depersonalizing it, we can help individuals see things from a different perspective. For instance, in your case, having a hip replacement didn’t dehumanize you, as you understand that the brain is just one part of the body, like any other. It’s essential to view the whole body as a system rather than solely focusing on one part, shifting the mindset away from the belief that the brain defines one’s entire being.

Jonathan: In a way, they are correct. The brain holds a unique significance in shaping our identity and sense of self. Unlike other organs, if something goes wrong with the brain, a transplant wouldn’t preserve the same individual. It‘s this essential aspect of the brain that contributes to the perception that it plays a crucial role in defining who we are as individuals.

Suzette: You’re right. When it comes to DBS, we are indeed targeting specific areas of the brain, such as the Globus Pallidus Internus (GPi) or other designated regions. We’re not altering the entire brain; instead, we are stimulating a specific target within the brain. Therefore, I acknowledge your challenge and agree that in the context of DBS, we are not changing the entire brain, but rather focusing on a specific area.

Are clinicians adept at addressing sensitive issues with patients and their families, or do they often handle these conversations ineptly?

Jonathan: To what extent is our perception of these technologies influenced by social conditioning? Consider heart transplants as an example, where initial doubts gradually gave way to normalization. Are we still in the early phase of technologies like brain-computer interfacing and DBS? Will increased prevalence lead to reduced thoughts of dehumanization?

Suzette: The acceptance of these technologies varies depending on the cultural background of individuals. Some cultures may struggle longer than others due to their beliefs and values. For instance, I spoke with someone of Asian descent whose mother was diagnosed with Parkinson’s. In their culture, illness was seen as a negative aspect, making it challenging to accept medication or any form of assistance. Introducing the idea of DBS surgery would be particularly difficult in that cultural context. A cultural divide exists, and it seems that more Westernized societies are generally more open to accepting such advancements. Access to literature and quality healthcare also plays a role, as it allows individuals to ask questions, learn about the DBS journey, and integrate that knowledge into their understanding of medicine. Conversely, in cultures where access is limited and there are strong beliefs that view illness as a divine act not to be interfered with, acceptance becomes harder.

Jonathan: Do our current approaches as clinicians adequately address the subtleties and varying circumstances, including cultural, social, and individual factors, when discussing these issues with patients and their families? Or do you believe that clinicians often handle these conversations in a clumsy or insensitive manner?

Suzette: Firstly, it is unclear how many individuals from minority backgrounds have equal access to treatments like DBS, or if they even desire access. However, based on my conversations with clinicians, most are highly sensitive to the cultural backgrounds of their patients. Nowadays, there is a growing awareness of diversity, equity, and inclusion, prompting clinicians to be more cognizant of cultural beliefs and backgrounds. If there is a need for training to better understand and address different cultural perspectives, clinicians should actively seek it. However, a more significant concern lies with those individuals who lack access and knowledge about DBS and other advanced therapies. Bridging this gap and ensuring information reaches those who need it is a crucial issue.

This is the highlight of the interview. If you like to explore more, please visit our YouTube Channel.