Supporting communication for neurological patients with augmentative devices

Certified speech pathologist and neuromuscular electrical stimulation device practitioner, Vanessa Abraham, who has had her own experience with a rare and progressive neurological disease, supports neurological patients recovering from neurological disorders, medical trauma, and the accompanying mental health challenges.

With over 15 years of experience in schools, Abraham has worked with children to help them learn how to express their most basic needs using augmentative communication devices.

Abraham is a NeuFit practitioner – a neuromuscular re-education and rehabilitation system that uses direct current (DC) electrical stimulation through the NEUBIE device to enhance recovery, fitness, and performance, focusing on neuromuscular function.

Abraham faced her own experience with the Pharyngeal-Cervical-Brachial variant of Guillain-Barré Syndrome – a rare and progressive neurological disease – which left her unable to communicate, and would one day need to use these tools herself.

The condition left her paralysed in her arm and neck. Within one week, she went from being a mother and full-time employee to being unable to move, eat, or speak and totally dependent on others for her care and fighting for her life. Abraham was then left without speech for a month.

On her recovery journey, Abraham has navigated the physical and emotional toll of her condition; while confronting depression, isolation, uncertainty, and the psychological impact of her ICU stay, including Post-Intensive Care Syndrome (PICS).

Now she has gone through rehabilitation to reclaim her voice and her life.

Abraham speaks to NR Times about her work and her experience with Pharyngeal-Cervical-Brachial Guillain-Barré Syndrome.

 

Can you tell us about your practice and expertise?

I am a certified speech pathologist and NeuFit practitioner that focuses on healing the nervous system using direct current electrical stimulation. I went into private practice using this device to help others heal from neurological injuries because it was the only treatment modality that worked for me and I want to give that to others.

It gave me hope. I quickly became certified as a practitioner after using the device with my own personal trainer for two months.

After using the device myself, I began to wonder if it could be used to help people with neurological disorders such as Autism and attention disorders such as ADHD which I found does help.

I felt that as a speech pathologist this could help others heal from speech and communication disorders in a faster and natural way. The device helps to “wake up” the nervous system. It also works on activating the parasympathetic nervous system that is crucial in recovery I have found.

Can you tell us how you use augmentative communication devices to help children and young people with neurological conditions?

Augmentative communication devices can be low tech such as simple things like pictures to communicate or a piece of paper with letters on it to type your wants and needs on or a piece of paper that others can use to track your eye movement to understand what you want/need.

This form of communication is typically used for someone (such as myself) that was unable to speak and move their limbs to either type on an alphabet board or use higher tech forms of communication such as text to speech or an iPad with icons that can be used to communicate in longer length utterances.

I have used all forms of communication during my medical journey. I have used eye gaze when I was unable to move my arms and intubated. When I became more aware and able to move my fingers, I progressed to using an alphabet board (paper with letters on it to type) and eventually progressed to downloading a text to speech application on my phone making communication faster.

Individuals with autism, stroke or other neurological impairments often are unable to communicate due to neurological injury and this is a treatment modality for individuals (adults and kids) that are nonverbal or remain highly unintelligible in conversation.

Can you tell us about your experience contracting the Pharyngeal-Cervical-Brachial variant of Guillain-Barré Syndrome, including your experience with Post-Intensive Care Syndrome (PICS)?

There was nothing specifically that made me acquire this debilitating disease. Some contract it through certain foods or vaccines but for me it was none of the above. I simply went to sleep one night and woke up the next day feeling awful.

From that day forward my life quickly changed and I slowly began to decline each day further and further. Within one week from onset I was in the ICU unable to communicate due to being intubated and unable to move my upper body.

I was seeing double as this virus slowly took over my body leaving me speechless and unable to move, swallow food or care for myself or my child. The traumatic events in the ICU (hallucinations, anxiety from ventilator usage, the inability to advocate for myself and communicate, the deep fear over not seeing my child again, MRI machines, trying to learn to eat, talk, breathe again, narcotics, led me to having PICS.

After I left ICU I felt like I was coming back from war where I had to fight each and every day for life through immense fear. Not a single minute of the day would go by where I didn’t wonder if I would live. I was cognitively aware for most of my stay so I knew how bad off I was. I knew as an SLP that my situation and prognosis was grave.

Coming home is when profound depression set in. I didn’t want to live and often wished they would have removed my life saving machines if this is the life I was going to have (i.e. tube fed, with upper body paralysis, pain, unable to drive or work etc). I had legit PTSD and couldn’t sleep through the night without flashbacks and anxiety waking me up.

These are things I still experience. I have come to realize that others (medical professionals, therapists etc) have never heard of PICS and for me that is sad as there are ICU survivors leaving the ICU on a daily basis not receiving the help they deserve following an ICU stay. Our lives are saved but they are never the same.

Can you tell us about your own rehabilitation journey and if/how any non-pharmacological therapies supported your recovery?

Once I departed the ICU and came home from rehabilitation, I quickly tried to get myself off all medications. I knew the side effects and knew what they were doing to me and didn’t want anything to do with any of it if at all possible.

However, I knew there was a time and place for everything and weaned off gabapentin but stayed with the antidepressants because I knew that was what I needed at the time. But even those side effects were horrible.

I did everything from acupuncture, chiropractic care, cranial sacral therapy, massage, weekly IV infusions as well as everything for mental health including CBT, EMDR, CRT, and EMDR. The only thing that helped me mentally was my ICU PICS support group.

I attended PT and OT and nothing helped me progress in the way Neubie did. I quickly gave up on all outside therapies through insurance and invested in a Neubie because I knew that would be what got me closer to my goals.

Can you tell us how your experience has informed your work?

As a result of my medical experience and trauma I endured, I am more of a trauma informed therapist. I always take into consideration the patient’s mental state (depression/anxiety) as well as the caregivers.

I always encourage people to find their community of supporters whether through church, support groups or friends that understand you and where you are in your healing journey. It has made me a better therapist because I now emphasise natural healing modalities into treatments that not only heal the body but mind as well. Because healing from the mental trauma is part of the healing journey.

Do you have any future plans?

Yes! I have a LOT of plans. First, I want to continue to educate, educate, educate. I want to speak to universities, and educate the future cohort of medical professionals, those working to rehabilitate those with neurological injuries, OT/PT/Speech therapists, social workers, therapists, parents etc.

I also have plans for building a community of ICU survivors and helping them heal mentally and physically by offering retreats where I can surround them with love, encouragement and healing treatment modalities.

I also have visions of offering coursework and writing a workbook for continuing education credits to address all of the topics addressed in my book Speechless. The workbook will go alongside my book Speechless for ICU survivors to work through or professionals working with those in the ICU.

My memoir Speechless covers my entire medical journey from initial onset, to what it was like being the patient in the bed receiving a speech evaluation by a fellow speech pathologist. It discusses what my family went through and what it felt like to be a mom worried about her future and profound depression (suicidal ideation) and what got me through it.

It discusses PICS, how I was diagnosed as well as the healing journey from a neurological disability and the importance of community and supportive groups during this time.