Inside the O'Briens by Lisa Genova
Lisa Genova talks about her book Inside the O’Briens.
If a test could tell you if you had a neurodegenerative disease, would you want to know? If you read the book (or saw the movie) Still Alice by Lisa Genova, I highly recommend Inside the O’Briens. Neuroscientist and author, Lisa Genova, does an incredible job of weaving together the fictional story of the O’Brien family along with facts of the reality of Huntington’s Disease (HD).
She effectively pulls us into the characters and the struggle of not only facing the reality of Joe O’Brien’s diagnosis of HD, but of identifying with the inner conflict and the searching questions of Joe’s four young adult children - “Should I be tested for Huntington’s?” “Do I even want to know if I will get the disease?” “Do I already have symptoms?” “What about my children?” “How do I support my dad in this horrific disease?” “Why did this happen to my dad?”
Huntington’s Disease
What is HD?
Huntington’s disease is an inherited disease that causes the progressive degeneration of nerve cells in the brain. HD impacts a person’s functional abilities, most often resulting in motor, cognitive, and psychiatric disorders.
Symptoms of hd
Symptoms of Huntington’s disease can develop at any time, but they typically first appear when people are in their 30s or 40s. Treatments are available to help manage the symptoms of HD, but there is no cure and no way to prevent the physical, mental, and behavioral decline of a person with HD. (For a much more thorough description of the disease and of its symptoms, check out Mayo Clinic’s website.)
music therapy and hD
Music therapy (MT) addresses the physical and emotional symptoms of Huntington’s disease. Like Parkinson’s as you can read about in a previous blog post, these same techniques apply to people who have HD. They include Patterned Sensory Enhancement, Rhythmic Auditory Stimulation, Therapeutic Singing, and Therapeutic Instrumental Music Performance. Along with addressing the physical symptoms of HD, music therapy addresses the emotional/psychosocial challenges as well. People with HD often suffer from irritability, depression, social withdrawal, suicidal ideation and/or attempts, and much more. This is evident in Joe O’Brien’s character even before he has any idea that he has the disease. His temper flares in an instant, and he becomes withdrawn and depressed. Personally, I love how his family members come together and support him in their own unique ways, helping him to cope as the symptoms heighten and increase.
Music therapy is not mentioned in this book, but it can be effective in treating symptoms of HD. Music therapists provide a variety of receptive (listening) and active (creating/playing) music interventions to address specific goals. One of my professors from Saint Mary-of-the-Woods College, Pete Meyer, shared his experiences working with people who have HD. He is a highly skilled guitar player who has taught me a lot about improvisational techniques. I learned that improvisation is an effective music therapy technique as a means for communication for someone with HD. Verbal communication becomes consistently more challenging as the disease progresses, which is why music is an effective platform to interact between client and therapist.
Receiving a Terminal Diagnosis
Have you ever been faced with a life-altering diagnosis? Or do you have a friend or family member who has experienced this scenario? Every person’s experience is unique and special to him/her, but we can identify and empathize with each other when we’ve experienced something similar. I have never personally experienced HD, but I have experienced the devastating news of a cancer diagnosis of one of my children. I can relate to the debilitating fear instilled by the hundreds of “what if” questions upon facing a family member’s terminal illness.
For me, I think the fear of my personal situation as a mom came down to one word - CONTROL (or the lack thereof). An unreasonable scenario is placed in our laps, and we fight and fight against it because we feel like everything is out of our control. We just want to know how things are going to unfold. The waiting is often worse than the actual answers.
Which leads me to another question: have you ever felt paralyzed by that fear due to loss of control? I work with patients who face this every day. Many have lost physical control, and most have lost what can be even more challenging - their autonomy and independence. Consider the tasks or events in a one-hour time period in any given day. I challenge you [right now!] to choose one hour in any given day and write down an itemized list of your tasks/events.
Stop reading! Wait! Have you written your list? Do not continue reading until your list is complete…
Jill’s schedule on August 18, 2020 from 6:00 am until 7:00 am:
1. woke up
2. got out of bed
3. got dressed
4. went for a run outside
5. took a shower
6. got dressed
7. drank my coffee while doing my hair and putting on makeup
8. read
9. checked emails on my phone
(10. later in the day…drove to see a patient)
Now look at your list (or mine if you prefer). The majority of the hospice patients that I see for music therapy are able to do one (or maybe two) things on my list: Wake up! Could you imagine if tomorrow you woke up and didn’t have the physical or cognitive capacity to live your life on your own?
Why do I bring your attention to this? Am I trying to make you feel miserable or guilty in some way? NO, I really am not. As I become more aware of the struggles that others are facing, I want to change my behavior and perspective in response. I can affect others’ days in a positive way by simply being aware of the people around me. And this can have a domino effect. No matter what others face, their lives will be enhanced by connecting with or identifying with someone else on a daily basis.
Lisa Genova puts this reality in a personal light for me. As much as I feel like I have control over my future, that is an illusion. How I choose to live each day is in my control, and I am grateful for that poignant reminder when reading Inside the O’Briens. Read it and let’s have a conversation on the book or on this topic in general; leave a comment below!
Consider watching Lisa Genova’s TED talk [see below]. Though she talks about Alzheimer’s disease and not HD, she challenges us to consider how to live in the space of challenging circumstances, which is universal to all terminal illnesses.
“Diagnosis doesn’t mean you’re dying tomorrow. Keep living.”
In this TED talk, Lisa Genova talks about Alzheimer’s disease. Though different from HD, Alzheimer’s is also a progressive disorder that causes brain cells to degenerate and die.