Inside the O'Briens
Huntington's disease (HD) is an inherited neurodegenerative disease characterized by the progressive loss of voluntary movements with an increase in involuntary movements. This disease can show symptoms around 35 and continue on into the 40's where most are diagnosed. Symptoms commonly include chorea (jerky involuntary movements), loss of balance, falls, slurred speech, and anger outbursts. HD only affects around 37,000 Americans. There is currently no cure for HD.
If you're like me, and probably most of the population, you may have heard of this disease, but have never really known anything about it that was concrete. After reading the book, Inside the O'Briens by Lisa Genova, I have felt an unwavering empathy for those affected by this disease. It courses its way through family generations and doesn't discriminate - children, grandchildren, male, female. Each child of someone with HD has a 50% chance of inheriting the mutation, which is why it is often called a family disease. The progression of the disease normally proceeds for 10 to 20 years, but ultimately ending with death from complications of the disease (pneumonia, choking, starvation, suicide).
Inside the O'Briens main character, Joe, is diagnosed early on in the book after several incidences of anger outbursts, falls, or "twitches" he can't control. The book is viewed from Joe's and his youngest child, Katie.
When looking at this from Joe's perspective, you can actually feel his guilt and shame. He mentions his embarrassment of his symptoms and the fact HD has caused him to lose his job, but even more so he feels a heavy burden for his family and what they have to deal with. He can't stand what it is doing to his wife, the love of his life, and the fact that 2 out of 4 of his childern are gene positive (meaning they will eventually show symptoms of the disease and be diagnosed). To know he passed the disease on to 2 of his children, destroys him. He wants to be the best example possible for them, but he also has his own inner struggles with depression, blame and even thoughts of suicide.
But, when you read the book from Katie's perspective, you really see Joe make a real effort to show his children that while he is scared and saddened by the way HD is ripping through his family, his outlook on life has changed. He wants his kids to know they can, and should, live a happy life while they are symptom free. He shows them love and compassion and in return they show him the same.
This novel reveals what life with an incurable disease looks like as it tears down a family lineage. Watching Joe feel shamed and alone in the beginning somehow leads to inspiration and hope for those around him. I was constantly wondering, "as a therapist, how could I make this stage of the disease easier for him? How do I console and treat? How do I fix what is unfixable?" While I never came up with any specific treatments, I realized that giving a patient in this situation confidence is a big key - they want to be independent for as long as possible, so I would need to focus on things that matter most to them. Surrounding them with people who love them, or support them in other ways can also be a big help. And while there is no cure for the disease, having one ounce of courage can change the individual's outlook on their new, scary life ahead.
Sincerely,
The Young OTS
For more on Huntington's Disease, visit hds.org.
Also, read Inside the O'Briens -- you won't be disappointed!
In addition, here is a link to an occupational profile I created for Joe for more info!
https://docs.google.com/document/d/1pfEXsyk54LMl5BfCPGiwWKM-2I8BvCQG1BL-uGOv0J0/edit
If you're like me, and probably most of the population, you may have heard of this disease, but have never really known anything about it that was concrete. After reading the book, Inside the O'Briens by Lisa Genova, I have felt an unwavering empathy for those affected by this disease. It courses its way through family generations and doesn't discriminate - children, grandchildren, male, female. Each child of someone with HD has a 50% chance of inheriting the mutation, which is why it is often called a family disease. The progression of the disease normally proceeds for 10 to 20 years, but ultimately ending with death from complications of the disease (pneumonia, choking, starvation, suicide).
Inside the O'Briens main character, Joe, is diagnosed early on in the book after several incidences of anger outbursts, falls, or "twitches" he can't control. The book is viewed from Joe's and his youngest child, Katie.
When looking at this from Joe's perspective, you can actually feel his guilt and shame. He mentions his embarrassment of his symptoms and the fact HD has caused him to lose his job, but even more so he feels a heavy burden for his family and what they have to deal with. He can't stand what it is doing to his wife, the love of his life, and the fact that 2 out of 4 of his childern are gene positive (meaning they will eventually show symptoms of the disease and be diagnosed). To know he passed the disease on to 2 of his children, destroys him. He wants to be the best example possible for them, but he also has his own inner struggles with depression, blame and even thoughts of suicide.
But, when you read the book from Katie's perspective, you really see Joe make a real effort to show his children that while he is scared and saddened by the way HD is ripping through his family, his outlook on life has changed. He wants his kids to know they can, and should, live a happy life while they are symptom free. He shows them love and compassion and in return they show him the same.
This novel reveals what life with an incurable disease looks like as it tears down a family lineage. Watching Joe feel shamed and alone in the beginning somehow leads to inspiration and hope for those around him. I was constantly wondering, "as a therapist, how could I make this stage of the disease easier for him? How do I console and treat? How do I fix what is unfixable?" While I never came up with any specific treatments, I realized that giving a patient in this situation confidence is a big key - they want to be independent for as long as possible, so I would need to focus on things that matter most to them. Surrounding them with people who love them, or support them in other ways can also be a big help. And while there is no cure for the disease, having one ounce of courage can change the individual's outlook on their new, scary life ahead.
Sincerely,
The Young OTS
For more on Huntington's Disease, visit hds.org.
Also, read Inside the O'Briens -- you won't be disappointed!
In addition, here is a link to an occupational profile I created for Joe for more info!
https://docs.google.com/document/d/1pfEXsyk54LMl5BfCPGiwWKM-2I8BvCQG1BL-uGOv0J0/edit
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