Inside the O'Briens

Inside the O’Briens written by Lisa Genova was a great way to illustrate the reality of Huntington’s Disease through the everyday life of a “normal” family. Huntington’s disease is an inherited neurodegenerative disease that causes you to lose control over your ability to move, and affects cognitive thinking and behavior. The disease is autosomal dominant, meaning that offspring of people with HD will have a 50/50 chance of also inheriting the disease.

In the book, Lisa Genova did a wonderful job bringing such an awful disease to life and being so raw with her words to make you feel like you were actually apart of the O’Brien family. It doesn’t affect just the person with the disease, but it truly takes a toll on the entire family. Physically, mentally, and even spiritually. Joe O’Brien, who is the strong, fearless leader of the family finds out that he has HD, everything starts to come full circle and he realizes the real reason his mother died. When he and his wife eventually tell the rest of the family, you really begin to see everyone’s true colors. Each of their real personalities begin to arise. You see the ones who live in fear of every trip, every fall, every mishap, being a symptom of HD, but at the same time, being too scared to know the truth and live with the thought that HD will kill them (Katie and Patrick). You see the ones who have no choice but to find out if they carry the gene because they are trying or have already started a family of their own and want to know if they will pass the gene down to their offspring or it will end with them (JJ). And then we see the ones like Meghan. The ones who don’t give it a second thought and agree to be tested and face the disease head on. Meghan has a positive attitude, loves where she’s at in life, and is going to live every day to the fullest and take full advantage of every opportunity she’s given while she’s still healthy enough to do what she loves: ballet.

I think it’s important to realize that with Huntington’s Disease, you never know your fate. But then again, nobody knows their fate. Not even people who are perfectly healthy. In Inside the O’Briens, we see that Katie lives in fear of the unknown of her genetic makeup, and also in fear of her future if she does have it. I think it’s even more important to realize that even without Huntington’s Disease, you don’t know your fate. It was made clear several times throughout the book that everybody is going to die. I think this was a very powerful outlook on the disease, every disease, and life in general. No matter what you have, or what you don’t have, you will die regardless.

After finishing the book and realizing the ending wasn’t exactly how I pictured the author to leave her readers, I think it’s a perfect representation of the underlying message in the book. Regardless of knowing, or not knowing, ultimately, we do know. Maybe we don’t what Katie’s genetic testing for Huntington’s Disease was, but that isn’t what matters. What matters is that she finally did something that she wanted to do and didn’t base her decision off of something she couldn’t do anything about. I would highly recommend this book and I encourage people to read it, not only to gain insight on an overlooked genetic disease, but also to raise awareness and see the underlying messages that Lisa Genova so wonderfully wrote about.

“Life is a near-death experience. Stumble around in giddy gratitude while you still can.”

– Jen Sincero

Occupational Profile

Name: Joe O’Brien

Client Report	Reason the client is seeking OT services and concerns related to engagement in occupations (may include the client’s general health status)	Client seeks OT services after being diagnosed with Huntington’s Disease. Client is concerned with abnormal behaviors such as rage, anger, chorea, balance issues, memory loss, and other symptoms that come along with HD.
	Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	Client is successful in driving, eating, self-care, sleeping and walking dog. Barriers include loss of balance/falling, dropping things, arriving to work late, frequent memory loss/remembering issues, writing unorganized/incorrect police reports
	Personal interests and values (p. S7)	Values wife, children, family, dog Yaz, friends, RedSox baseball, his job as a Boston police officer
	The client’s occupational history/life experiences	Current police officer for the Boston PD, was a witness and assisted with victims of the Boston Marathon Bombing, husband, mother died from HD, father died from prostate cancer
	Performance patterns (routines, habits, & rituals) – what are the client’s patterns of engagement in occupations and how have they changed over time? What are the client’s daily life roles? Note patterns that support and hinder occupational performance. (p. S8)	Lives on the 1st floor of a 3-story house with his wife Rosie, son Patrick, and dog Yaz. ROUTINES: wakes up, self-care, breakfast cooked by his wife, goes to work as a police officer, occasionally works overtime directing traffic outside of Fenway Park, or outside of a concert. Working long hours affect his balance from standing so much, and his knee that has been bothering him. ROLES: husband, father, police officer, friend, co-worker, crime-fighter/law-enforcer, grandfather. His forgetful mind hinders him from remembering important details, or any details at all, for writing them in his reports which are negatively affecting his job.
Context	Aspects of the client’s environments or contexts, as viewed by the client (p. S28)	Supports to Occupational Engagement:	Barriers to Occupational Engagement:
	Physical	Walks the dog, which keeps him in shape and could help to prolong symptoms of HD.	Loses his balance and is unstable and falls easily and frequently, which could be unsafe.
	Social	All of the O’Briens live in the same house, so they can help if they are needed. RedSox baseball, going to have a few beers with friends, and his new grandson provide distraction from recent diagnosis of HD.	Recent persuasion of quitting job as a Boston police officer increases stress and gives him more time to think of the disease he has and hinders him from interacting with people in the community at work.
	Cultural	Is Catholic, but quit going to church several years ago, but has recently started walking to church after services to pray alone.	Doesn’t know if what he is believing in or praying to is helping him mentally, which increases constant fear and worry for his future. Also adds on to long list of mental issues he already inherited from HD.
	Personal	44 y/o male. Grew up in Boston. Mentally strong leader who does everything he can to provide for his family, even though it’s not much.	Worries that family will lose all hope if he shows signs of defeat from HD.
	Temporal	Is trying to positively look towards the future and see his new grandson grow up, and also trying new things and checking off experiences of his bucket list.	Sees the emotional and physical hurt on his wife’s face and body of the pain she is feeling having to adapt to new lifestyle dealing with husband and children suffering from HD, which doesn’t help his emotional state and makes him sad, when he should be finding every positive aspect in life at the moment to prolong HD progression.
	Virtual	Watching the Boston Red Sox on the television with his family allows him time and ability to create memories together and bond over something they love.	Sometimes the remote is not near his chair, and he struggles to get up without falling if he is at home alone. Also, by getting up to get the remote, he is putting himself in danger of falling and hurting himself.
Client Goals	Client’s priorities and desired target outcomes (consider occupational performance – improvement and enhancement, prevention, participation, role competence, health & wellness, quality of life, well-being, and/or occupational justice) (p. S34)	Be able to prolong progression and symptoms of Huntington’s Disease and spend more time with family and watch children and grandchildren grow up without having HD. Client wants to be able to button and unbutton clothes without issues, walk without falling, and do everyday tasks without being stared at or judged by community.

Genova, L. (2015). Inside the O'Briens. New York City, NY: Gallery Books. 

Jarrod's Second Life

 I watched a video called "Jarrod's Second Life" about a 15 year old boy named Jarrod who collapsed from a heart attack following his basketball game. I was scrolling through attitudelive.com looking for stories on TBI's and Jarrod's story caught my eye. When I saw that a 15 year old suffered a heart attack, I was intrigued because cardiac arrest in someone this young is just not very common. An undiagnosed heart condition caused Jarrod's left artery to be lifted away from the right and become compressed, which restricted blood flow causing his heart attack.This heart attack caused him to suffer a hypoxic brain injury in the occipital lobe due to lack of oxygen to his brain for 8 minutes. When Jarrod woke up 2 weeks after his heart attack, he was confused and didn't recognize anyone around him. The reason being, his occipital lobe was damaged which affects your vision as well as your vision association areas. Not only was Jarrod unable to see, but he was unable to make sense of what he would see. 

 Jarrod is one of 6 children, so while his mom is working to help support her family, Jarrod's oldest brother Jason lives with him at the Acquired Brain Injury clinic in West Auckland working tremendously hard to learn how to walk again and relearn basic ADLs such as brushing his teeth and doing self-care activities. One thing that has held him back some is having to maintain a lower heart rate. His heart rate has to stay below 150 in order to avoid having another heart attack. The one thing Jarrod wants to be able to do again more than anything is play basketball and hopefully move to America one day and play in the NBA. Of course, those are long-term goals, but playing basketball is something that his occupational therapist works with him on. The leaps and bounds in Jarrod's recovery makes me excited to one day be able to see these types of success stories first hand. Obviously not everyone is lucky enough to recover as well as Jarrod has, but being able to see someone achieve small victories like picking up his own toothbrush and turning on the faucet by himself to do something so simple that we take for granted everyday, makes it all worth it.

Jarrod has shown nothing but grit and determination throughout his recovery and is truly an inspiration. I encourage you to click the link below, grab some tissues, and be prepared to be touched by this amazing 15 year old who has defied all the odds.

https://attitudelive.com/watch/Jarrod-s-Second-Life

15 year old Jarrod Church and his mother. Retrieved from http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11749889

 References:
Jarrod's Second Life. (n.d.). Retrieved from https://attitudelive.com/watch/Jarrod-s-Second-Life 

Taking the "NextStep" In Recovery

Janne Kouri, devoted athlete from Los Angeles, California, was living the dream: house on the beach in LA, career he loved, beautiful girlfriend, phenomenal family and friends -- and in a split second, his world was turned upside down. Kouri, a former college football standout at Georgetown University, was having a fun, perfect day on the beach playing in a sand volleyball tournament with some friends when he decided to take a dip in the ocean between sets. When he dove head first into the wave just like he had done every other time, he his his head on a sandbar, broke his C5 and C6 vertebrae, and was instantly paralyzed from the neck down. He emerged from underwater on his back and floated until a nearby swimmer noticed him and carried him to shore. 

The doctor unveiled the news nobody, especially an active person like Janne, ever wants to hear: "You will never walk again so you better learn to enjoy board games." After surviving 2 months in the ICU battling pneumonia, coding twice, and having a 104-degree fever, it was time for Janne to graduate from the ICU to a rehab facility. His girlfriend spent months searching for a rehab facility that had hope in his recovery, and finally, Dr. Susan Harkema at Fraizer Rehab Institute in Louisville, Kentucky was the only one. They left everything behind to make the long haul from LA to Louisville when it dawned on Kouri, why is California the eighth largest economy in the world, has thousands of yoga studios, body building gyms, weight training facilities, and various other types of fitness related gyms, but not one that is tailored to people with disabilities? The average person who suffers a spinal cord injury only spends 36 days in a rehab facility before they are discharged because that's all insurance will pay for. Janne was fortunate enough to be able to spend a year at Fraizer Rehab and he contributes all of his success to them and their locomotor training which allowed him to regain enough muscle strength to walk without his wheelchair, and dance with his wife. 

Kouri was having so much success and enjoying being able to do the things that the doctors said he'd never be able to do again, and he didn't want to leave Fraizer. He began thinking of ways to take Fraizer back to LA and be able to help others who might not be able to afford putting their life on hold and traveling across the country to participate in life-saving rehab. In 2008, NextStep was born. NextStep Fitness is a nationally recognized non-profit organization that focuses on the physical rehabilitation of people with disabilities. Exercise is so important in the recovery process of people who suffer from spinal cord injuries, as well as countless other disabilities, but Janne Kouri and his wife didn't want money or insurance to ever be a barrier for anyone who needed rehab. 

I chose this topic because my bachelor's degree is in exercise and sport science and I spent a lot of time studying the positive effects of exercise on individuals with different diseases or disabilities. Also after starting OT school, I am intrigued by spinal cord injuries and how each individual's injury and damage is different. One thing that stood out to me after hearing Janne Kouri's story was his positive mindset after his injury as well as his motivation to help others who were suffering along with him. One thing Kouri clung to during this difficult time was a word with an important meaning from his Finnish heritage: 

"Sisu: To be courageous in the face of adversity, to be rational in the face of adversity, and to never complain in the face of adversity." 

As a future occupational therapist, it is so important to identify with each client and each of their occupations while also focusing on different types of interventions that will be pertinent in their recovery process. Not only is their recovery important, but also the ability to receive those interventions. Not everyone who suffers from a disability is financially fortunate enough to have opportunity that Janne Kouri did. Which is why I am so glad to have found the NextStep Fitness organization and is something I am strongly advocating for. Exercise is important for everyone and is easily available for those without disabilities, but as future health care providers, we have to do better at making it easily available for those who do have disabilities as well. 


I encourage you to click on the following link, Janne Kouri - Life After Paralyzation to hear his story and see the video that inspired me to write this blog post.  

References:

T. (2013, December 24). Life after paralyzation: Janne Kouri at TEDxVeniceBeach. Retrieved April  03, 2018, from https://www.youtube.com/watch?v=xCxCFjmruSg

Janne Kouri. (2017, November 09). Retrieved April 03, 2018, from https://southbay.goldenstate.is/janne-kouri/ 

Children's Play Model

 The children's play model is a MoP theory that focuses on the idea that playing is the main occupation and is very necessary for children's growth. The main idea behind this theory is that play is the primary occupation of children and healthy play is required for children and their developmental skills. Children should functionally be able to play, be creative, communicate and construct different ideas. This theory would be used in children with any disability and anywhere where they would normally play. Some things that the OT might measure or assess when using this theory would be developmental skills such as communication, organization, effectiveness, self-concept, symbolism skills or abilities, creativity, concentration, and problem solving. Three 3 terms associated with this theory are as follows:

Occupation: Everyday activities people do as individuals, in families, and with communities to occupy time and bring meaning and purpose to life

Development: The process in which someone or something grows or changes and becomes more advanced

Cognitive: The act or process of knowing; of or relating to the mental process of perception, memory, judgment, and reasoning

Health Literacy & Health Promotion

Have you ever gone to the doctor and left not understanding a word he said? He used a 10-syllable word to diagnose you and then gave you a prescription with a scribble on it and told you to take it twice daily and you left not knowing anything more than you did before you came in. It is so important to tailor your language to your clients as health professionals. Health literacy is the degree to which individuals are able to access, understand evaluate, and communicate information to engage with the demands of different health contexts in order to promote and maintain good health across the life-course. As a health provider, it is your job to make sure that your client or patient knows exactly what is wrong and exactly what medications they are taking and at what time. We sometimes think that every adult knows how to read, but as we saw in the video, that is not always the case. This could be detrimental to our client's health if we don't do our job to make sure they understand what we tell them. A good tool to use to improve your patient's health literacy are summed up in 7 steps:

1. Look for clues that your patient has a low health literacy. Some common signs are missed appointments, not taking their medication, or not completing required forms/paperwork. 

2. Use audio-visuals, pictures, or diagrams to explain things rather than medical terminology. 

3. Demonstrate. 

4. Highlight or circle important information they can take home with them. 

5. Speak slowly and use everyday language they would be able to understand. Think of it as trying to explain something to a child or like you're teaching it to someone with no background knowledge on the subject. 

6. Ask them to explain it back to you. Maybe say "So if your husband asks you what the doctor said at your appointment today, what exactly would you tell him?" This way you can be certain that they have a clear understanding. 

7. Encourage them to receive support from family, friends, online, or even a group.

These 7 steps are simple and concise and would be a great way to communicate with your clients to make sure that they understand exactly what they are supposed to be taking away from their appointment.

Another thing I learned was about empowering women with disabilities. Women with disabilities die from breast cancer at a higher rate than those without disabilities. There are many reasons for this. Multiple research studies prove that women with chronic disabling conditions are less likely to participate in breast cancer screenings due to a number of variables. Some of these barriers are lack of finances or insurance, lack of transportation, physical barriers or limitations such as being in a wheelchair, lack of knowledge, or even physiological issues such as depression or negative attitude. It is our job as women in the health care field to empower and inform all women about the dangers of neglecting health screenings, but especially those who suffer from disabilities because they tend to get overlooked. This is something that we can easily advocate and that we should make a priority because women with disabilities are no less important or no less deserving of health screenings than women without disabilities.