Neuro Note #3

For my third neuro note, I chose to watch The Theory of Everything.  This movie was about the life of Stephen Hawking as a young adult before and during his diagnosis with ALS, the disease commonly known as Lou Gehrig's disease.  This movie was originally a book written by Stephen Hawking's previous wife, Jane Hawking, to describe how Stephen and his family came to be who they are today. 

Many of us know of the amazingly brilliant physicist, cosmologist, and author, but if you are like me, you didn't know much or anything at all about the journey he took to become the famous figure we knew.  The Theory of Everything gives a captivating insight into everything that Stephen Hawking, Jane Hawking, his family, and friends went through as his brilliance and ALS began to share very prominent roles in his life.  

The film begins with Stephen and his friends heading to to have some drinks together.  While at this gathering, he meets Jane Wilde.  They are both undoubtedly drawn to each other, and it is very clear to see that they bring out the best in one another.  Where one may lack in some aspects of personality or talent, the other makes up for.  You can't help but find yourself rooting for their relationship with one another.  As Stephen and Jane's relationship really begins to blossom into a beautiful companionship, he also begins showing the distinct signs of ALS that we have learned about throughout our lectures.  He has trouble coordinating his hand movements when reaching for things and writing.  He has increased difficulty maintaining his balance when simply walking or going up or down stairs.  The incident that led him to discover that he had ALS was a terrible fall on Cambridge's campus where he was working toward his PhD.  He fell in the courtyard and slammed his head against the pavement more than once.  While completing many physical tests, scans, and examinations on Stephen, the doctors concluded that he undoubtedly had ALS.  

This diagnosis came as a complete shock to him, as it would to any 21-year-old.  Along with the being told he had ALS, the doctor also told him he probably only had 2 years to live.  Something he immediately asked the doctor was if his brain would be affected.  Out of all of the losses this disease would cause, Stephen just wanted to make sure his intelligence and ideas would remain the same.  After receiving this news, Stephen struggled with finding purpose.  He began trying to push away friends, Jane, and his responsibilities.  However, they all refused to budge and remained a steady support system for him. 

Stephen and Jane decided to get married so that they could take this journey together.  At the time of their marriage, Stephen had lost much of his ability to walk independently and relied on a walking cane.  He did his best not to let his difficulty walking slow him down or hold him back.  He continued his studies and finished his coursework for his PhD.  After the birth of their first child, the movie showed much more of Stephen's physical decline.  He lost the ability to speak clearly and feed himself.  He soon had to begin using a wheelchair because of the how hard and unsteady it was for him to walk on his own.  They also had to move a bed downstairs to the kitchen because the stairs posed too much of a problem, as well.   

In the midst of all of these tough times and adjustments for Stephen, his friends and family remained there for him steadily.  They celebrated his victories, supported him, and helped him through the harder times.  However, the progression of Stephen's disease began to take a toll on Jane.  Being a mother to then 3 children and also having to assist with his daily routine and activities was something she did with a happy heart, but the amount of work for one person was often too much.  Stephen eventually got pneumonia and the only chance he had to live was if the doctors carried out a tracheotomy, which would take away his ability to speak.  

It seemed like losing his voice was one of the biggest challenges for Stephen.  The movie portrayed his struggle with it and also the struggle he and Jane had to find a therapist that was able to help him.  After the search for a therapist he could connect with, Stephen began coping much better.  They found a click board for him to communicate with so that he was able to regain his voice.  This new addition brought Stephen back out of his shell and back to continuing his work with what he loved.  He became gradually more and more well-known for his profound works.  

Stephen Hawking passed away at the age of 76 this year on March 14.  He lived with his ALS diagnosis for 55 years after being told he only had a couple of years left of his life.  He continued to live his life to the fullest despite the many challenges and barriers that ALS brought him.  He touched the subjects of cosmology and physics and people all over the world deeply.  This movie portrayed a perfect representation of what ALS is and how it begins and progresses in an individual.  Stephen Hawking showed the world how to continue living and doing what you love despite challenges you may face along with way.  Jane Hawking showed the world the beautiful story behind Stephen Hawking and their life journey with ALS.  Below are photos of Stephen and Jane Hawking on their wedding day in 1965.

     

After watching this film, it was much easier for me to make the connections between the information we have learned in our lectures about ALS and this real life example of the disease.  It is so easy to be told what a disease is like and how it manifests within human beings, but it is more difficult to understand it as a real life occurrence.  Since seeing this movie, I understand the significance of occupational therapy's role with amyotrophic lateral sclerosis much better than I did before.  We, as occupational therapists, have to have a deep understanding of this disease so that we can better educate and prepare our clients and their caregivers on what to expect as the disease progresses.

While Stephen and Jane had a fairly good grip on what to expect for the remainder of Stephen's life with ALS, I believe occupational therapy could have provided more support for them as individuals and as a family.  With ALS, much of the occupational therapist's role is to provide comfort and support for the client and the caregiver(s) throughout the progression of the disease.  Stephen and Jane could have had occupational therapists assisting them as necessary in real life, but the movie did not portray any such outside support.  With that being said, it became very clear to me the large role that I could play as an occupational therapist for someone with ALS and his/her caregiver(s) during my future career.  Watching this film helped me gain a great amount of knowledge about this certain disease and how I can strive to better assist any future clients I may have with ALS, as well as those caring for them.