Simpler Solutions to Complex Problems

Mileha Soneji: Simple Hacks for Life with Parkinson's Disease

I chose this topic because I personally know someone who has early-onset Parkinson's as a 36 year old male (we'll call him Mike) and I am interested in learning more about it because of him. I know two older men that also have it, but I feel that it is a different situation when you begin to have symptoms in your thirties, especially since only 4% of people are diagnosed with this disease before the age of 50. Mike has a wife and a two-year old son and is the chef at a local community college, as well as a missionary. This diagnosis affects his ability to perform and do things in the capacity he should be able to do them. I chose this specific Ted Talk because of a quote I saw in the description of the video. It read, "Technology is not always it. What we need are human-centered solutions." This is what the speaker, Mileha Soneji, said. So, before I even listened to her talk or watched the video, I knew that I would connect with what she has to say, because as a future OT, this statement encompasses what we do. Of course, technology is applicable and necessary, too, but it is more about being human-centered and focused on one particular individual's wants and needs. There isn't a "one size fits all" answer, nor should there be.

First, I needed to look up Parkinson's and what it means to have this disorder. So in brief, Parkinson's is a neurodegenerative disorder of the brain. It affects the dopamine-producing neurons in an area of the brain called the substantia nigra. It is considered a movement disorder because of the effects it has on one's ability or disability to move. It is characterized by tremors, rigidity, and slowness of movement. Symptoms typically occur slowly, over long periods of time and years and most people are diagnosed after the age of 50. There is no specific cause or cure for the disease, but there are treatment options. 

Mileha opens the discussion talking about her uncle; the life of the party, the funnest guy she knows, a wealthy, successful, and powerful man. She briefly talks about the changes she's seen in her uncle as a result of his diagnosis of Parkinson's. He can no longer walk without a walker. His movement is very slow and purposeful. When he turns around, he has to do so one step at a time and it takes him a long time. Another thing he has difficulty with, that I take for granted on a daily basis, is the ability to drink his coffee or tea everyday without spilling it because of his hand tremors. Many things have been altered in his life and changed because of this disease, but these are the two things she focused on in the talk. 

Mileha said that her aim in her "research" observing her uncle wasn't to cure Parkinson's disease. She simply wanted to "target everyday activities and make them simpler in order to make an overall larger impact" (HELLOOO OT). First, she looked his desire to drink coffee or tea. This is something that is important to him. So, she invented the no-spill cup. Simply by the form/shape of the cup, it made it much harder for a liquid to escape the cup or be spilled. What she also noted was that this cup was not marketed for "people with Parkinson's disease". Anyone that wanted to could use this cup and benefit from it. The second thing she noted, or observed, was his slow movement and the fact that he walks on a walker. She thought about the fact that if it is this difficult to walk on flat ground, how in the world would her uncle do on stairs? She pointed out that there aren't escalators in India (where they are from) and if he were presented with stairs, how would he be able to take on that task? So, she took him to a staircase and said, "show me how you do this." To her surprise, he left his walker at the top of the stairs (so he wasn't using it) and presumed to walk down all the stairs, make a turn, and walk back up the stairs with ease! She was astonished at this! She did some research and found that because walking up and down stairs is a continuous movement, he is able to do it without thinking about it, as opposed to the skillful steps and thought process it takes for him to walk on flat ground. 

This is super interesting to me because Mike (the guy I know) is a chef. Whenever he gets a knife in his hand, he can julienne, mince, and chop like its his job (because it is). I have wondered how someone with hand tremors can chop vegetables and do it quickly and more efficiently than someone without this disorder and I assumed it was because he had been doing it for so long. But now I see how his ability to use a knife and cut and chop foods very very quickly is in part because of his skill level (culinary school, etc.), but also because this is probably similar to a continuous movement for him. He doesn't have to think about it. I would love to do some research on this and find out more about it.

Back to the Mileha. Because her uncle was able to walk the stairs so efficiently and with ease, she tried to simulate stairs in his home to see how it would work in a different context. She had three-dimensional models of stairs drawn/made and placed them on the floor in her uncle's living room. She called it a staircase illusion. It looked like stairs, but was really just flat ground. Guess what he did? He picked up his walker and walked across the FLAT ground with no issues. Pretty amazing! Mileha said that she wished everyone with Parkinson's could feel like her uncle did that day when he did that. Her aim is for her uncle to feel that confidence in himself everyday. She wants to put the staircase illusion throughout his home so he can feel like that everyday. She emphasized that she should keep this intervention or modification simple and not try to make it more than what it is. She wanted it to remain low-tech and tailored to her uncle.



In conclusion, this video was short, but it contained a huge message. Not only does this video apply and relate to occupational therapy, but it has a bigger message. Solutions do exist that don't require a lot of expense or high-tech skills. "All we need is a little bit of empathy and some curiosity...". Mileha poses the question of what if we all went out and did our part to come up with simple solutions? We could put our solutions together and really make a difference. I can't help but relate this to OT and the difference we can make in the lives of patients with neurological disorders, as well as other disorders and impairments, whether they be temporary or permanent. 

This video really inspired me to seek the simple and remember that treatment is client-centered and truly based on an individual's wants and needs. It also helped to solidify that people are more than their disease or diagnosis, and they should always be treated as such. In an instant, the switch could be flipped and roles reversed. How would I want someone to view me if I had a neurological disorder such as Parkinson's? I think I would appreciate the time and effort spent on finding a solution just for me; one that makes me feel confident in my abilities and the person that I am.



I wish this video was longer and I will probably look to see if the author has any more videos. But, here is the link for this one if anyone wants to be inspired and smile.

https://youtu.be/Gg5M3J_FHXY