Neuro Note 4

Parkinson's disease

A test for Parkinson’s with a phone call

Max Little— June 2012

Little, M. (2012, June 1). A test for Parkinson's with a phone call. Retrieved from https:// www.ted.com/talks/max_little_a_test_for_parkinson_s_with_a_phone_call?language=en#t-238655

Max Little is an applied mathematician. He has a friend, Jan, who has Parkinson’s and it destroyed her ballet career. 6.3 million people worldwide who have the disease and have to live with weakness, tremor, and rigidity. Max believes we need objective tools that will diagnosis and detect the disease earlier and more accurately. Unfortunately there are no biomarkers that show Parkinson’s disease. The most accurate current test is a 20 minute neurological test that is costly and will require the patient to come into a doctors office to receive the test. The test in the neurologist clinic is around $300. The vocal folds are affected in patients with Parkinson’s and Max is tracking those differentiations to diagnosis Parkinson’s with a phone call. Max’s goals are reducing logistical difficulties, high-frequency monitoring, and low-cost mass recruitment. He has developed a non-expert test to diagnosis Parkinson’s. Parkinson’s Voice Initiative is a way that everyone can call into the hotline and leave small voice recordings in order for Max and his team to collect data and see if individuals are showing early signs of Parkinson’s through their voice recordings. The more data Max receives the more advanced his machine learning will become and the better detection rate will be for his diagnostic tool. He also will be using the voice call in service for patients with Parkinson’s disease to call in and their doctor will receive the recording in order to check up on their progress. The doctor will be able to tell the progression of their disease solely based on the voice recording. 

I chose this Ted Talk because of the technology used to detect/track progress of Parkinson’s disease. I believe technology can make our lives better, more convenient, and more accessible in terms of healthcare opportunities. I was very intrigued by Max’s talk about machine learning and how collecting more and more data will increase the accuracy of detection and progression. It is something that will be paramount in the coming years especially in the healthcare sector. 

In addition to above, I believe I learned how technology can not only help us as healthcare practitioners, but it can completely mold how we care for our patients. I know as occupational therapist we will use our therapeutic use of self every single day with our clients, and we will build lifelong bonds with them as well. However, in today’s world we can communicate with individuals through the internet we never would have had the chance to meet in our entire lives. This is a special time and we can take advantage of the technology we have to enhance and benefit our lives. I believe there will always be a special place for face to face, physical communication, but I do believe technology, machine learning, AI, Virtual reality will better our lives and the health of our world. 

Below is Max’s website:

www.parkinsonsvoice.org

Media Project

Innovator’s Statement

One of the most useful things I learned from this assignment was finding the right innovation that fit perfectly with my client. Once I figured out what activities my client could complete with his upper and lower extremities, I was able to use my materials to create something meaningful and therapeutic for him. Craig used to work 70 hours per week owning his own music store, so I wanted to incorporate music and business into his therapeutic innovation. I took the brown paper bag and created CD and DVD pouches that Craig would be able to slide or push CDs into. This is where the “ah-ha” moment came into play.

From this assignment, I learned how to take an ordinary item and transform it into a therapeutic medium that is useful and meaningful to my client. I believe having prior knowledge of spinal cord injuries and deficits at those specific injuries helped me tremendously. I was able to find what Craig could perform and areas he would need assistance. Also from this project I have learned that most items we have within arms reach can be adapted and used for a therapeutic purpose. I believe creating the CD pouches and sleeves are a simple solution that is easily teachable. Lastly, completing this assignment will help me become a more adaptable occupational therapist. I know looking back to this assignment will help me when I am working with clients and need to think on my feet about a quick, adaptable intervention. When you have a client that needs a simple solution specifically catered to their occupations and wants, sometimes you have to be able to create something out of nothing.

Neuro Note 3

ALS

Nancy Frates—October 2014

“Meet the mom who started the Ice Bucket Challenge”

Frates, N. (2014, October 1). Meet the mom who started the Ice Bucket Challenge. Retrieved August 18, 2019, from https://www.ted.com/talks/nancy_frates_why_my_family_started_the_als_ice_bucket_challenge_the_rest_is_history

Nancy talks about how in the Summer of 2011 her 27 year old son, Pete, was playing minor league baseball and got hit in the wrist while batting. His wrist went completely limb and was like this for several weeks. He went from doctor to doctor with no diagnosis but ended up at a neurologist and they clinically diagnosed him with ALS. Her son Pete was extremely passionate and strong after his diagnosis and decided he wanted to change the face of ALS and help find a cure for such an awful disease. They created “Team Frate Train” to help spread the word about ALS.  After a few years, Pete was put on a compassionate drug that was in trial runs; however, the drug came back with no efficacy. Two and a half years after his diagnosis he is completely paralyzed. He has a feeding tube, cannot speak, he uses a motorized wheelchair, he also uses an eye-gaze communication device. At the 75th year anniversary of the ALS disease BleacherReport.com asked Pete to write an article about the disease and his mother said he wrote the entire article using his eye gaze technology. July 27th was the first “ALS Ice Bucket Challenge.” The word spread like wildfire! After the Ice Bucket Challenge began, the media got ahold of Pete’s story and his website. First it was in Boston, second was National media attention, then it was celebrities, and lastly it was global news coverage. Pete’s favorite Ice Bucket Challenge video was Bill Gates, because he knew philanthropists like him would provide necessary funding to help find a cure for the disease. 3 pieces of advice Nancy wanted to give was: 

• Choose every morning to live your day in positivity and proactiveness
• Person in the middle of the challenge has to have mental toughness to put themselves out there
• If you ever find yourself in a situation that is so unacceptable that you cannot live with it any longer, dig as deep down as possible and GO AFTER IT!

I chose this Ted Talk because I participated in the Ice Bucket Challenge in 2014 and did not truly know the impact it was having. I think watching the video really opened my eyes to the progress Pete and his family are having in achieving a cure for ALS. I believe if finances are provided to help try to find a cure that we will find one during our lifetime. I believe it takes people like Pete, who has the disease, to reach out to individuals like Bill Gates, who has the financial means, to help put their strengths together and find a cure.

I learned more of the advocacy side of ALS from watching this video. I also learned that if you truly believe in something and want to get information, answers, or a cure then you have to FIGHT for it. Pete went from begin diagnosed with ALS at 27 years old to spreading news so rapidly that the richest man in the world did an Ice Bucket Challenge to raise money and awareness. If that doesn’t pump someone up to stand up for what their passionate about, then I don’t know what will. I truly have respect and courage from watching this Ted Talk. 

Here is the link to watch Bill Gates’s Ice Bucket Challenge. Enjoy.

https://www.gatesnotes.com/About-Bill-Gates/Bill-Gates-ALS-Ice-Bucket-Challenge

Neuro Note 2

Title: “Navigating Genetic Disease Testing: A Personal Story”—Seth Rotberg

Date: January 2018

Citation: Talks, T. (2018, March 06). "Navigating Genetic Disease Testing: A Personal Story" | Seth Rotberg | TEDxNatick. Retrieved August 11, 2019, from https://www.youtube.com/watch?v=5_O5TfMVqD8

Description of the material/experience and what I did to further his/her learning:

Seth describes the day he was clinically diagnosed with HD. He describes how HD can resemble ALS, Alzheimers, Parkinson’s all at once. He also states how patients with HD have a 10 to 20 year lifespan after first symptoms show. Seth also describes watching his mother go through HD with wobbly/uncoordinated gait, slurred speech, etc. While Seth was in college he was contemplating if he wants to get tested for HD. He described the process as "mentally draining" on whether or not he would test positive for HD. He did test positive, but he was reluctant to tell his family and friends. 

He joined a few HD organizations and people thought he was raising awareness because his mom has the disease, while all along he knew deep down he was positive. During his senior year of college, his friend Jake passed away unexpectedly in an accident. This shifted Seth's perspective on life and his friend's death changed his mind about keeping his HD a secret. One quote his friend Jake always said was, “Live as if you are to die tomorrow, and learn as if you are to live forever." He ended up losing another friend from a version of HD at the age of 26. Then Seth decided he was going to tell his dad and sister that he tested positive for HD. He vividly recalls telling his dad about his positive test. While his dad was upset with his positive test, he tells him they are making great progress in a cure for the disease. Telling his sister was different because his sister was upset he kept it a secret for 2 years. Later in the Ted Talk, Seth tells how his mom passed away from a 17 year battle with HD. He gave three pieces of advice to anyone looking to get genetically tested for a life altering disease. They are:

1. Work with a genetic counselor/neurologist in the field

2. Talk with your family/friends first

3. Things get tough. Each day is a new day!

Explanation of why I chose that as part of this assignment

I chose this because Ted Talks are always dynamic and interesting. Also, this was a personal story of someone battling HD. My sister-in-law recently was positively tested for HD and this Ted Talk paralleled her story almost identically. Watching it was almost like a movie that you have watched a thousand times but you still watch it again because it is so impactful. Since HD has such an impact on my immediate family I feel that I will always be drawn to learning more and more about the disease and how to help these individuals.

Reflection of what was learned/gained by the student in relation to this course content, including a recommendation for others to access the material/experience too

From this assignment I learned there are more individuals battling the fight to go through with genetic testing for HD. I know firsthand my sister-in-law and my brother were in a mental tug of war on whether or not to be genetically tested; however, knowing they want to have children one day motivated them to go through with the testing to hopefully prevent passing down the HD gene. I also learned that how every family dynamic is different and some individuals handle the genetic testing differently. Seth's account of learning you tested positive for a disease that will ultimately kill you was so eye opening. It just changes your life in the blink of an eye. All in all, this Ted Talk helped open my eyes to a different point of view of someone battling HD.
Below is a link to a webpage where you can find out additional information and also donate to help find a cure for hereditary diseases.
http://www.hdfoundation.org

A photo/link to a document/website/etc.

https://hdsa.org

This is a link to the Huntington’s Disease Society of America. There are many resources on this website to support/advocate for HD and hopefully find a cure one day!