You're Not You

Neuro Note 3 OT 537

The summer between fifth and sixth grade my (new) friend Ali lost her dad to a degenerative disease called ALS. I knew how sad it was and I was so heartbroken along with everyone else at vacation bible school and in our little sixth grade class. Over the next three years of middle school Ali and I were extremely close, however she rarely talked about her dad.

Image retrieved from:
google images

       Now thirteen years later I feel like I have a better understanding of what Ali and her family went through and maybe why she never really talked out it. Following the OT 537 lecture on Amyotrophic Lateral Sclerosis, I decided to watch the movie "You're Not You" about a woman, Kate, in her thirties diagnosed with ALS. The movie following this fictional character as she navigates her final years and the progression of the disease.
     Prior to the lecture and movie, all I knew about ALS was that it took my friends dad young and there was an ice bucket challenge to raise awareness. However I now feel like I have an understanding of what happens to an individuals body and the differing mindsets that one goes through. In the movie it is abundantly clear that Kate is of sound mind and is struggling with the people she knew prior to her diagnosis. "You're Not You" dives into what a diagnosis like ALS does to not only an individual but the support system as well.
      Kate's marriage struggles following her diagnosis, her husband is caring for her but begins to stray from their marriage and her friends begin to treat her differently. Because of this Kate develops a very strong relationship with her new caregiver. Together they join an aquatic therapy group and Kate is able to meet friends in similar circumstances. Her overall mind set is improved and she is able to enjoy her last months. SPOILER, in the end she is able to make amends with her husband and friends and they have their time together as well.
      I do believe that this movie brings to light issues that Occupational Therapist are responsible for addressing which is support system education and assistance. I know my childhood friends family could have found benefits in additional supports. This lead me to research ALS support groups. For the purpose of this blog I searched the state of Tennessee. I found that there are 5 support groups across the state located in the Tri-Cities, Knoxville, Chattanooga, Nashville, and west TN. I will link that information below.

image retrieved from google images.

      I also looked into resources for children. I found that the ALS association has linked approximately 17 sites for more information for children to learn about or cope with a family member having ALS. This includes grief camps and counseling, webinars, and Facebook pages. All incredibly help resources for families to build a community of others who understand what they are going through.
     Overall I think raising awareness about ALS and the effects it has on families is imperative and movies like "You're Not You" are essential to that process. Occupational therapy plays such an integral role in helping individuals and families learn about what is going to happen next and make sure they know that they are not alone.


Links:
You're Not You: Ways to Watch
Tennessee ALS Support Groups
ALS Children's Resources


Reference:

Children's Resources. (n.d.). Retrieved from http://webdc.alsa.org/site/PageServer?pagename=DC_8_PALS_Resources_Children


Support Groups. (n.d.). Retrieved from http://webtn.alsa.org/site/PageNavigator/TN_8_SupportGroups.html?_ga=2.57776418.947242325.1566101634-5536838.1564614921&_gac=1.116540148.1566147328.CjwKCAjw7uPqBRBlEiwAYDsr1xdM_DzPu-ejSGqdjc6DorEvCOlo4rDC6VGgw8AtNb7bcHpArxjFXRoC8w4QAvD_BwE

Queer Eye: Disabled But Not Really

Neuro Note 2 OT 537

Advocacy is SUCH an integral part of occupational therapy and let me tell you, pop culture is beginning to advocate for special populations in ways that make my OT/s advocation heart SING.

The show "Queer Eye" by Netflix is a show about transforming 5 aspects of a persons life; eating habits, personal style, appearance, home/interior design, and lifestyle and culture. I have enjoyed this show for a little over a year now. Queer Eye is such a happy, uplifting show and delivers message about self acceptance and advocacy. The second episode of the fourth season profiles a man named Wesley Hamilton, he is in his early 30s and is 7 years post spinal cord injury.

Wesley Hamilton
Image retrieved from: disabledbutnotreally.org

A little about Wesley and his injury. At the age of 24 Wesley was shot multiple times in the  and thus sustained a lower level spinal cord injury, specifically a T11-T12 incomplete SCI. He still has mobility and function in his upper extremities and values spending time with his daughter and family, working out, running his nonprofit, and motivational speaking. His spinal cord injury has CHANGED HIS LIFE and he has the most amazing attitude however it did not start this way. He initially struggled with depression, self image issues and debilitating decubitus ulcers (bedsores) that led him to hospitalization and surgery. Wesley began transforming his life through diet and exercise.

After the transformation in his life Wesley began the "Disabled, but Not Really" nonprofit organization to spread awareness about nutrition and healthy living for people of all abilities. There mission is as follows;

"Our mission is to instill in those with disabilities, a physically limitless mindset that breeds courage, confidence, and competence. Our core beliefs are in promoting fitness, providing the opportunity to become productive and self-serving while gaining the knowledge necessary for a living a nutritional lifestyle.

At Disabled But Not Really, we believe that our horizon is only as far as we accept it to be. Our vision is to create an environment where anyone with a disability can find a safe place for growth. We intend to develop facilities where not only our adaptive athletes can learn, grow, and thrive, but their families, spouses, and caregivers can as well."

The DBNR website profiles seven athletes who are currently working and training with the non-profit. Of these seven athletes six has sustained spine cord injuries at varying levels mostly in the thoracic region. This organization is bring awareness to the athletic community about the ABILITIES of individuals with SCI and other "disabilities" that are typically misunderstood. I think moving forward I will use Wesley's story to inspire others; both individuals I meet in a therapy settings and in causal settings.

Another thing I have taken from this research and the episode of QE was the amazing remodel that was done of Wesley's home. The Fab Five restructured Wesley's bathroom to make it more accessible to him and give in quite a bit more independence. To do this remodel, Bobby Berk, Antoni Porowski, and Karamo Brown met with Wes and essentially did and occupational profile to determine what barriers he was facing and ways to adapt areas of his life for improvement. The laundry room was moved to an accessible location with a front loading washing that Wesley is easily able to reach, all cabinets in the kitchen are now low enough for easy access, the bathroom mirror has been slanted downward so he can see himself to get ready, and so many other subtle but life changing modifications. 

Image retrieved from: google images

I highly recommend taking 60 minutes out of your day to watch Queer Eye but specifically this episode, then take another 10 and do some research on DBNR, then if you're really feeling it watch Wesley's Ted Talk below. Learn and advocate, just like the fab five and Wesley have done and are doing!!!

 Wesley's TedTalk

Reference:

Bio. (n.d.). Retrieved from https://www.iamwesleyhamilton.com/bio

Lewis, A. (2019, March 15). Queer Eye is back! So here's everything you need to know about the Fab Five. Retrieved from https://www.cosmopolitan.com/uk/entertainment/a18283218/queer-eye-netflix-fab-5/

SCI Superstar: Wesley Hamilton. (2018, February 26). Retrieved from https://spinalpedia.com/blog/2018/02/sci-superstar-wesley-hamilton/

We have a vision to inspire and empower the global disabled community through fitness, nutrition, and wellness. (n.d.). Retrieved from https://disabledbutnotreally.org/our-team/

Yang, S. (n.d.). Wesley Hamilton thanks the man who shot and paralyzed him on 'Queer Eye' Season 4. Retrieved from https://www.kansascity.com/news/local/article232753482.html

Hilarity for Charity: Is it groundbreaking for this generation?

Neuro Note 1 OT 537

      I have started a new routine. I decided to wake up every morning no later that 8:00 a.m. and watch the morning news. This morning (7/15/19), I was watching the Today show and considering what topic I would cover for my first Neuro Note when low and behold Seth Rogan is on my TV screen talking about Alzheimer's disease. 

Link to Hilarity for Charity
Image from: google images

      The segment was about millennials and prevention of diseases that effect the brain, specifically Alzheimer's disease. In 2012 Seth Rogan and his wife started a foundation titled "Hilarity for Charity" which centers on research for degenerative brain disease, awareness for individuals in their 20s and 30s to prevent brain disease, and destigmatizing ideas surrounding brain disease. The segment also interviewed three millennial who advocate for Alzheimer's awareness and prevention. One being a published author that I will touch on later.

      I did some further research into the website and I was immediately prompted to sign up for information with boxes like caregiver resources, events, advocacy, brain healthy tips and Alz news. Following this I clicked the tab "This is Alzheimer's" where there are facts and personal stories about the disease. Some facts listed are as follows:

•  5 million Americans are living with Alzheimer's disease.
• Alzheimer's is the 6th leading cause of death in the US. 
• Alzheimer’s is the only cause of death among the top 10 in America without a way to prevent, cure, or even slow its progression.  

      I took the time to read 3 of the 20 plus stories written on the website. The personal testimonies and information provided was raw and eye-opening. One quote from the stories I read jumped out to me:

 "Jo was finally diagnosed when he was 37, he’s now 42 and in the later stages of the disease. And also that Alzheimer’s affects all parts of the body as the brain is continually and irreversibly damaged; it isn’t just about forgetting – if only it were that simple." 

Link to buy Genius Foods
Image from: Amazon

This really goes to show that Alzheimer's does not discriminate based on age. Thats why in the Today show segment the profile of a young man in his 30s, Max Lugavere, who wrote the book "Genius Foods" but the help of Paul Grewal, MD. This book focus on foods to help maintain brain health. On the Today show and in the book discussion of an increase of antioxidants in ones diet. I did some follow up research and according to the journal Neurological Sciences article "Dietary Pattern in Relation to the Risk of Alzheimer's Disease: A systematic review" there is a correlation. Hilarity for Charity briefly mentions diet under their tab "Brain Health."      As an occupational therapy student it is my job to learn about neurological disorders and how to advocate for individuals with neurological disorders however today I feel like I learned a little about how my generation is working to prevent early onset of the neurological disease that takes away one's memory.

Andres Lozano, TEDtalk
TEDtalk on Deep Brain Stimulation
Image from: google images

      One final point I would like to make is from a TEDtalk I watched. This TEDtalk was filmed in 2013 and focused on Parkinson's Disease and deep brain simulation however it the final 5 minutes the talk touched on Alzheimer's and its correlation to deep brain simulation. The talk discussed using deep brain simulation to increase glucose level in the brain to "turn the lights back on". I would love to see some of the neurological aspects of Alzheimer's Disease integrated in the millennial discussion. Maybe I will write in to Seth about glucose levels and deep brain stimulation to get the word out there.

 Reference

Hilarity for Charity. (n.d.). Retrieved from https://hilarityforcharity.org/ 

Lozano, A. (n.d.). Retrieved July 15, 2019, from https://www.ted.com/talks/andres_lozano_parkinson_s_depression_and_the_switch_that_might_turn_them_off#t-800364

Samadi, M., Moradi, S., Moradinazar, M., Mostafai, R., & Pasdar, Y. (2019). Dietary pattern in relation to the risk of Alzheimer’s disease: A systematic review. Neurological Sciences. doi:10.1007/s10072-019-03976-3

TodayShow. (n.d.). Retrieved July 15, 2019, from https://www.today.com/video/getting-ahead-of-alzheimer-s-young-people-look-to-protect-brain-health-63867973518

On Bed Mobility: Biomechanics Blog Post Seven

Mobility is something most people take for granted. We think nothing of walking across the room to pick up an object or even getting out of bed without additional devices or help. However these abilities are not available to everyone whether it be due to a disability since birth, degenerative diseases, age, or an acquired injury.

Knowing the aforementioned information, it is helpful to know that there is also a "Hierarchy of Mobility Skills" that scale mobility from bed mobility to to community to mobility and driving. I personally had not taken the time to think of mobility in a specific order before learning of this BUT now that I do know I think it makes perfect sense. When learning or relearning mobility skills it is critical to build on the skills. Starting with bed mobility and moving to mat transfers, wheelchair transfers, bed transfers, mechanical ambulation for ADLs, toileting and tub transfers, car transfers, functional ambulation, and finally community mobility and driving is the technical chronological order.

I do think it is important to note that the order of learning these skills can overlap and should overlap. A person should find their just right challenge and use self reflection to find their level of comfort in moving from one skill to the next. I also think it is important to note that learning proper mobility takes practice and can be adapted slightly per person. In lecture we were shown a video of an individual with a spinal cord injury getting in and out of bed. He has learned this skill and adapted it to his personal preference while still following safety precautions. In simulation lab we as class learned that doing this the first time can be awkward however we found that practice is key and I believe it will be the same when working with clients.

I agree with the hierarchy of mobility skills as a blueprint for adaptations of movement and ADLs. I look forward to applying the knowledge in practice in the future!

Assistive Devices: Biomechanics Blog Post Six

Assessing proper fitting for: Canes, Axillary crutches, Lofstrand crutches, Platform walkers, and Rolling walkers

Why is important to fit an individual for an assistive device? For one, no two people are made the same therefore to properly fit an assistive device an individuals height, stability and comfortability must be taken into account as well as their needs. For example does this person fatigue easily? Should they be fitted for a device that includes a seat? Or does this person need supplemental oxygen? Should they be fitted for a device that includes space for an O2 tank?

How exactly does one fit for these five different devices?

Image retrieved from google images

Canes: Have the client stand with arms relaxed at their side. The cane handle should be in line with the wrist crease, ulnar styloid, or greater trocanter. When holding the cane the elbow should be fleced approximately 20-30 degrees.

Axillary Crutches: Estimate the length of the crutches based on the individuals height, the arm rest should be 2 to 3 finger lengths from the axilla and hand grips should be in line with the greater trochanter. Have the client stand with arms relaxed at sides and adjust height of crutches accordingly.

Lofstrand Crutches: Hand grips should be facing forward and at the height of the clients greater trochanter. The arm band should be positioned 2/3 of the way up the forearm, proximal to the elbow.

Platform and Rolling Walkers:  Estimate the appropriate height of the walker based on the clients height, adjust the hand grips so they are in line with the greater trochanter, ulnar styloid or wrist crease. Elbows should be flexed to approximately 20-30 degrees. *Platform walkers should have the platform positioned to allow the elbow to be flexed to 90 degrees, the proximal ulna should be positioned 1 to 2 inches off the platform surface. The handle of the platform need to be position medially for the clients grip comfort.

Information retrieved from MOBI app.

Proper Posture and Body Mechanics: Biomechanics Blog Post 5

The right way to sit and the right way to move; could it be life changing? 4 main reasons to adjust your posture and movement for improvement!

1. Maintaining natural curvatures of the spine. There are two lordotic curve and two kyphotic curves. Deformation of these curves can lead to a plethora of issues such as thoracic kyphosis, lumbar lordosis, flatback, swayback, or kyphosis-lordosis. 
2. Alignment of the body parts. The ideal position would have gravity centered over the base of support. This allows body systems to function properly.
3. To avoid disc compression. When the spine is overly flexed or extended it has the potential to result in a bulging, herniated, ruptured, or even fragmented disc. 
4. Prevent back pain. Back pain is a result of bad posture, lack of flexibility, improper body mechanics, or excessive stress in various aspects of life.

Using OT to intervene with issues of improper posture and poor body mechanics:

1. Demonstrate proper lifting techniques; using the rod to show the erect back, bending of the legs, and the weight being as close to your body as possible.
2. Go through various therapies in different sitting positions explaining the different positions and their importance. Examples being anterior sitting prior to standing to catch a ball or middle sitting to play cards.

A Strange Short Story: Biomechanics Blog Post Four

Man from the South

The man from the south is a short story about a betting man and a solider he encounters on a sunny day at the pool. In the story the betting man habitually bets his car or the cutting off of a finger. In the end we come to find that his wife has been betting him for quite some time and has lost three fingers in the process. 

For the purpose of this blog post I will be focusing on the wife and her unfortunate finger loss. She has been left with a thumb and index finger. Many activities of daily life will be affected but since it is told in the story she has a car I have decided to focus on her ability to drive. Driving will be affected because the wife will have trouble gripping the steering wheel with only two fingers. The typical grip for holding a steering wheel would be a power grip however with only a thumb and index finger this may be challenging. Strategies to combat this barrier would be grip strength exercises to improve pinch grip. 1 modification I came up with would be adding velcro to the steering wheel and making her a velcro glove. This way she can use her palm and ensure that it is on the wheel, while using grip from the two fingers to turn the wheel back and forth.