Media Project

 

    The client I focused on for our Media Project was Barbara, a 64-year-old woman who was diagnosed with Relapsing Remitting Multiple Sclerosis about 30 years prior. She lives at home with her husband and adult son, enjoys crafting and sewing, has decreased memory, increased fatigue, and has experienced a significant loss of upper and lower body strength. Her doctor advised her to continue an exercise program when she gets home from her hospital visit, but she gets bored with ordinary exercise programs easily. For her case, I created a therapeutic activity that she can do when she is feeling fatigued and needing to sit down which will allow for an enjoyable task outside of her exercises. It is a lacing activity since she likes sewing and crafts. The materials I used were a paper folder, yarn, and a piece of tape. I chose this activity because it can be used to channel her creative side which could enhance her quality of life and mental health. She can punch holes in the folder wherever she wants, lace them in any direction she prefers, have multiple folders for different options, and pick some that are her favorite designs or colors. The activity can be adapted by cutting the folder in half or not (to make easier or a little more challenging to manipulate), punching more or few holes, and doing certain lacing techniques that may be easier or considered to be more difficult. This assignment supported my learning in this course because it required me to think from a holistic perspective for clients’ sakes and offer the best options for them. Neuro Aspects includes a huge emphasis on occupational performance. 

Neuro Note #6 - Guillain-Barre Syndrome (GBS)

 

For my final neuro note of Neurological Aspects of Occupational Performance, I read a self-reflection by Lori Basiege, a woman who is an administrative assistant at “GBS|CIDP Foundation International” who was diagnosed with Guillain-Barré syndrome (GBS) during her time in undergraduate school. GBS is an autoimmune disorder that results from one’s immune system attacking the nerves that carry signals to the brain, causing myelin sheath degeneration and affecting the peripheral nervous system. The first symptom Lori noticed was fatigue even after trying to combat it with vitamins and change in diet. Eventually, she began noticing muscle weakness, so she called her mom who demanded she go to the E.R. It wasn’t until her second visit to a different hospital that she was immediately diagnosed with GBS by a neurologist almost immediately. After 18 days of plasmapheresis, an intervention that exchanges blood plasma, she was released from the hospital. Years later, Lori decided to leave corporate America and pursue work with a nonprofit for GBS, which is her current position (Basiege, 2022).

In this course, I have learned that there isn’t a set age range for people to be diagnosed with GBS. Lori was diagnosed at a relatively early age, but some can be as early as four-years-old, unfortunately. I can only imagine how she felt as a college student, finally feeling the independence of being away from home and then learning that she would lose it, to some degree, for the rest of her life. As we learned in class, her lower extremity could be most affected, causing difficulty with dressing and toileting. She didn’t mention how her experiences with ADLs have been affected, but she gives the energy in her writing that she is not struggling with quality of life. She states she wants to remain positive, which is the phrase that helped her get through treatments. I would consider Lori to be inspirational and a role model because of this.

References

Basiege, Lori. (2022, April 22). Patient stories: Lori Basiege. GBS/CIDP Foundation International. https://www.gbs-cidp.org/patient-stories/lori-basiege/

Neuro Note 5 - Amyotrophic Lateral Sclerosis (ALS)

     

    I’m back with another Neuro Note, and this week’s topic is Amyotrophic Lateral Sclerosis (ALS), most commonly known as Lous Gehrig’s disease, which is a progressive neurodegenerative condition that affects one’s motor abilities. I read the story of Lauren “Lolo” Spencer, a rambunctious woman who was diagnosed with this condition at the age of 14 (Bergeron, 2019). The typical prognosis for ALS is 2-5 years but because she was diagnosed at such an early age, she had been living with it for 18 years in 2019 when the article was written, so it’s been 22 years now! Lolo was a very energetic girl who loved running, dancing, and street hockey, but she noticed she was a lot more fatigued and felt like her muscles were weakening despite being so active. She started using a wheelchair to get around at 19, five years after her diagnosis. At the age of 32, she said “My body has changed very slowly, thankfully, I just made a decision that I was going to live my life to the fullest. [ALS] was not going to be my story” (Bergeron, 2019).

    Although Lolo is thriving, she shared that accessibility to buildings, the street, and public transportation are a constant challenge for her and others who use a wheelchair to get around. She soon realized that there weren’t many online resources of people with disabilities telling their first-hand daily experiences, so she decided to create her own platform to share her own “real deal”. Her Instagram account is @itslololove and her YouTube is Sitting Pretty. Her goal was to become a positive influence on the disability community, doing product reviews, life hacks, giving dating and relationship advice, and general life advice for dealing with the harsh ways of society. She shares a lot of bright moments in her life like traveling with friends, clubbing, and doing fashion shoots, but also wants to avoid creating “inspiration porn”, which is a term used to describe how others view people with disabilities’ every move as being inspirational. Spencer states, “we’re able to live our lives as fruitfully as we can in spite of having some level of limitation” (Bergeron, 2019).

    I thoroughly enjoyed reading Lolo Spencer’s story and her experiences with ALS. This helped further my learning by providing a positive insight into what people with this condition can experience with the right mindset, although other factors like age and cognition before diagnosis are important to consider. I admire that she refused to let ALS define who she is and wanted to help others who may be experiencing the same or similar obstacles by setting an example that may inspire them to make the most out of their life. I chose this source to read among the others because of that reason. It’s important for me as a future OT practitioner to gain this insight to better assist my clients with their needs as well as advocate for them when it comes to accessibility, for example. Something I learned from the reading is that a prognosis of 2-5 years is not a guarantee for everyone who is diagnosed with ALS and that it is super helpful and important for people to be a little transparent at times so others can know they’re not alone and hopefully benefit from seeing it. The link to Lolo’s story is included in the reference below!

References

Bergeron, Ryan. (2019, June 8). Diagnosed with ALS at 14, she’s now a disability lifestyle influencer. CNN. https://www.cnn.com/2019/05/31/health/turning-points-lauren-lolo-spencer-als-disability-lifestyle-influencer/index.html

Neuro Note #4 - Spinal Cord Injury

 

For this week’s neuro note, I chose to read an article titled, “Jocelyn’s Gender-Neutral Nursery Renovation” written by a blogger who has a 10-month-old child and wanted to share Jocelyn "Jos" Franciscus' inspiring story. Jocelyn has a Spinal Cord Injury (SCI) which resulted in quadriplegia and her being paralyzed from the torso down without finger function. She coordinated and designed her daughter, Myla’s, nursery with her cell phone prior to Myla’s birth. Jos and her husband, Michael, bought a home that, fortunately, was equipped with a ramp and was very wheelchair accessible. It was important to them that the nursery be gender neutral to avoid gender stereotypes as well as the consideration that Michael would be spending a lot of time there caring for Myla. Jos said the most challenging part of the entire process was coordinating tradespeople with all their different schedules, especially being that this was her first time needing to do so. She is a very organized person and found it difficult rely on others so heavily for something she once did with ease. After finishing her daughter’s nursery, she now consults for children’s interiors giving her best advice. A few of her recommendations include “have fun with it!” and “with a bit of forethought and preparation, a nursery can become a haven that grows with them for many years to come” (Anderson, 2016). I think this is great advice.

I chose this resource among all the choices because I was curious about how a person with a SCI can complete home renovations like a nursery and I also love to see nursey designs! Fun fact: I looked Jocelyn Franciscus up on Google and it turns out, she's an Occupational Therapist! Anyways, what I took away from the reading is that a SCI should not hold someone back from their passions in life and they can do what they love with a few modifications. I believed this prior to the reading, but I learned more about how that can be achieved specifically. She made use of today’s technology, her support system, and professionals who could get the job done physically because she had the resources. I would recommend this reading to others because it is insightful for anyone who wants to learn more about SCI’s and nurseries!

References

Anderson, M. (2016, April 17). Jocelyn’s gender-neutral nursery renovation. House Nerd. https://www.house-nerd.com/blog/articles/jocelyns-gender-neutral-nursery-renovation  

Neuro Note #3 - Huntington's Disease

 

In order to further enhance my learning about Huntington’s disease (HD) outside of the Neuro Aspects course I’m taking in OT school, I watched a brief video titled, “Huntington’s disease: I’m taking a test that will reveal my future”, about a family from the UK who have been affected by this disease. In the film, two sisters, Danielle and Sophie, have a mom, Lisa, in the late stage of Huntington’s and have opposite opinions on if they want to do the genetic testing that will determine if they have the gene from their mother. They understand that there is a 50/50 chance that either of them could have inherited it, which is also what we have learned in class. Sophie doesn’t want to know if she has it because she feels like there will be a “dark cloud over [her] for years to come” while Danielle prefers to know as she is a newlywed and would love to have children. In the end, we learned that Danielle did have the gene for HD and she may not show symptoms for at least 10 years. She went on a honeymoon cruise shortly after (Wright & Beale, 2020).

Danielle mentioned that in the beginning, her mom often walked like she was drunk and broke her arm and hit her head around this time, too. This relates to our course content because knowing that she had trouble with balance and coordination lets us know that it involves the functioning of her cerebellum and basal ganglia. As she progressed to the late stage, she needed full-time care, was tube fed, and was unable to complete ADLs on her own. It was shown in the video that Lisa had caregivers outside of her family who helped her with these activities like putting on makeup and getting dressed to go out.

I chose to watch this BBC interview because I wanted more insight on how HD effects families and to see firsthand how people who have any relation to it, whether they are experiencing it or providing care, feel daily and/or overall. As of now, there is no cure for this disease and clinical trials are taking place to see if new agents might slow down the progress or prevent it from developing in the future (Wright and Beale, 2020). 

References

Wright, A. & Beal, T. (2020, February 1). Huntington’s disease: I’m taking a test that will reveal my future. BBC News. https://www.bbc.com/news/av/stories-51310996

SLUMS Assessment Simulation Report

 

    As part of the Neuro Aspects course I'm taking in OT school, I participated in a clinical simulation encounter today during which I administered a cognitive screening to a person with a recent history of stroke. This assessment is called the St. Louis University Mental Status exam (SLUMS). The purpose of this exam is to assess a person’s cognitive state and be used as a screening tool over periods of time. Cognition can be described as a mental process that requires input from one’s thoughts, senses, and experiences (“What is”, 2015). Occupational therapists’ role when assisting clients with cognitive deficits is to give them the best opportunity to do their occupations by playing to their strengths, considering assistive devices, and/or modifying their environment so it is safe and accessible.

    The actor client, Harper Henshaw, got a score of 21 on the SLUMS. This score indicates a “mild cognitive impairment” for clients with a high school education. People who are in this stage experience memory loss and problems with judgement. In a home setting, they will most likely have trouble remembering tasks and events but will be able to live functionally overall. In my explanation of OT to the client, I feel as though I did a decent job of making it understandable and pointing out that we can help them work to their strengths and/or modify their environment. I adapted the “elevator speech” by including occupations that the client might like to do like completing puzzles and explained that we help with things they want and need to do.

    I feel like I did a good job of keeping the experience subjective rather than telling the client she did great or saying “perfect” which can be misleading. I let her know that it wasn’t a pass or fail test and it would be a tool used to see where she is with her memory. If given the opportunity for a re-do, I would use hand sanitizer when I walked in the door and think of some better topics for small talk once the assessment was over. My big take-away of this whole process was that sometimes the encounter will not go as expected or the client may think of a question differently than we intend but we should always be adaptable and document anything worth noting. Going forward, I will use what I learned by applying it to future sessions and especially fieldwork opportunities so I can learn even more before I become an official Occupational Therapist!

References

What is cognition? (2015, August 19) Cambridge Cognition. https://cambridgecognition.com/what-is-cognition/#:~:text=Cognition%20is%20defined%20as%20'the,used%20to%20guide%20your%20behavior.

Neuro Note #2 - Traumatic Brain Injury

 

I took the time to read the article titled, “When A Prisoner Returns Home with A Brain Injury, Freedom Isn't So Free” written by Christie Thompson and Joseph Shapiro about a man, Chuck Coma, who sustained an anoxic TBI during his time in federal prison after being assaulted by his cellmate. Chuck was a war veteran who suffered from PTSD after witnessing a grenade kill to men in his unit shortly after they arrived in Iraq. He experienced great discomfort from his disorder and eventually turned to alcohol and cocaine to self-medicate and bury his memories. His life took a turn as he obtained more and more criminal charges such as DUIs, drug possession, and assault. Eventually, he turned to armed bank robbery and suggested that maybe he found romance in the idea of being a bandit (it is suggested because the interview was gathered after his TBI).

Before the incident, Chuck had a sweet spot for his mother and was always very affectionate towards her. But when he returned home, he had outbursts of frustration and would often swear at and threaten her which was very unlike him. He also experienced confusion and would take off, requiring his mother to come after him. Once, she found him walking on the side of the road and then took a fall. As she tried to help him into the car, he screamed that he was being kidnapped by a woman, which resulted in him being admitted into a psychiatric hospital. Overall, Chuck’s symptoms following his TBI included tremors, lack of balance, intense irritability and frustration, and amnesia.

I chose this reading to further my learning because it pertains to the prison system, which I am usually interested to know more about since my dad was incarcerated for seven years. The reading opened my eyes even more to people’s experiences in federal prison, solitary confinement, and more importantly the effects a TBI can have on someone both long and short term. This relates to our course content because we have learned about the symptoms of his injury such as amnesia as well as decreased balance and tremors which can relate to the cerebellum’s functioning. Additionally, Chuck displayed the common symptoms of a TBI that relate to behavior which were combativeness and agitation. Lastly, as future OT practitioners, we may have a client who spent time in prison and it’s important get an understanding of their mental health and experiences from being there so we can offer the best care for every individual. I would recommend this reading to others because it is informative and offers the perspective of someone who had these experiences firsthand.  

References 

Thompson, C., & Shapiro, J. (2019, December 17). When a prisoner returns home with a brain injury, freedom isn't so free. National Public Radio. https://www.npr.org/2019/12/17/788824775/when-a-prisoner-returns-home-with-a-brain-injury-freedom-isnt-so-free