Neuro note 4: Patient Perspectives - Lisa Maczura

For this neuro note, I searched for a podcast to listen to because I was hoping to get a great client's perspective on living life with a disability.  The podcast that I chose is part of a series called Senior Rehab Podcast. This podcast series is guided by a physical therapist named Dustin Jones with a mission to give a voice to the aging population.  In the podcast I listened to was an interview between Dustin Jones and a lady named Lisa Maczura.

Lisa is a women who has lived her life with cerebral palsy (CP). In the podcast, she describes her experiences in life but especially within her physical therapy (PT) treatments. She describes her childhood and the physical therapy services she received through her school up to the sixth grade. From her therapists in elementary school she gleaned that she could get better if she worked hard enough.  It was later in her teenage years that she realized the reality of her chronic disability. When elementary school ended, she felt as if her PTs just dropped her and said, "you can walk, you will be fine." She felt disregarded and had pretty negative feelings about PT.

Lisa encountered physical therapy for a second time when she went to the doctor for lower back pain.  The back pain was due to poor hip flexors and the doctor referred her to PT.  She was nervous about going because of her previous experiences and feeling her physical handicaps were misunderstood.  The physical therapist was testing some of her leg strength and there was a move she could not complete.  She expected the therapist to freak out and scramble and not know what to do.  Instead, he was calm, had her do an exercise to increase movement, and had her try the move again.  This time, she could move her leg some.  This was so important to her because it gave her a small victory and she knew that her therapist was there to help her.  Over time, she developed an even stronger relationship with her PT and she now fully trusts him with her care.

Lisa asks for therapists to take the time to ask what is important to the client.  She pleads for therapist to pursue the client's wishes instead of their own agenda.  She would like for therapists to ask about previous therapy treatments and what worked and what didn't.  Mainly, she wants the therapists that see her to have empathy.

I learned a lot from this podcast about the care I should be providing for my client.  Even though therapy will be my job day in and out and will seem like I'm seeing the same types of clients, I need to remember that each client is their own person and has their own personality and story in life.  I need to be aware of how I treat my clients and the relationship and trust I am forming with them.  I need to be certain not to be discouraging in my initial evaluation because people are often looking for someone else to just reject them.

Please go listen to this great client's perspective to learn how you can become a better caregiver. The link is below!

Jones, D. & Maczura, L. (2016, June 20). 32: Patient perspectives: Lisa Maczura. Senior Rehab Podcast. Retrieved from http://www.seniorrehabproject.com/srp/patient-perspectives-lisa-maczura

Case Study: Allie Calhoun

In class today, we are discussing dementia and my classmate, Rachel, presented the story of Allie Calhoun.  Allie is one of the main characters in the movie the Notebook.  Allie was diagnosed with Alzheimer's disease and she discussed how occupational therapy might help her and her family.  An occupational therapist might focus on decreasing confusion and panic, increasing education for caregivers, increasing routines, and increasing participation in meaningful activities.  Meaningful activities might include painting to music or cooking a meal, being these are activities that are important to her.  I was most interested to learn about sundowning syndrome, which is a phenomenon of a shift in mood around sundown in patients with dementia.  You can see Allie experience this when she has a panic attack about being confused in the movie.  It is important to not only provide treatment for the patient but also to provide resources and suggestions for the caregiver.

Case Study: Bradley Walker

I did my case study on a guy named Bradley Walker.  Bradley is a country music singer. Bradley was born with congenital myopathy,  a form of muscular dystrophy. His diagnosis is non-progressive so he has been able to live a full life. He was diagnosed at birth and has been using a wheelchair his whole life. He dreams of being a famous singer so he is working around his muscle weakness in order to achieve his dreams. In my study, I focused on creating goals that that would help him gain independent living and mobility via a modified van. Mainly, I looked into ways that to work with this disabilities to help him accomplish the occupations and roles he deemed important.

Bradley said, "I’ve never questioned the hand I was dealt. If I hadn’t been dealt this hand, I might not have been given the gift of music that I love so much, and I wouldn’t be singing bluegrass to people. So I wouldn’t change a thing." This struck me because his occupation of singing was more important to him than his ability to walk. I think this is a key lesson for me as a future occupational therapist to learn. Sometimes helping people gain an occupation means so much more to them than their functional ability.

Neuro note 3: Transfatty Lives

For this neuro note, I chose to watch a film that was suggested in class along with our discussion of Amyotrophic Lateral Sclerosis (ALS).  I watched a documentary film by Patrick O'Brien called "Transfatty Lives" that shows first hand Patrick's battle with ALS.

This film was directed by Patrick as his disease progresses.  The film begins by showing Patrick as a healthy film maker with a lot of life ahead of him.  When he was diagnosed with ALS, he turned the camera on himself and began filming parts of his journey.  Throughout the film, he goes from walking independently, walking with a walker, riding in a wheelchair, to bed-bound.  After he was diagnosed, he met a girl that became his girlfriend and together they had a child named Sean.  His son becomes his motivation to live and to continue working with film and video. Patrick's condition declined throughout the movie to the point where he had to chose whether to be put on a ventilator.  This was a hard choice because it would prevent him from speaking but he decided to continue living for his son.  Having the ventilator in resulted in part of the movie being narrated through the computer voice of Patrick.  Patrick's mind is fully intact while his body is crippled.  I was impressed by his statement about this disease maybe being an good thing because it sent him on an inner journey of himself.

I thought this film was so unique because it was done by someone actually experiencing ALS.  It was hard not to experience the emotions he felt.  I learned so much from this movie, from the many physical struggles he faced to the emotional loneliness he experienced.  His attitude when he was first diagnosed and during the earlier stages, he was so positive about his disease and was active in doing what he loved and advocating for a cure.  It was sad to see this happy guy sit in a nursing facility with a ventilator in the later stages of ALS being so lonely.  I felt so much joy for him as he was transferred to the facility for those with ALS and he knew he would not be lonely anymore. Patrick is still alive today, 12 years after being diagnosed with ALS, and what a journey! It is inspirational to see him to continue to do the videoing and editing that he loves, even in the face of impossibility.

I am so glad that he made this film to really bring awareness to his condition but it also encapsulates him as who he was and who he is in his mind and not as simply a ventilated ALS patient.

Please go watch "Transfatty Lives". You will be glad to have gained incite into ALS. It can be found on Netflix!

O'Brien, P., Dupree, M., Green-Dove, A., Hallinan, D., & Mohiuddin, M. T. (Producers). O'Brien, P. (Director). (2015, April 16). Transfatty lives [Motion Picture]. United States of America: Handsome Cargo.

Case Study: Heather Alimossy (Huntington's disease)

Heather is one of the people in the movie "Alive and Well" about Huntington's disease.  Her mother and her brother both have Huntington's so she was screened for Huntington's disease at age 19 and she has the gene for it.  She has not begun to show symptoms yet but she is preparing her life for the symptoms to come.  I think this is an interesting position to be in, to know the effects of the disease is coming but to be healthy now.  Her goals will need to be preparatory methods in order to decrease the effects of the disease and symptoms.

As Foundations class ends

As I reflect on my Foundations of Occupational Performance class, I can see how much I have learned this semester from this course alone.  I feel like I really have an understanding of what occupational therapy is, its history, and how occupational therapists think.  I remember after the first week of this course, going home and telling my husband that this class truly made me excited to be an OT.

I have tried to define occupational therapy in the past for others and for myself and not really known the exact answer.  Now, after this course, I feel I can adequately define and explain what occupational therapy is and my excitement for my future career. It feels good to know I have this base of knowledge that can build upon. I felt we touched on many topics that I will remember for the rest of my life.  I am glad for the set-up of this course and how it facilitated my learning.  I really do feel like I am well on my way to being an occupational therapist!

Case Study: Joseph Heller

Today in class, we discussed Joseph Heller and his struggle with Guillain-Barre syndrome (GBS).  His case was somewhat rare because it did not happen after a respiratory or a viral GI infection but it just spontaneously occurred.  His first symptoms did not begin in his legs and work up like most cases but instead it started in his core and worked outward.  His symptoms began with muscle weakness and he struggled with stepping and grasping with his hands.  When he was diagnosed, he was in the middle of writing his fourth book and later wrote a book about his experience with this condition called "No Laughing Matter".  It took him about two years to recover from GBS.