Sandra's Story: An Artist Living with ALS

Mayo Clinic

30 Dec 201903:19

Summary

TLDRSandra Murphy, a lifelong artist and performer, was diagnosed with ALS in 2013 at the age of 49. The disease, which affects motor nerve cells, gradually robbed her of her physical abilities, leading to dependence on a ventilator and feeding tube by 2016. Despite her physical limitations, Sandra's creativity thrived as she adapted her painting technique, choreographing her art through footwork and the assistance of a friend. Her paintings reflect the progression of her ALS and her enduring spirit, showcasing a remarkable resilience and the freedom she finds in her art despite the lack of a cure.

Takeaways

🎨 Sandra Murphy Pack is an artist and performer who has recently taken up footwork painting.
⏳ She first noticed symptoms of ALS in 2013 at the age of 49, experiencing difficulty raising her left arm.
🏥 Amyotrophic lateral sclerosis (ALS) is a severe, debilitating disease that affects motor nerve cells, leading to a gradual loss of function.
🤲 By 2016, Sandra had lost the use of both her arms and hands and became dependent on a ventilator and feeding tube.
🌟 Despite her physical limitations, Sandra's creativity and spirit remained strong, as she continued to create art.
👣 Sandra's painting process involves instructing a friend, Sarah, on where to place her foot to apply paint, symbolizing a unique form of choreography.
🖼 The paintings reflect the progression of Sandra's ALS, with each piece capturing a moment in her physical ability.
🌈 Her art represents a form of freedom and expression that transcends the confinements of her disease.
👩‍⚕️ Dr. Oscarson, an expert on ALS, emphasizes the importance of research for finding a cure, though there is currently no treatment available.
🌟 Sandra's story is one of resilience and positivity, as she continues to find joy and meaning in her art despite the challenges of ALS.

Q & A

What is Sandra Murphy's profession?
-Sandra Murphy is an artist and performer.
When did Sandra Murphy first notice her symptoms of ALS?
-Sandra Murphy first noticed her symptoms of ALS in 2013.
What is Amyotrophic Lateral Sclerosis (ALS)?
-Amyotrophic Lateral Sclerosis (ALS) is a severe, debilitating disease that affects motor nerve cells, leading to a gradual loss of different functions and increasing dependence on others for help.
How did Sandra Murphy adapt to her physical limitations due to ALS?
-Despite losing the use of her arms and hands, Sandra Murphy adapted by instructing her friend Sarah on what paint to use and where to place her foot, effectively becoming the choreographer of her own artistic expression.
What does the term 'footwork' refer to in the context of Sandra's art?
-In the context of Sandra's art, 'footwork' refers to the method she uses to create paintings by instructing someone else on where to place their foot to apply paint, as she is unable to use her hands.
How does Sandra's art reflect the progression of her ALS?
-Sandra's paintings reflect the progression of her ALS in that they are ever-changing, mirroring her physical abilities as the disease progresses.
What is the current state of Sandra's ALS in terms of treatment?
-There is no cure for ALS, and Sandra is dependent on a ventilator to help her breathe and a feeding tube for nutrition. Treatment can help control the symptoms, but it does not halt the disease's progression.
How does Sandra feel about her art despite her condition?
-Sandra feels a sense of freedom through her art, stating that it allows her to not be confined by her disease.
What is the role of research in the context of ALS?
-Research is key in the context of ALS, as it is currently the only way to potentially find a cure or more effective treatments for the disease.
What is Sandra's attitude towards her challenges with ALS?
-Sandra is described as an amazing person who, despite her challenges, can still see the silver lining and make the most out of her living.
Who is Dr. Oscarson and what does he say about ALS?
-Dr. Oscarson is a doctor mentioned in the script who states that there is no cure for ALS and emphasizes the importance of research.

Outlines

00:00

🎨 Artistic Resilience Amidst ALS

Sandra Murphy Pack, an artist and performer, was diagnosed with amyotrophic lateral sclerosis (ALS) in 2013. Despite the disease's progressive nature, which led to the loss of use of her limbs and dependence on a ventilator and feeding tube, Sandra's creativity persisted. She adapted her art-making process, becoming a choreographer of sorts, directing her friend Sarah to apply paint according to her instructions. Her paintings evolved with her physical abilities, reflecting the progression of her ALS. Sandra's story is one of artistic resilience and the power of creativity to transcend physical limitations. Doctor Oscarson from the Mayo Clinic emphasizes the importance of research for finding a cure, though currently, treatments only help manage symptoms. Sandra's positive outlook and contribution to research are highlighted, showing her determination to make the most out of her situation.

Mindmap

Keywords

💡Footwork

Footwork in the context of the video refers to the unique method Sandra Murphy uses to create art despite her physical limitations due to ALS. It involves using her foot to apply paint and create artwork, showcasing her adaptability and creativity. The term is used to describe the physical act of painting with her foot, which has become her new form of artistic expression.

💡Amyotrophic Lateral Sclerosis (ALS)

ALS, or Amyotrophic Lateral Sclerosis, is a progressive neurodegenerative disease that affects nerve cells and leads to a gradual loss of muscle control. In the video, Sandra is diagnosed with ALS, which becomes the central challenge she faces. The disease is highlighted as it progressively impacts her physical abilities, yet her spirit and creativity remain undiminished.

💡Debilitating

The term 'debilitating' is used to describe the severe impact of ALS on Sandra's physical health. It emphasizes the disease's effect on her body, causing her to lose the use of her limbs and eventually requiring a ventilator and feeding tube. Despite this, Sandra's condition does not debilitate her spirit or creativity, which is a central theme of the video.

💡Ventilator

A ventilator is a machine that assists in breathing for individuals who cannot breathe on their own. In the video, Sandra becomes dependent on a ventilator to help her breathe due to the progression of her ALS. This device symbolizes the extent of her physical limitations but also her resilience as she continues to create art.

💡Feeding Tube

A feeding tube is a tube that delivers nutrition directly to the stomach when the individual cannot eat by mouth. Sandra uses a feeding tube for nutrition as her ALS progresses, further illustrating the physical toll the disease takes on her. Yet, the video shows that her reliance on such medical support does not hinder her artistic endeavors.

💡Choreographer

In the video, Sandra is referred to as a 'choreographer' in the context of creating her art. This term is metaphorically used to describe her role in directing the placement of paint on the canvas, despite her physical limitations. She instructs her friend on where to apply paint, thus 'choreographing' the artwork, which is a testament to her adaptability and creative control.

💡Progression

The progression of Sandra's ALS is a recurring theme in the video. It refers to the worsening of her condition over time, which is reflected in the changing nature of her artwork. The term is used to depict both the physical decline and the evolving style of her paintings, showing how her art mirrors her personal journey with the disease.

💡Independence

Independence is a key concept in the video, as it contrasts with the increasing dependence on others that Sandra experiences due to ALS. Despite her physical limitations, Sandra maintains a sense of independence through her art, which allows her to express herself and maintain a level of autonomy and control over her life.

💡Creativity

Creativity is a central theme in the video, highlighting Sandra's ability to adapt and find new ways to express herself artistically despite her physical challenges. Her creativity is showcased through her footwork paintings, which are a direct result of her innovative approach to overcoming the limitations imposed by ALS.

💡Freedom

Freedom, as mentioned in the video, is a concept that Sandra experiences through her art. Despite the physical confinements of ALS, her art provides her with a sense of liberation and self-expression. The term is used to emphasize that while her body may be limited, her mind and spirit remain free to create and explore.

💡Treatment

Treatment in the context of the video refers to the medical interventions used to manage the symptoms of ALS. Doctor Oscarson mentions that while there is no cure, treatment can help control the symptoms. The video implies that while treatment may not halt the disease, it plays a role in allowing Sandra to continue living and creating art.

💡Research

Research is highlighted as a critical component in the fight against ALS. The video suggests that ongoing research is necessary for finding potential treatments and, ultimately, a cure. Sandra's participation in research symbolizes hope and the collective effort to combat the disease, even if she may not benefit directly.

Highlights

Sandra Murphy Pack is an artist and performer who has recently taken up footwork.

In 2013, Sandra, an active mother of three, first noticed symptoms of ALS at the age of 49.

Amyotrophic lateral sclerosis (ALS) is a severe, debilitating disease affecting motor nerve cells.

ALS causes a gradual loss of functions, leading to increased dependence on others.

By 2016, Sandra had lost the use of both her arms and hands and became dependent on a ventilator and feeding tube.

Despite her physical limitations, Sandra's creativity remained strong, adapting her art to her condition.

Sandra instructs her friend Sarah on how to apply paint to create her artistic vision.

The paintings reflect the progression of Sandra's ALS and her changing physical abilities.

Sandra's art provides her with a sense of freedom despite her confinement to round-the-clock care.

There is currently no cure for ALS, and research is crucial for finding treatments.

Dr. Oscarson emphasizes the importance of research for the future of ALS treatment.

Sandra is a willing participant in research, hoping to contribute to future treatments.

Sandra's positive attitude and ability to find the silver lining in her situation are inspiring.

Vivien Williams reports on Sandra's story for the Mayo Clinic News Network.