Embed Size (px)
Citation preview
Is Purpose the Missing Piece?Assembling Puzzles as Recreation and Therapy
in an ALS Patient
Esther-Lee Marcus, Arkadiy Sheynkman, Shlomit Glick, Sharon Karni
Chronic Ventilation Unit, Herzog Hospital, Jerusalem, Israel
“He who has a ‘Why’ to live for can bear almost any ‘How’.”
Nietzsche
Purpose in Life
One particularly important component of human flourishing has been defined as ‘a sense of purpose in life’. This concept is taken from humanistic psychology; it is demonstrated in the philosophical writing of Viktor Frankl.
Boyle PA et al. Psychosomatic Medicine 2009; 71:574.
Viktor Frankl
The survivor of a concentration camp, Viktor Frankl noted that even when subjected to inhuman suffering, people can find life meaningful: what aided them in surviving was having a purpose in life.
“Life is never unbearable by circumstances, only by lack of meaning and purpose.”
Viktor FranklMan’s Search for Meaning
“We must never forget that we may also find meaning in life even when confronted with a hopeless situation, when facing a fate that cannot be changed. For what then matters is to bear witness to the uniquely human potential at its best, which is to transform a personal tragedy into a triumph, to turn one's predicament into a human achievement. When we are no longer able to change a situation - just think of an incurable disease such as inoperable cancer - we are challenged to change.”
Viktor FranklMan’s Search for Meaning
Purpose in LifeIn various studies, purpose of life has been associated with:– Happiness– Satisfaction– Self-esteem– Less disability1
– Less cognitive decline2
– Lower mortality rate3
1 Boyle PA et al. Am J Geriatr Psychiatry 2010:18:1093; 2 Boyle PA et al. Arch Gen Psychiatry 2010;67:304; 3 Boyle PA et al. Psychosomatic Medicine 2009; 71:574.
Purpose in Life
Purpose in life may play an important role in surviving a chronic debilitating disease.
One may influence purpose in life by various interventions.
Aims of Presentation
To present a case of a patient with severe progressive disability due to amyotrophic lateral sclerosis - ALS - in whom we believe recreational therapy by assembling puzzles gave her meaning and purpose in life.To review the role of recreational therapy in maintaining quality of life and palliative care of ALS patients.
Case report
o A 68 year-old widowo Her hobbies included handicrafts and
jewelry-making.o She immigrated to Israel at the age of 60.o Two years later she was diagnosed with
amyotrophic lateral sclerosis (ALS).
Case report
o Despite progressive weakness and whilst still at home, she began to take an interest in working puzzles of 500-1000 pieces, since the fine motor ability in her hands was preserved.
o At the age of 65, she came to need mechanical ventilation and was transferred to the chronic ventilation unit at Herzog Hospital.
Case report
o In the ward she needed mechanical ventilation most hours of the day, and with progression of the disease, was connected to the respirator 24 hours a day.
o Initially she was partially mobile, but within a
short time she was confined to bed or chair.
Case report
o In addition to problems related to coping with her mounting disability, she had to cope with problems of communication because she spoke neither Hebrew nor English.
o A single staff member became attentive to her and became her interpreter to the medical staff.
Case reporto The patient occupied herself many long hours
of the day putting together puzzles on a wooden board on her bed.
o Sometimes staff members accidentally knocked the board over, and she had to start a part of the puzzle over again.
Case report
o After she almost completed a particularly difficult puzzle and was about to reach the climax to insert the last piece this piece could not be found.
The Missing Piece
Case reporto An email to the manufacturer of the puzzle elicited a
positive response, and they sent a new identical puzzle.
Case reporto In order to find the missing piece, the patient had to put the
same puzzle together from the beginning.o In response to the company’s gesture, she sent a thank-you
note and told them her story, and the company sent 10 new puzzles as a gift !
o Despite the decline in her fine motor skills, she did not give up assembling puzzles and continued to work, using a toothbrush and other aids to help her.
Case reporto Some of the completed puzzles have been hung in various
places in the hospital and were a source of pride and joy of herself and her family.
Case report
o Unfortunately, last year there was a gradual worsening in her general condition, and she has been unable to work on the puzzles.
o Since then, her spark of life has dimmed; she barely responds and is receiving life-support and palliative treatment.
Discussion
We hypothesize that having a purpose in life gave her a goal and motivation, arising in the morning and feeling fulfillment upon completing a puzzle. It might have preoccupied her, thereby reducing stress and anxiety. Puzzle assembly empowered the patient by enhancing her previous interest and capabilities in handicraft skills.The loss of her final capacity to function might have been the “coupe de grace” for her cognitive abilities as well.
Recreational Activities in ALS Patients
Case Studies
Rahamim Melamed Cohen
o An educator, living in Jerusalem. He was diagnosed with ALS in 1994 at the age of 57, but his condition has deteriorated so much so that he has become totally paralyzed and communicates only by using his eyelids.
o Throughout the years of his illness, Rahamim
has written nine books in fields such as poetry, literature, education, counseling, Judaism, and philosophy.
http://www.melamed.org.il/paintings.html
Rahamim Melamed Cohen
o In the year 2007, Rahamim began painting, using a computerized program which follows his eye movements. He works mainly with Photoshop. Choosing the theme such as “With a Blink of an Eye" reflects the significance Rahamim attributes to the eyes, which are at the moment the center of his life.
o The amazing paintings, the genuine ideas, the varied styles, and the control over the different painting tools leave the spectator agape.
ותפקחנה עיני שניהם וידעו כי עירמם הם, ויתפרו עלה תאנה ויעשו להם חגרת:
בראשית ג, ז
Then the eyes of both of them were opened and they realized that they were nakedand they sewed together a fig leaf, and made coverings for themselves.
Genesis 3:7
ן כזרע גד הוא ועינו כעין והמהבדלח:
במדבר יא , ז
Now the manna was like coriander seed, and its color like the color of bdellium. Numbers 11:7
“I feel as if my entire body is sunk in sand, and only my head appears above the
ground, and my eyes look around as if saying: What a beautiful world.”
“Most people paint with their hands, some use their toes, others use their mouths but I paint with my eyes.”
Rachamim Melamed Cohen
http://www.reuters.com/article/2008/06/04/us-israel-disability-artist-idUSL0170689620080604
Margaret McCament Alexandero Alexander, a 64-year-old artist, was diagnosed with
ALS.o Alexander describes the disease as “Hell. It’s awful,
it is a continuous, ongoing loss of yourself.”o As she wages her fight against the disease, she finds
relief in something she’s known most of her life: art. o Her original technique differed greatly from the
thick stroke paintings she developed after ALS symptoms first presented.
• Run Until Tackled: ALS and Me. Art Therapy http://alsandme.blogspot.co.il/2010/11/art-therapy.html
• Walsh J. Painting through pain. http://www.record-bee.com/ci_20430145/painting-through-pain
Margaret McCament Alexandero Initially, she relied on both hands to complete her
art work but with disease progression, shifted to left handed only and when she lost the ability to grip steadily with either hand, used a wrist brace to hold the brush in place.
o Her work has been exhibited in the ‘ALS and Me” exhibition including:o Self-portraits depicting reaction to the diseaseo Bucket list – “Places I want to go or that I have gone, of
things that I have done or want to do.”
“It allows me to face a challenge and succeed.. The disease says, You can’t do this, and I say Oh, yes I can, just watch me.”
Self-portrait: Diagnosis Self-Portrait
with Hands
Self-portrait Series
Self-portrait with Race Day Hat
Bucket List #1
Self-Portrait with Glacier Bucket List #3
Bucket List
“The very best thing about these paintings, fun or serious, art or not, lies in the doing. Pushing paint around, playing with color, … even cleaning my brushes provides great physical therapy. And trying to give voice to my chaotic thoughts is turning out to be the best psychological and spiritual therapy…”
Michael Boughero Michael Bougher, a former project control systems
designer, received the diagnosis of ALS in July 1998.o With progression of disease, he became completely
paralyzed from the neck down, and was connected to the ventilator.
o After being inspired by the Digital Photo-Realist Artist Bert Monroy, he started occupying himself with digital painting.
• http://mikebougher.com/• Bougher M. Reasons why I am grateful to ALS.
http://www.alsusa.org/publications/als/als13_10.html.• Quitero A. http://alsn.mda.org/article/equipment-corner-june-
2007
Michael Bougher
o The paintings have taken from 8-200 hours a piece to complete.
o Initially with the aid of computer advanced technology, he used his shoulder and arms and later on, the paintings were created by movements of the head.
Life Energy
Kindness
..“I’ve learned that even something as devastating as ALS can’t crush the
human spirit unless you let it”.
“…It occurred to me that an ALS diagnosis was not the end of my life. I realized that if I got a feeding tube and a ventilator, I could live a lot longer, but quality of life would be an issue. I must surrender to that which I had no control (my body’s deterioration) and begin to build on that which still had great growth potential (my mind and spirituality). I could spiral downward into misery, or use my circumstances as a catalyst for mental and spiritual expansion. I had a choice !”
Ben Coheno Ben Cohen was a 46 year-old American citizen,
living in Japan.o He was a distinguished potter.o In 1989 he was diagnosed as suffering from ALS. o Since he could move only his eyes and mouth,
he designed his artwork on the computer and his wife, Reiko served as his hands.
o After his death, Reiko was determined to continue her husband’s legacy and continued with his artwork, making pottery.
Norris FH, Mitsumoto H. (1991) Amyotrophic Lateral Sclerosis: A Comprehensive Guide to Management. New York: Demos Publications
Reiko Cohen 1992
Tony Quan Tempt Oneo Tony Quan, tag name Tempt One or Tempt1, is an
American graffiti artist who began creating in Los Angeles in the early 1980s.
o In 2003, at the age of 34 he was diagnosed with ALS and by 2005, he was fully paralyzed and bedridden.
o With a special computer software which detects eye movements, he continued with his art with the aim of raising awareness of the disease.
o His work was displayed in various exhibitions, and the proceeds from the sales go directly to an ALS foundation.
http://estria.blogspot.co.il/2009/10/tempt-one-creates-art-with-only-his.html
Erin Brady Worsham
o Erin Brady Worsham is a 44-year-old artist was diagnosed with ALS in 1994.
o She creates digital paintings by the eye movements.
o Every piece of art takes about 250 hours to create.
o In her paintings, she depicts her reactions and feelings regarding her new situation.
http://www.incrediblepeople.com/cover_story.htm
Erin Worsham’s “Breathtaking Metamorphosis” depicts her new life with a ventilator.
Worsham’s “Big Wheels Keep on Turning” treats us to a surprising perspective.
In Worsham’s “Mind, Body, Spirit” her wheelchair nearly fades away into a vibrant background of color and form – just as it should.
“Because I can no longer spontaneously talk to people, my artwork has become a means of communicating my thoughts and feelings”
“In addition, it identifies me as an artist, rather than an ALS patient. Many people look at my paralyzed body and think there’s nothing going on inside. My art shouts to the world that I am very much alive and kicking within! Most of all, art gives my life focus and purpose.”
Kathy Wechsler K. The artist inside. http://alsn.mda.org/article/artist-inside
Working with Arts as Personal Metaphors in ALS patients
Expressive Arts Therapy
Whalen D. Meeting your metaphor: The use of the arts and the imagination with dying persons. In: RCP Magniant . Art Therapy with Older Adults: A Sourcebook. Springfield: Charles C Thomas Publishers
Person Creating his Own Metaphor
o Norm, a painter and sculptor all his life, was diagnosed with ALS.
o He directed a group of artist friends to cut down a living apple tree from his backyard, strip off the bark, and lay it down on the floor of the studio.
o The recumbent shape was decorated with plaster models of motor neurons that were breaking apart.
o In this installation, he and his family and fellow artists mourned their collective losses.
o Rita, who in a state government, was diagnosed with ALS.
o During a group expressive arts session, Rita chose the flamingo as an animal she felt attracted to.
o She liked how flamingos could stand in the mud and yet at the same time be high above everything, an image of being immersed in the “mud” of ALS, yet able to maintain a healthy distance, a longer view that helped put things into perspective.
Rita - Flamingo
o Rita maintained the “flamingo essence” until her death.
o Rita’s metaphor - the flamingo - became a window into her “way” of copying with the disease.
o A way that was both realistic, manifested by her early decision to have a feeding tube and accepting adaptive technology, and at the same time imaginative, a touch of riding high above on the long legs of the fairy tale.
The House as a Metaphoro Eileen, a 52 years-old woman with ALS, was treated in a
hospice. o During an art therapy session she drew a house, a
square with a triangular roof and three windows: two upstairs and one downstairs. Near the house she drew a garden.
o She spoke to the therapist about the house she had to leave, explaining that she felt that the house was now empty and cold, and that the garden was not taken care of. She then drew curtains in the downstairs window so that people on the outside would think that life inside was continuing as usual.
Coote J. (1998). Getting started, Introducing the art therapy service and the individual’s first experiences. In: M. Pratt & M.J.M. Wood Art therapy in Palliative Care. The Creative Response. London: Routlege.
The House as a Metaphor
o This picture was a metaphor of Eileen herself. She told the therapist that none of her family was able to acknowledge her illness and imminent death and refused to talk about it. Like the house with the curtains drawn, she had been unable to let anyone outside know what was going on inside.
Rosemaryo Rosemary, who had recently been diagnosed with
ALS, had expressed a wish to “paint her feelings”o She communicated by an electronic writer.o During art therapy sessions she painted various
images expressing her thoughts and reactions to the changes in her life.
o Since she had lost the ability to speak, her paintings became her “voice”.
Wood M.J.M. (2010)The contribution of art therapy to palliative medicine. In: Hanks G et al.(Eds). Oxford Textbook of Palliative Medicine. Oxford: Oxford University Press,pp.243-9.
Rosemary• Soon afterward, she began painting alone in her
room. The paintings depicted gardens resembling images from the “Arabian Nights”.
• Those pictures were a source of pride, and staff and other patients would come to see them.
• With disease progression and deterioration in her functioning, fear, grief, anger, and despair appeared in the images.
• Expressing her feelings through art helped her cope with the disease.
Working with an artist-client at the end of lifeo Lisa Schaewe, an artist and art therapist, describes the
case of Roland, an artist who had been diagnosed with ALS.
o Lisa met Roland near the end of his life.o Roland had previously declined most of the assistance
and services offered to him. o Lisa conducted with him an in-depth dialogue about art
and the role and meaning of art in an artist’s life. o Lisa describes how providing an opportunity to make
contact with art materials can open a door to communication.
Schaewe L. Some kind of artist. Art Therapy: Journal of the American Art Therapy Association 2011;28:37-8.
“He once mentioned the modeling clay he used in the early stages of developing a sculpture. I brought a lump of the clay……..I held it close to his face so he could take in the familiar scent. I pressed the clay firmly into his palm and wrapped his finger about it tightly……It was the last time I saw him. When I returned a few days later, the nurse told me that he had passed away that night, the clay still in his hand.”
Quality of life of patients with ALSSeveral studies have demonstrated the quality of life in patients with ALS does not correlate with measures of physical function, and does not decline over time despite progression of the disease. Psychological, existential, religious, and spiritual factors and social support systems play a major role.Some patients with ALS, despite being connected to the ventilator and dependent on others, report a high quality of life.Family members and other caregivers frequently underestimate the quality of life of the patients.
Simmons Z. The Neurologist 2005;5:257.Lule D et al. Dtsch Arztebl Int 2008; 105(23): 397–403
In conclusionVisual art therapy can be used in ALS patients along the continuum of disease.Therapy can apply either “Low Tech-High Touch” modalities or sophisticated technology-assisted devices.It may be combined with other forms of art therapy, such as creative writing and music therapy.The form and content of therapy should be tailored to the specific patient according to his previous and current interests and the stage of the disease. Increasing the quality of life of patients should be the major goal.
Art Therapy
inALS
Purpose in Life
Meaning
Assistive Technology
Cognition
Fine Motor Skills
