Author
Monika Tempel, as appeared in Alpha1 Journal 1/2023.
Actually, being an ideal patient is so simple: Read the guidelines to find out what has been proven effective for a given illness, implement the self-management recommendations, thereby taking responsibility for positively influencing the course of the disease and improving well-being. But unfortunately, that's usually easier said than done and so often sounds like "sweat and tears"...
What the guideline recommends
The most significant manifestation in homozygous Alpha-1 patients is chronic obstructive pulmonary disease (COPD). It is therefore advisable for individuals with Alpha-1 to familiarize themselves with the recommendations of the National Care Guideline COPD (NVL COPD 2021) [1].
In the chapter on non-drug therapies, you will find, among other things, the following strong positive recommendations:
- Respiratory physiotherapy
- physical activity
- psychosocial interventions
A deeper dive into these recommendations reveals demonstrably helpful interventions. Unfortunately, the numerous suggestions for practical implementation often sound technical and tedious.
The following explanations aim to show ways in which these recommendations can be implemented in a playful yet effective manner. To this end, I will present a demonstrably effective approach from the field of creative therapy for each of the evidence-based positive recommendations of the NVL COPD (National Guideline for COPD).
Are you open and ready for this? Because openness and readiness are the basic prerequisites for taking the first step towards commitment.
Lip brakes with pleasure
Under the heading of respiratory physiotherapy, the NVL COPD recommends self-help techniques such as pursed-lip breathing and breathing-easing body positions.
These self-help techniques can be put into practice effectively, permanently and enjoyably, with programs such as Singing for Lung Health (SLH) or in a choir of the breathless.
What has been scientifically proven about the benefits of singing for the lungs [2, 3]:
- Singing improves quality of life (physical component in the SF-36 questionnaire) and the function of the respiratory muscles.
- A recent study also demonstrates positive effects of a 10-week SLH program on the 6-minute walk distance.
- Furthermore, the choir members confirm that they find participation in the SLH program to be a pleasant leisure activity.
- No unpleasant side effects have been reported.
- A low dropout rate (only about one fifth) suggests high acceptance and satisfaction among participants.
Practical suggestion: In light of these proven positive effects, wouldn't it be an appealing idea for an Alpha-1 patient to look out for a choir of the breathless or to found a singing group for the lungs with other affected individuals?
Onto the parquet floor for more breath
Physical exercise is recommended as the first non-pharmacological measure in the National Care Guideline for COPD. Encouragingly, the guideline takes into account that patients often experience inhibitions and anxieties that prevent them from incorporating physical activity into their daily lives. These barriers "should be actively addressed and, if necessary, solutions sought.".
One possible suggestion for individually suitable physical activity and a corresponding attractive solution could be, for example, a playful offering such as creative dance (e.g., within the framework of pulmonary rehabilitation).
What advantages does a movement program combined with creative dance (PT+KT) offer compared to standard physiotherapy (PT)?
A recent randomized controlled trial [4] shows astonishing results:
- A movement program combined with creative dance (PT+KT) not only improves lung function and peripheral muscle strength, but also posture stability and sense of balance.
- Furthermore, improvements in physical performance (6-minute walk test), cognitive performance (MoCA score) and in the CAT (COPD Assessment Test) are more pronounced in the PT+KT group than in the standard physiotherapy group.
- The fact that no participant dropped out of the eight-week movement and dance program is interpreted by the authors as a sign of high motivation and enjoyment of this form of physical training.
As early as 2019, a research team [5] recommended, based on the promising results of a feasibility study on creative dance for COPD patients: „Let’s Boogie!“
Practical advice: Are there any arguments against a little dance now?
(As an aside: I've been told that the Alpha 1 anniversary information day in 2023 was practically a direct answer to my rhetorical question: Apparently, people danced until the floorboards shook! Too bad I couldn't join in.)
Sidney De Haan Research Center for Arts and Health
Hospitalnews.com
Live, write, breathe!
What does therapeutic writing have to do with the NVL COPD? While the so-called bibliotherapy (therapeutic reading and writing) is not explicitly mentioned under the heading of psychosocial interventions, reference is made to the positive effects of psychological methods on depressive symptoms and anxiety as comorbidities of COPD.
Since anxiety and depression are common in COPD patients and affect the course of the disease and the prognosis, the importance of psychological support services is obvious.
In cases of pronounced accompanying mental health conditions, specific therapeutic measures are of course necessary (specialized psychotherapy, psychosomatic medicine, psychiatry). However, the NVL COPD (National Guideline for COPD) points out that often low-threshold psychosocial interventions are sufficient (e.g., verbal interventions, relaxation techniques, stress management techniques).
Therapeutic writing represents an effective offering in the field of low-threshold psychosocial interventions.
As early as 1999, a randomized intervention study demonstrated the positive effect of therapeutic writing on lung function in stressed asthma patients [6].
In the Life of Breath project (2015 to 2020), Elspeth Penny and Alice Malpass worked with a letter to the breath. The participants in the group program showed surprisingly positive effects on their physical and mental quality of life [7].
I have slightly modified the letter-writing method as a self-help offer and presented it in the Alpha-1 Journal 2022/2.
Whether as a motivational aid in cases of general lack of motivation, as a distractor for anxieties, or as a calming tool for stress reduction: Therapeutic (letter) writing is an effective method – if you commit to it…
Leo E. Kröll, an Alpha-1 patient, has embraced the method and written an impressive letter to a historical figure:
Dear Mrs. Roosevelt,
They are said to have told you, "Do one thing every day that scares you.".
Looking at your life, I imagine there have been things that frightened you, yet you tackled them nonetheless, or perhaps even because of that. Whether this was the secret to your fulfilling, interesting, and varied life, I cannot say. But I can certainly imagine it was.
Allow me to slightly modify this motto, because I have shaped and continue to shape a significant part of my life with it: "Do one thing every day that you find unpleasant or annoying.".
This approach has served me well so far. Whether opening my eyes in the morning, starting my workday, or attending private or professional meetings, I've always tried to tackle the things that seemed bothersome or unpleasant first.
Because then they were off the table, they no longer weighed on my mind, and I could and can go to the remaining tasks free and with strength.
I would add to this motto for the day the attitude "What's done is done".
Procrastinating and putting things off doesn't accomplish anything, and the mountain of unfinished tasks just keeps growing. Therefore, the most annoying and unpleasant tasks go right to the top of the pile of daily chores, and then, once they're done, I can tackle the remaining obligations with enthusiasm.
I cannot say whether this is entirely consistent with the meaning of the motto attributed to you, but I think it goes in the same direction.
I would have liked to discuss this with you, but unfortunately that's not possible right now. Perhaps another time. In that spirit, thank you for your work and contributions.
With warmest regards, Leo
Thank you so much, dear Leo E. Kröll, for the beautiful text and for your permission to reprint it with attribution. Perhaps your work will encourage other "alphas" to try one of the creative methods presented and entice them: into the choir, onto the dance floor, or to pick up a pen.
There may be other creative methods with positive effects on physical and mental well-being. A recent study on harmonica playing in COPD patients presents promising results [8]. Furthermore, there are no limits to the imagination when it comes to trying combined creative approaches.
The practical conclusion is: respiratory physiotherapy, physical training and psychosocial interventions are all the more effective the more they are done incidentally and with enjoyment!
Monika Tempel wishes you openness and a willingness to make a decisive and sustainable commitment.
Bibliography:
[1] https://www.leitlinien.de/themen/copd/2-auflage
[2] Fang, X., Qiao, Z., Yu, X., Tian, R., Liu, K., & Han, W. (2022). Effect of Singing on Symptoms in Stable COPD: A Systematic Review and Meta-Analysis. International Journal of Chronic Obstructive Pulmonary Disease, 2893-2904.
[3] Kaasgaard, M., Rasmussen, DB, Løkke, A., Vuust, P., Hilberg, O., & Bodtger, U. (2022). Physiological changes related to 10 weeks of singing for lung health in patients with COPD. BMJ Open Respiratory Research, 9(1), e001206.
[4] Kaya, M., Gurses, HN, Ucgun, H., & Okyaltirik, F. (2023). Effects of creative dance on functional capacity, pulmonary function, balance, and cognition in COPD patients: A randomized controlled trial. Heart & Lung, 58, 13-20.
[5] Wshah, A., Butler, S., Patterson, K., Goldstein, R., & Brooks, D. (2019). “Let's Boogie‘: Feasibility of a dance intervention in patients with chronic obstructive pulmonary disease. Journal of cardiopulmonary rehabilitation and prevention, 39(5), E14-E19.
[6] Smyth, JM, Stone, AA, Hurewitz, A., & Kaell, A. (1999). Effects of writing about stressful experiences on symptom reduction in patients with asthma or rheumatoid arthritis: A randomized trial. Jama, 281(14), 1304-1309.
[7] Penny, E., & Malpass, A. (2021). Dear Breath: using story structure to understand the value of letter writing for those living with breathlessness–a qualitative study. Arts & Health, 13(1), 20-34.
[8] Lewis, A., Conway, J., Middleton, J., Startup, CK, & Wyatt, J. (2022). Playing the harmonica with chronic obstructive pulmonary disease. A qualitative study. Chronic Respiratory Disease, 19, 14799731221083315.
