Maintaining health in Alpha-1: Conclusions from the 2018 questionnaire
Author
Michaela Frisch, Scientific Advisor
Alpha1 Germany's motto for 2018 was resilience. This means strengthening one's own resources to avoid experiencing any (psychological) health consequences despite negative external influences. Accordingly...
Individual resilience represents one's own capacity to resist and maintain one's health, in addition to medication-based treatment options. Besides family and friends, this includes physical activity, pulmonary exercise, mobility, rehabilitation, membership in the self-help organization Alpha1 Germany, and participation in regional group meetings.
The questionnaire used at the 2018 information day in Göttingen also focused on these areas. This yielded a few results that warranted closer examination and numerous discussions, including at the group leaders' meeting.
The 2018 meeting in Darmstadt brought with it several questions focusing on the topic of sports, specifically pulmonary exercise. The extremely encouraging news was the survey result regarding the activity and athleticism of the Alpha1 members.
This result definitely deserves applause, with the added comment: keep it up!! Likewise, the answers to the question about the frequency of exercise:
Discussions then arose regarding the questions directed solely at those affected by PiZZ: Do you attend a pulmonary exercise group?
There are many possible interpretations when searching for the reasons why more affected people do not participate in pulmonary exercise.
One explanation certainly lies in the clinical picture of Alpha-1: not every Alpha has a correspondingly affected and restricted lung function, so participation in a pulmonary exercise group to carry out personal sporting activity is not really useful for every Alpha.
If you wish to participate in pulmonary exercise, your general practitioner or pulmonologist can prescribe pulmonary exercise with 50 sessions over 18 months or 120 sessions over 36 months using form 56. The doctor's prescription must then be submitted to your health insurance provider for approval and reimbursement. If your doctor has not already recommended a group, including its address, when issuing the prescription, the database on the AG-Lungensport website (www.lungensport.org) with over 1,500 groups now offering support in the search.
Unfortunately, not all existing groups have yet registered in the database. In addition to local self-help groups, health insurance companies can also assist with providing contact information. Compared to cardiac rehabilitation, there is still no comprehensive network of pulmonary rehabilitation groups; there is much work to be done in this area. Many group activities also take place during the day, making participation difficult for working people.
When asked about problems with the approval process, the result was pleasing:
To avoid problems in the future, here are a few tips for new or subsequent prescriptions. Often, you can prevent problems altogether by using the correct form. It's available on the Alpha1 Germany website. Unfortunately, errors in filling out the form are often a reason for rejection, so here's an example of how it should look:
Should there still be problems with the approval: don't be afraid to file an appeal! It's worthwhile in most cases. The only important thing is:
- Do not use pre-written letters
- The person affected should always formulate it individually and in their own words (however, the instructors, doctors or your [other contact person] can offer assistance). Advisor for pulmonary exercise under Frisch@alpha1-deutschland.org)
- formulate the psychological component of group dynamics
- It should never be called an extension of pulmonary rehabilitation; it must always be called a new or further prescription.
Another way to strengthen one's own resources and stabilize health is rehabilitation. Here, too, the result was unfortunately surprising, given that not everyone affected has yet taken advantage of the opportunity for stabilization and knowledge transfer offered by a rehabilitation program.
Participation in rehabilitation:
Rehabilitation is a valuable tool for developing a tailored therapy program to address individual needs. In addition to physical training and educational workshops, it can promote long-term behavioral changes towards a more conscious and healthier lifestyle, strengthening personal resources. Individual disease management is reinforced through specialized and appropriately dosed exercise therapy, combined with physiotherapy and physical therapy, nutritional counseling, psychological therapy, social and medical support, and, if needed, smoking cessation. The program is rounded out by targeted, indication-specific lectures and workshops, as well as corresponding aftercare recommendations. So, take advantage of this opportunity!
In conclusion, I can recommend: stay active, do something, stay motivated, do things you enjoy and thus strengthen your personal resilience beyond 2018.
One person affected by the illness once said: "The illness always comes along, but I don't have to stay home with it." And that's why the Alpha1 motto for 2019 is: get off the couch and into life! See you at the members' meeting and information day in Göttingen in April 2019.
Michaela Frisch
Scientific Advisor
St. Blasien Lung Clinic GmbH - Therapy management, pulmonary exercise, self-help, long-term oxygen therapy
