Author
Leo E. Kröll, as published in Alpha1 Journal 2/2023.
Let's return to the Alpha1 information day held from May 5th to 6th, 2023 in Bad Wildungen. Those who were able to attend will confirm that it was a full, informative, and extremely helpful weekend. There were ample opportunities for information gathering, getting to know support services, and networking.
I would particularly like to highlight one offer that proved very helpful to me later on. I came across the Pneumo Factory information booth quite by chance and got into a conversation with the founders, Dr. Inga Jarosch and Tessa Schneeberger.
Both are research associates at the Research Institute for Pneumological Rehabilitation of the Schön Clinic Berchtesgadener Land/Philipps University Marburg and are active as speakers in the Working Group on Respiratory Physiotherapy, the Respiratory Therapist Training and the Heart LAG Training.
I was interested in the concept, and so I learned more about the Pneumo Factory. In short, it offers high-quality, non-drug treatment options for alpha-1 antitrypsin deficiency, delivered directly at home – under individual, professional guidance.
The aim is for the participant to become a competent manager of his illness by being provided with practical knowledge, respiratory physiotherapy self-help techniques and a training plan for strength and endurance training by a specialist, and to implement this independently in the long term.
The costs for the program are covered by CSL Behring
worn.
Unfortunately, the program wasn't yet offered in my state of Rhineland-Palatinate at that time, due to a lack of qualified staff. However, I left my contact information and put myself on the waiting list, as I was assured of a place in the program if staffing became available. To my delight, Pneumo Factory contacted me very quickly and put me in touch with Mr. Thomas Schmiediche, who would be guiding, supporting, and supervising me. He is a physiotherapist specializing in respiratory therapy and orthopedics. We met at my home shortly after our initial contact. He assessed my general condition and had me perform some exercises to establish a basis for future evaluations and assessments of potential improvements.
The therapist was a stroke of luck, as he was not only very personable but also highly competent and goal-oriented. I quickly discovered this, as he identified my shortcomings, weaknesses, and training needs in a short time. After more than an hour, he created a training plan for me, and we scheduled a video conference in two weeks.
I thought we were just talking. But even at this meeting, I was able to discuss my development, my misinterpretations, and my training plan with him.
I have a balance pad, a weight bench with various weights, and a stability ball. All of this equipment has been incorporated into my training. But none of that is necessary; a good workout can be achieved with just two water bottles, a towel, perhaps a resistance band, and your own body weight. Since I was already used to getting my aging body (I'm 73) moving every morning, I've integrated the exercises shown to me into my training program.
After further video calls, each of which provided new suggestions and helpful advice, we met again at my home for a final discussion. Initial contact was made at the beginning of July 2023, and the final meeting took place in mid-October 2023.
I received praise because the targets set at our first meeting were exceeded. I had already noticed this myself, as my shortness of breath when climbing stairs or walking uphill had decreased, my strength had increased, and I felt fitter overall.
For example: At our first meeting, I managed to stand up from a chair 20 times within one minute, reaching my full height (194 cm). At our last meeting, I did 26 repetitions. It's a simple exercise that anyone can try. In conclusion: This program from Pneumo Factory is incredibly helpful for navigating everyday life. The feeling of having increased your physical strength is priceless.
However, you have to stay active, because the effects of this session unfortunately fade quickly. And that would be a shame, because physical activity, especially in old age and with shortness of breath, can offer many benefits if it is appropriate and takes individual health conditions into account. Here are some reasons that speak in favor of physical activity in these situations:
- Maintaining mobility
- Improvement of cardiovascular health
- Respiratory health
- Weight control
- Strengthening bones
- improved mood
- mental health and social interaction.
It is important to note that the type and intensity of physical activity should be tailored to individual health, fitness level, and personal preferences. People with shortness of breath or other health problems should definitely consult a doctor before starting a new exercise program to ensure they are cleared for physical exertion. In some cases, professional supervision or physiotherapy may also be necessary to achieve the best results.
Either way, you can only win. Good luck.
