On Thursday, November 16, 2023, organized by SDDH, the Reference Center for Neuromuscular Diseases and Clinical Electromyoneurography of the University Hospital Center Zagreb and Roche, a conference was held. other SMA Exchange Forum which is on. Within the framework of the Forum, members of the multidisciplinary team of the Reference Center are, under the motto “FOR Stronger Muscles, Live Actively", talked about ways to care for the health of people with spinal muscular atrophy (SMA) and neuromuscular diseases in general.

The forum was moderated by prof.dr.sc. Ervina Bilic who emphasized in her opening remarks that in agreement with Marica Mirić, president of SDDH, it was agreed that the emphasis would be placed on exercise, stretching, breathing and nutrition since a “healthy life” is important for everyone, especially people with neuromuscular diseases (NMD). Dr. Bilić, through her introductory presentation on the topic “The importance of breathing and stretching in physical activity" stated that breathing, especially deep breathing, is also a physical activity that, in addition to improving respiratory function, contributes to stress reduction, but also to better posture since it activates the intercostal muscles and thus "aligns" the spine. Regarding stretching exercises, she emphasized that their special significance lies in the fact that they help muscle cells expel by-products created by muscle fatigue, thus positioning muscle fibers in the optimal position for contraction. She also showed several examples of breathing and stretching exercises, giving suggestions on how everyone can adapt the exercises according to their functional abilities, since they are important for all people, regardless of physical abilities.

Andreja Klokočki she talked about it how to assess your physical activity where she stated that the physical assessment of people with SMA includes regular monitoring of posture, muscle strength, range of motion, assessments of walking, breathing, quality of life, and assessments of functional status and disability.

Doctor Andrea Zemba Cilic she explained which ones healthy fats for our muscles, indicating that our knowledge of lipids or fats is often simplified and that the function of different types of fats in the physiology of the body is still insufficiently researched, but it is known that a certain amount of fat in the body is necessary for us to survive and that it affects many processes in the body. In conclusion, she highlighted that, according to research by Delghan and colleagues published in 2017, all natural fats are healthy, including saturated fats, but their intake should be moderate. A certain amount of unsaturated fats should be present in the diet every day, saturated fats should be consumed occasionally, but in a significantly limited amount, while trans fats should be avoided, which can be achieved by learning and informing about fat intake.

Physiotherapist Snježana Švedi is talking about it Can we exercise while sitting? stated that exercise and movement improve both physical and mental well-being, and emphasized the importance of individually adapting exercise for people who cannot walk independently. She stated that all types of exercise can be performed in a sitting position, in an adapted form, from breathing and stretching exercises, to conditioning exercises and strengthening exercises, especially strengthening the core to maintain core posture.

Doctor Marina Petrovic, a neurologist, explained to the participants how to read food labels and what calories are. She stated that every food product in the Republic of Croatia must be declared in accordance with the Regulation on Information to Consumers about Food as proof of the healthiness of food. She mostly referred to the list of ingredients, emphasizing that the ingredients are listed in order of the total quantity in an item and that it is especially necessary to pay attention to the first three listed ingredients (e.g. avoid buying if the first three list sugar). She explained how to understand the recommended daily intake of an individual ingredient and concluded by stating that it is necessary to choose products with as little saturated fat, salt and sugar as possible, and as much fiber, protein, vitamins and minerals as possible, increase the intake of water and vitamin D, oily fish and vegetables, and reduce frying, breading, the use of sauces and processed foods, and pay attention to the balance between food intake and energy consumption on a daily basis.

Dr. Barbara Sitas, spec. neurologist, presented the thinking Are housework physical activity?. Asking herself what all falls under household chores, she made the participants aware that everyone does a lot of things on a daily basis that they do not experience as an activity that consumes energy. She concluded that, although they cannot completely replace exercise and give the same results as regular physical activity, since exercise is structured and uses scientific principles, household chores, to the extent that each individual can perform them, can be a great tool to supplement exercise and improve both physical and mental health, and it was agreed that the participants would think about which household activities they could use as a form of exercise by the next meeting at the SMA Exchange Forum.

Topic "How movement affects the brain", i.e. the central nervous system, from maintaining muscle function and stimulating neuroplasticity to improving mental health and improving overall quality of life," was presented by Dr. Hrvoje Bilic, spec. neurologist. He highlighted the importance of neuroplasticity, i.e. the ability of the brain to adapt and compensate for the loss of motor neurons, i.e. function, especially in the context of people with motor neuron diseases such as spinal muscular atrophy (SMA), and in conclusion, he emphasized that movement (as far as possible) is a key tool in control of this type of disease and maintenance of functional capacity.

In the last presentation, Dr. Mirea Hančević, a neurologist, explained Why is it important to exercise with SMA therapy?She briefly highlighted the most important features of the exercise recommendations for SMA and presented the results of a study conducted with people receiving therapy for SMA and those who did not, which found that the treatment was effective in both groups, but significantly more effective (almost four times) in people who, along with treatment, also exercised regularly.

After all the presentations, the medical team of the Reference Center for Neuromuscular Diseases and Clinical Electromyoneurography at the Zagreb Clinical Hospital Center answered questions from the participants, who this time numbered 48 in total from different parts of Croatia.