“rest”. This has been a no-go for people with Parkinson’s for decades. We now know that physical activity is key to slowing its progression. It remains to make it available to everyone.
We don’t know much about Parkinson’s disease until we experience it. For many, it comes down to generalized and uncontrollable tremors that are difficult to calm with medication. The reality is far from this simplified representation. “This neuroprogressive disease is characterized by slowness in performing certain vigorous and repetitive movements, such as brushing teeth, peeling vegetables or fast walking, describes Dr. Teodor Danaila, neurologist and head of the Parkinson Expert Center in Lyon. It also causes stiffness caused by abnormal muscle contraction, mainly in the small joints. As for limb tremors at rest, they often have an asymmetric appearance and occur in only 60% of patients. Finally, in addition to these motor symptoms, other manifestations are added: anxiety, sad thoughts, fatigue, sleep problems, difficulties with attention, concentration, planning… So many anomalies arise from lesions affecting certain so-called dopaminergic neurons, located in the heart of the brain, in the substantia nigra. Their role: they produce dopamine, “a neurotransmitter necessary for motor skills, cognition and emotions”Dr. Danaila continues.
Slowing down the progression of disability
To restore dopamine production, drugs have been developed since the late 1960s. “Although they have progressed well and today enable survival close to or even identical to the survival of the general population, they do not solve the problem of quality of life. Because none of them slows down the progression of the disease: they only mask the symptoms., notes the expert. They are also less effective as the pathology progresses and may cause unwanted effects. For example, in 40% of cases, dopamine agonists change behavior and create addictions or compulsions.
However, there is another method of treatment whose ability to alleviate the present disturbances and prevent the progression of disability and loss of autonomy has been proven: physical activity. “It is as important as drugs in managing the disease”, explains Amadine Lagarde, CEO of France Parkinson. The World Health Organization recommends weekly exercise of 75 minutes of intense activity or 150 minutes of moderate activity. “To get the most out of physical exercise, you should actually go beyond these recommendations and exercise at least 30 minutes a day until you’re out of breath, specifies Amadine Lagarde. All activities are possible as long as they do not expose you to the risk of shock. Nordic walking, for example, is widely practised: it is intense and, thanks to the poles, allows working on coordination. » Since 2014, Teodor Danaila has been leading the SIROCCO program at the Lyon Center of Expertise. Patients who are not affected by major disability or incapacitating pain are welcome there for five consecutive weeks to practice five to six hours of intensive rehabilitation activities per day (speech therapy, physiotherapy, adapted physical activity, water polo, etc.). “From the first groups, we noticed a very significant improvement at the end of the program in terms of balance and mobility, and often we even had to reduce the treatment of patients”, notes the neurologist. By comparing brain activity during walking, before and after the course, Dr. Danaila’s team was able to notice surprising differences: “Parkinson’s disease is a kind of model of very accelerated aging. Through spectroscopy, we observed a deep reorganization of cortical loops, at the level of the frontal lobe. In other words, physical activity reversed the changes caused by the disease.”
Easier gait and good mood
Although Murielle Dimitri did not participate in the SIROCCO program, this former dance teacher who was diagnosed in 2019 can still see the benefits of physical activity. “I practice brisk walking for 1.5 hours a day, five times a week. I add three weeks of core training and stretching sessions, singing for voice work, sophrology for sleep techniques… If I stop this training for a few days, significant contractures in my left leg and spasms Very painful night symptoms that I managed to get rid of make it disappear again . » This diary of a champion also allows the sixty-year-old to find a fluid step, without any stiffness. “I also notice that I am in a much better mood, my husband can confirm that! » For her part, 82-year-old Ginette Alazard, who has been ill for ten years, walks to her physiotherapist twice a week for an hour of cycling and working on balance, mobility and muscle strengthening. “I also bought myself a semi-recumbent exercise bike that I use at home for thirty minutes every day. I just crossed the 1000 km mark! I feel in good shape, I’m even less tired when I leave the physiotherapist than when I start the session,” she testifies.
The solution therefore seems obvious: sport for all sick people. It’s not that simple… In a survey whose results were published in March 2024, France Parkinson noted that 17% of patients do not practice physical activity, and that 30% have reduced their practice since receiving the diagnosis. In addition, only a minority manage to respect the weeks of duration recommended by the WHO – which are lower than the effective duration. “These shortcomings are primarily the result of a lack of orientation from the beginning of treatment, laments Amanda Lagarde. The diagnosis is often made by a private neurologist. patients leave with a prescription for medication and a follow-up appointment scheduled a few months later. He only rarely adds physiotherapy. Even if physical activity was mentioned during the consultation, being surprised by the announcement means that they have little recollection of this aspect and do not know where to turn. They are then left with fragmentary information for months. »
The need for a new way of care
Another problem is that prescription sport is currently not possible, because its treatment in the context of ALD Parkinson’s disease is not foreseen. “It is clear that there is a lack of a health professional who could impart basic knowledge and prescribe physical activity from the very beginning.”, summarizes director France Parkinson. For the association, physiotherapists are the best contacts for performing this role. With this in mind, last year, with the French Federation of Physiotherapists, she proposed a modification of the patient care pathway consisting of a systematic offer of consultation with a physiotherapist as soon as the diagnosis is made. “If the neurologist doesn’t prescribe it right away, this conversation could be triggered automatically with the initiation of ALD, specifies Amadine Lagarde. It would serve to provide basic information, explain the benefits of being physically active, think about sports and exercises that could be considered…” The measure was submitted to the College of Physiotherapy, whose return is expected during the year, before the possible recognition of the new act by the High Health Authority in order to integrate the nomenclature and be compensated.
Then there will be one last pitfall to overcome: the training of physiotherapists. “Their initial training has little to do with Parkinson’s disease, underscores Amadine Lagarde. Their knowledge therefore requires continuous education, which explains why many of them are not familiar with the specifics of pathology treatment. This is also one of the reasons why neurologists do not have the reflex to refer their patients to these health professionals. »