The disease is incurable. Those affected suffer greatly from the symptoms, which get worse and worse over the years. A new network now offers help to Parkinson's patients.
At the age of 58, Gerhard R. (name changed) from Weingarten noticed that his right hand occasionally trembled. „At first I put it down to stress,“ recalls the former welder. But after a few months, his wife noticed that his movements seemed to be slower overall.
He finds it increasingly difficult to tie his shoes, which he finds embarrassing. „I've even bought myself trainers with Velcro fasteners,“ says the sports enthusiast. His handwriting has also changed - it has become smaller and looks shaky. The GP refers him to a neurologist.
Nerve cells in the brain gradually die off
After a thorough examination and a Datscan, which measures the density of dopamine transporters in certain regions of the brain, the diagnosis is confirmed: idiopathic Parkinson's syndrome. Gerhard R. is shocked. Although he knows the name of the disease, he is only slowly realising the extent of it.
The doctor explains that it is a chronic, progressive neurological disease in which dopamine-producing nerve cells in the brain gradually die off. It is incurable and the symptoms get worse over the years.
Initially, however, everyday life can be managed well with medication. Taking levodopa significantly alleviates the tremors and slowness of movement. Gerhard R. remains active, goes cycling with his wife to Bad Waldsee or Lake Constance, goes for walks in the Baindt forest and tries to behave as normally as possible. However, after a few years, the first side effects appear: his body parts sometimes twitch. On other days, there are periods of time when his body can hardly move at all.
Rigid facial expressions are often misinterpreted
The facial expressions of Gerhard R., who has now retired, appear more rigid than before, which means that outsiders often perceive him as apathetic. The now 70-year-old from Weingarten would sometimes like to withdraw from social life, as he says. „But luckily we have lots of friends who cheer me up, with whom we have barbecues in the summer or watch football in the evening.“
In the meantime, the pensioner has also come to terms with the disease. He knows that his hands will eventually become too shaky to write, that he will probably have difficulty swallowing and that the risk of bone fractures will increase.
He also realises that at some point he may no longer be able to dress or wash himself. Because in the final phase of the disease, many patients are completely dependent on care and have to be artificially fed. But it often takes many decades to get to that point - and it doesn't have to be that far. Medication and therapies often delay the progression of the disease for many years.
Gerhard R. also hopes that he will be able to do without outside help for a long time to come and that a drug will be found in time to cure Parkinson's one day. For example, a promising phase III trial is currently being conducted by „Blue Rock Therapeutics“, a subsidiary of the pharmaceutical company Bayer.
Cooperation between NDT and Munich University Hospital
The Neurological Clinic and Polyclinic of the Ludwig Maximilian University (LMU) Hospital in Munich has founded a network called „Parklink“ to provide optimum care for Parkinson's patients close to home. The university hospital is working together with eleven clinics from south-west Germany, including the Clinic for Neurology and Epileptology at the ZfP Südwürttemberg in Ravensburg-Weißenau. On Saturday, 3 May, patients and relatives will be able to find out more about the disease and the help available.
The aim of the network is to improve the care of patients with Parkinson's disease in rural regions via the telemedical connection of a university hospital. „Parklink combines modern Parkinson's therapy with the latest research findings,“ according to a joint press release from LMU and ZfP.
The advantage for patients: uncomplicated telemedical presentation for cases where drug treatment options are not sufficient.
Dr Christian Tilz
Christian Tilz, Head Physician at the Clinic for Neurology and Epileptology at the ZfP Südwürttemberg, is delighted that the cooperation network has been established and explains: „The advantage for patients is the uncomplicated telemedical presentation for cases where drug treatment options are not sufficient. This involves evaluating other therapeutic options, such as neurostimulation procedures or pump therapies. Further aftercare following such an invasive procedure can then take place close to home at our centre in Ravensburg. For our clinic, this cooperation represents an essential component of modern patient care in line with the latest research.“
There are currently around 400,000 people living with Parkinson's disease in Germany, and men are more frequently affected than women. Many celebrities also suffer from the nerve disease and have publicised this: US actor Michael J. Fox („Back to the Future“, for example, entertainer Frank Elstner and, as recently as February this year, star conductor Daniel Barenboim. Today it is possible to effectively alleviate the symptoms. However, it is far from always possible for patients to visit a specialised department or clinic for individual, high-quality medical care on site.
Access to new treatment methods
Parklink was founded to close this gap and offer patients optimal care close to home that is also linked to the expertise of a university hospital. Uniform standards are intended to facilitate access to innovative diagnostic and treatment procedures. Patients also benefit from the opportunity to take part in studies at the LMU Clinic. Their relatives are also actively involved through training courses.
The treatment of Parkinson's disease is a major focus of the Clinic for Neurology and Epileptology at the ZfP Südwürttemberg. On the information day on Saturday, 3 May, there will be various presentations between 9.30 am and 1.30 pm, including on physiotherapy, aids and deep brain stimulation. Registration is not required.