Fighting Against Parkinson’s (originally appeared in Wetzlarer Neue Zeitung)

This article was translated from Wetzlarer Neue Zeitung.  Click here to see the original in German.

Parkinson?s can strike anyone at any age: famous sufferers of parkinson?s were and are: (from left) former Pope John Paul II, the German actor Ottfried Fischer, American actor Michael J. Fox, ex-boxer Muhammad Ali and former German star tenor Peter Hoffmann.

Fighting against Parkinson?s

A worldwide search

Marburg/Kassel (gro).

The first of its kind: 21 clinical research centres worldwide are carrying out research on behalf of the Michael J. Fox Foundation to develop tests for the early detection and progression of Parkinson?s disease. Apart from Tübingen, the Foundation has chosen the Neurological University Hospital of Marburg and the Paracelsus-Elena Hospital in Kassel.

Marburg and Kassel are going to work together as part of the PPMI study (Parkinson Progression Marker Initiative). The Paracelsus-Elena Hospital is considered Germany?s largest and most prestigious Parkinson?s hospital. The Marburg Hospital, which is headed by Professor Wolfgang Oertel, is going to be in charge of imaging. There are two types of imaging tests. The first one uses magnetic resonance tomography to analyse brain structure and to find out about the size of the brain and about how many nerve cells and connections there are. A second nuclear medicine test is carried out to establish whether the neural connections that produce the neurotransmitter dopamine are intact. According to Professor Oertel and Dr. Brit Mollenhauer from the Paracelsus-Elena Hospital, this combined worldwide project that follows a structured systematic approach is very promising. So far there have only been small studies. Mollenhauer explains: ?For the first time we have an opportunity to systematically test promising biomarker candidates in a broad group of people with and without Parkinson?s?. According to her, the aim is to find objective indicators for Parkinson?s and to hopefully, one day, be able to diagnose the disease with simple tests.

Looking for trial participants

For the PPMI study, which is to cover a period of five years, Kassel and Marburg are looking for two groups of persons: 40 Parkinson?s patients in the very early stages of the disease who have not yet taken any Parkinson?s medication. In addition, the hospitals need 20 healthy people who are going to be examined and accompanied in the same way. The participants must be at least 30 years of age and the healthy ones must not have first-degree relatives with Parkinson?s. During the first year, the hospitals will carry out quarterly and then 6-monthly examinations during which samples of blood, urine and cerebrospinal fluid will be collected.

Information: www.PPMIinfo.org. If you are interested please contact Dr. Brit Mollenhauer on 0561 6009272, e-mail: brit.mollenhauer@pkmx.de or Professor Wolfgang on 06421 5866279, e-mail: oertelw@med.uni-marburg.de (gro)

?It has been a long journey?

It took four years and many doctors for Joachim Ritter to finally find out that he had Parkinson?s

(by Steffen Gross)

Kassel. You have to be a very careful observer to notice that there is something wrong with Joachim Ritter. It is his slow-moving right arm that gives it away. The 41-year-old, fully trained electrician suffers from Parkinson?s disease.

When, shortly before Christmas, he was diagnosed with Parkinson?s the athletic man from the German region of Hessen was dumbstruck.?It was the end of the world for me?, he says. ?I did not know how to handle it. I thought of my two young children (11 and 14) and how my employer was going to react? explains Ritter. At that point he had already been through four years of seeing general practitioners, orthopaedic specialists and neurologists without any of them being able to tell him what was wrong with him. He even took part in a rehabilitation programme. Suspected diagnosis: upper cervical spine problems. The first time that this passionate mandolin player realised that something was not quite right was in 2006 during rehearsals for a Christmas concert. During the tremolo his hand failed him and got stuck in the strings. Ritter, who at the time was only 36 years old, tried to ignore the problem for one whole year. Then he went to see his family doctor, who, similarly to the orthopaedic specialist and the neurologist he consulted subsequently could also not provide him with a clear diagnosis. Ritter says: ?The neurologist thought that I was too young to have Parkinson?s.? In the autumn of 2010 his symptoms got worse. He could no longer control his right arm, hand and finger as before. Among other things he found it increasingly difficult to operate the computer, which was part of his work as an employee of a regional power supply company. Finally, at Marburg University Hospital, a doctor told him straight to the face: ?You probably have Parkinson?s disease.? The definitive diagnosis followed two months later.

Outing himself was difficult

Outing himself was hard for the 41-year-old. Now everyone is in the know: his family, his employer, his friends and acquaintances. He says that most of them have reacted very positively, even his employer who, together with his colleagues, has shown him a great deal of support. Over the last three months the disease has become really noticeable. ?I can feel my arm but it does not do what I want it to do. I don?t have the typical shaking yet.? He can no longer fully pursue his hobby of bee keeping and he had to completely abandon playing his mandolin. On bad days, buttoning his shirts is a nightmare. Ritter tries to avoid stress. ?Stress is poison?, he explains. And he is fighting Parkinson?s with physical exercise ? power workouts, cycling and Nordic walking, albeit with moderate success. At the moment the 41-year-old is spending some time in Germany?s most prestigious Parkinson?s Hospital, the Paracelsus Hospital in Kassel. There, he is taking part in the worldwide study supported by the Michael J. Fox Foundation to research a biomarker for the early detection of Parkinson?s. ?I am doing this because I want to help others and myself. Maybe I will be the one who can help solve the puzzle?. Ritter?s plan for the future: ?Enjoying life more fully and cope as best as I can.?

Parkinson?s can strike anyone

Together with the Michael J. Fox Foundation, Marburg and Kassel research speedy tests

(by Steffen Gross)

Marburg/Kassel: Parkinson?s disease. For those concerned, the diagnosis comes as a shock. According to estimates, there are between 150 000 and 200 000 sufferers of Parkinson?s disease in Germany. In 30 years this number will double. So far no cure has been found. But there is hope for the future.

People commonly assume that Parkinson?s only affects the elderly. This is not the case. The disease can strike anyone. In Germany, one in 200 people over eighty suffers from Parkinson?s. However, there are also much younger patients. Around five percent are younger than 40 and, in exceptional cases the first symptoms appear before the 20th birthday. Michael J. Fox, former boxer Muhammad Ali and Pope John Paul II are some of the more famous sufferers of Parkinson?s. No cure has been found yet and it may take many years until Parkinson?s disease can be safely diagnosed. Michael J. Fox (49) became ill with the disease when he was only 29 years old. He has been fighting it ever since. From his office in Fifth Avenue in New York, two floors below his apartment, he manages his foundation, the largest private sponsor of research into Parkinson?s worldwide. Now the Michael J. Fox Foundation has started a long-term worldwide study sponsored with 40 million dollars in order to improve early detection and treatment. Participants are the Neurological University Hospital of Marburg together with the Paracelsus-Elena Hospital in Kassel. Worldwide 400 Parkinson?s patients as well as 200 healthy trial subjects, who serve as the comparison group, are to take part in the study. The goal: Finding the first reliable indictors and tests (so-called biomarkers) to detect and treat Parkinson?s earlier and more safely. After all, this is the only way to establish the efficacy of new drugs and ultimately to find a cure for the disease. As part of the study, 21 clinical research centres worldwide – 16 in the US and five in Europe with Marburg, Kassel and Tübingen being the only German sites – are going to carry out research over a period of five years, Although the London doctor James Parkinson came up with the first description of the condition as early as 1817, there is still very little knowledge as to its causes. Today, we know this much: Out of one hundred patients 15 get the disease due to genetic inheritance. Between 16 and 18 genes are said to be responsible. As to the remaining 85 patients, the cause is completely unclear, says Professor Wolfgang Oertel, Director of the Marburg Hospital for Neurology: ?What is being discussed are environmental factors, viral infections, traumas ? all of these make it statistically more likely that someone gets Parkinson?s?.

Professor Oertel?s colleague in Kassel, Dr. Brit Mollenhauer, senior physician and clinical trial leader at the Paracelsus-Elena Hospital, confirms the findings: ?There are still many open questions?. What we do know: The disease of the nerve system originates from a region in the brain that is referred to as ?substantia nigra?. This is where in healthy individuals dopamine is produced, a substance that plays an important part in the transmission of neural information to control motor function. In Parkinson?s patients the cells of the substantia nigra die. Why? This still is the big question.

Patients pass through five stages of the disease with each lasting up to four years.

Early detection is the challenge faced by Parkinson?s researchers because as soon as the typical tremors start, almost 70 percent of the nerve cells have already died. The currently available drugs can only replace the missing dopamine i.e. only fight the symptoms but not the causes. This is why early detection is essential. A Parkinson?s patient passes through five stages. The disease starts surreptitiously with symptoms that can hardly be noticed by the person concerned or the doctor. Only when 60 to 80 percent of the dopamine cells have ceased to function will the first signs become visible: a slight tremor in the arm or slower movements, clumsiness, depressive moods or a general slow-down of movement may be the first noticeable signs. Stage five means wheelchair i.e. patients can no longer move, they are too stiff and too slow: ?Each phase lasts three to four years. Those whose body is affected on one side now will no longer be able to move by themselves in 20 years? time. The right medication delays the respective phase by one or two phases?. However, there are also other types of progression, says Mollenhauer. Many patients remain ?fit? for a very long time.

Parkinson?s is on the rise. Oertel: ?The older a person the more likely it is that the disease will occur. In 30 years? time the number of patients will rise by 50 percent. Mollenhauer: ?If we all live to a hundred and twenty, we will probably all develop Parkinson?s and Alzheimer?s?. Oertel: ?We need to find something now so that neurodegenerative diseases such as Parkinson?s and Alzheimer?s can be delayed. Otherwise the health care system will collapse. These are very expensive conditions?. The start of the huge study supported by the Michael J. Fox Foundation makes the neurologist feel optimistic. ?I am hopeful that in fifteen years we will have found something that can impact and stop the progression of the disease?.

Where does the trembling come from?

Where does the trembling that is typical for Parkinson?s come from?

Professor Wolfgang Oertel explains: ?There are cells in the brain that fire rhythmic signals back and forth. In healthy people this firing activity is suppressed through a control mechanism that requires dopamine. If there is no dopamine, the control mechanism can no longer suppress this rhythmic activity, which will then cause the trembling. It is actually part of every human being but it is switched off because trembling like this is not particularly helpful?. (gro)

Trembling is not enough for a diagnosis

(by Steffen Gross)

Marburg/Kassel.

Parkinson?s is not curable. Parkinson?s is difficult to diagnose. A so-called biomarker may bring help in the future. The neurologists Professor Wolfgang Oertel and Dr. Brit Mollenhauer explain why.

How does a Parkinson?s patient notice his disease?

Wolfgang Oertel: The patient will say that he is weak, slower, that his hand moves more clumsily, that his arm no longer swings when he walks. He will notice a certain degree of stiffness. But he will assume it is just aching muscles and that there is nothing to be overly worried out. Then comes a point when he will notice that he can no longer button up his shirt and that he has less energy. Patients are more irritable. Only then will the patient realise that there is something wrong with him.

Why is it so difficult to diagnose Parkinson?s disease?

Brit Mollenhauer: People who have a one-sided tremor at rest are most likely to have Parkinson?s. If people knew what do look out for they would be able to detect Parkinson?s relatively early, for instance by an impaired sense of smell, some sleeping disorders and depression in combination with a trembling or less agile arm or leg. But people have the tendency to block these things out.

This means that patients notice that they have less control over their body?

Oertel: Yes, everybody has the odd little ache or pain. Some tell themselves that it will go away of its own accord. Others go and see a doctor too early thinking they have Parkinson?s because someone in their family or circle of friends is a sufferer. But many try to ignore any problem they may have for a certain amount of time.

Why do we know so little about Parkinson?s?

Oertel: We actually already know a great deal. We know that the neurotransmitter dopamine is missing. The frustrating thing is that this lack of dopamine was identified as early as 1960 and that since then everyone has been concentrating on dopamine. Only in 1994 did it become apparent that people with Parkinson?s are most likely to have an abnormality in the processing of a certain protein that overwhelms the cells and causes them to die. There are increasingly more indications of such a process.

Why is the biomarker that you are looking for so important?

Mollenhauer: The problem is the late diagnosis and that, at the moment, we cannot map the progression of the disease. An increase in the tremor may be a good measuring scale. However the diagnosis and the evaluation not only differ from one neurologist to the next but also depend on the time of the day. We need a better objective measuring value to improve the mapping of disease progression. We need to find out what happens at a cellular level so that we can also describe it when, in the future, we can cure Parkinson?s disease.

This article was translated from Wetzlarer Neue Zeitung.  Click here to see the original article in German.