A fictitious day in the life with Parkinson's, part 2

So what does the day look like for someone with Parkinson’s in the later stages of the disease? We ourselves like to ignore this part of the illness and we do everything we can to delay the point at which it occurs as much as possible. But it will come, that's a fact, at least for those with the disease at a young age, where Parkinson's disease has had enough time to develop.

A fictional day in the life of Parkinson's

This day highlights the daily challenges and joys of living with Parkinson's. There are highs, the joy of activities like table tennis and playing the piano, and lows caused by the OFF phases. But with support, therapy and a strong will, it is possible to live a fulfilling life.

What you need to know about Parkinson's

When a person with Parkinson's or a relative wants to find out about a possible disease, accompanying symptoms play a crucial role. These can affect different parts of the body, including skin, skeleton, sensory organs and psyche. The severity and occurrence of these symptoms vary from person to person, and it is important to note that some symptoms may have other causes.

The dark side of Parkinson's, on the right lines, German version

6th and final part of the mini-series about Jon Stamford and his experiences with Parkinson's. The series ends on a conciliatory note with a nice anecdote that describes the famous "splinter in one's own eye" in a very vivid way.

As a reminder, here is the background to the series:

The dark side of Parkinson's, the knockout punch

Sometimes it is difficult or embarrassing to talk about the symptoms. Patients may be reluctant to share their experiences with their family doctor, or may not even be aware that this is a component of Parkinson's disease. These short films are designed to provide clues to patients by addressing uncomfortable issues and encouraging them to make a connection with their illness and seek medical help.

“The Hand” – an extraordinary video about the hand as a metaphor for Parkinson’s

A thought-provoking video about living with early-onset Parkinson's disease. I published the video for the first time about a year ago. Thousands of new readers have now been added, from whom I don't want to withhold this small work of art.
Some of you will recognize your own hand as a metaphor for your illness.

The dark side of Parkinson's, the agonists and the ecstasy

Sometimes it is difficult or embarrassing to talk about the symptoms. Patients may be reluctant to share their experiences with their family doctor, or may not even be aware that this is a component of Parkinson's disease. These short films are designed to provide clues to patients by addressing uncomfortable issues and encouraging them to make a connection with their illness and seek medical help.

Giving up is not an option

Here Gunnar with his 20 years Parkinson's in the neck, 49 years old, former export manager of the last coffee roasting company that remained from the GDR, art and culture café operator, member of the ALSO team (prevention against drugs and violence) .... and now early retirees.

And on the other hand I, with my 65 years and almost 4 years of Parkinson's experience, former manager and now editor of the Parkinson Journal, we could not be more different. And yet we are connected by an inner bond that almost everyone affected by Parkinson's knows.
The knowledge of the inexorable progression of the disease and the mantra many of us carry before us - "Giving up is not an option".

Right now, episode 61 with Frank Elstner

After more and more "Parkies" joined our project PingPongParkinson-VR and we already have our own ranking list, the step to the first tournament was only logical.
 
In the future, the "International PingPongParkinson-VR-ChampionShip" will take place on the first Sunday of each quarter.
 

We start unscheduled on Sunday February 5th at 18pm. Anyone with Parkinson's disease and who has the technical requirements for the TT simulation "ELEVEN TT" (VR glasses Quest1 or 2) can take part.

 
The tournament will be broadcast live on twitch and youtube. Interested parties should please apply as soon as possible, since only 20 starting places can be allocated in the first tournament.
 

Parkinson's in Italy

As in Germany, there are also various self-help associations and contact points for people with Parkinson's in Italy. Massi is involved in two national associations, Parkinson Italia, an umbrella organization, and AIGP, an association for young patients, which Massi chairs. The organizations are currently working together to set up a national network in order to be able to bring certain topics to the public, but above all to politics, with more emphasis.

Taking care of young people is new in Italy. Nobody knows exactly how many young people with Parkinson's disease there are in Italy. Officially, no distinction is made according to age at diagnosis. The symptoms and course of the disease look very different in young people. Massi even goes so far as to say that young people with the disease are a completely different disease. The Association for Young Patients, which has offices in all parts of Italy, is working to collect this information and data in order to promote more differentiated care for patients.