Food for thought in the fight against Parkinson's disease
My personal experiences with Parkinson's disease since 2013 can be summarized in a list of around 15 points. They are entirely subjective and cannot be applied to other patients. They are a snapshot of the current situation in the summer of 2025 and are not intended to be exhaustive or valid indefinitely. However, if one or two people feel validated by one of these thoughts or approaches, then compiling this list will have been worthwhile.
Live in the moment.
You don't know if it will happen again. And you don't know if you will regret not having made the most of it.
You must not give up the fight.
Those who give up too soon have to deal with defeat for longer.
Illness comes at a cost:
Find out about your rights and entitlements, keywords: choice of statutory health insurance fund, Schwerbehindertenausweis (disability pass), legal equality, reduced earning capacity pension, long-term care insurance, Pflege-Bahr, discounts on Deutsche Bahn, airlines and transport companies (wheelchair service).
When traveling, the “Euro-Behinderten-WC-Schlüssel” (Euro disabled toilet key) from the Darmstadt association “Club Behinderter und ihrer Freunde e.V.” (Club of the Disabled and their Friends) is helpful. It allows you to open the doors to many disabled toilets in Germany, Austria, and Switzerland free of charge.
Develop a thick skin and patience.
Be prepared for lengthy correspondence with government agencies, insurance companies, and other institutions. Some applications are rejected outright the first time around. In this case, you should consider filing an appeal and, if necessary, submit additional documentation so as not to lose any legal claims.
Not every perceived defeat is really a defeat.
On closer inspection, many relapses turn out to be new opportunities.
Stay critical:
When choosing a doctor, medication, psychotherapists, physiotherapists, speech therapists, occupational therapists, health insurance, and so on. You have the right to a second opinion and do not have to accept the first place you find for rehab or treatment.
Every case of Parkinson's is unique.
Good neurologists are much more than just pill dispensers. Even if you sometimes have to wait several months for an appointment with another neurologist, it is often worth looking for a doctor who you feel comfortable with.
Listen to yourself, your inner voice, and your gut feeling.
You decide which and how many medications you take and when. No neurologist, no matter how good, can take that decision away from you. Every medication remains a kind of pharmaceutical field trial with an open outcome. Deep brain stimulation (DBS) can work wonders and has made great strides in recent years. But it can also go wrong.
Don't let
by the looks of others. They often know as little about Parkinson's as you did before your diagnosis. And be honest: in their place, you might look just as clueless and stupid.
Stay active and mobile.
If your dopamine deficiency affects your sporting activities, good physical and occupational therapists will give you sample exercises to take home with you to help you help yourself. Even if it's only 10 or 15 minutes a day, you'll notice how good it does you.
Try table tennis with PingPongParkinson
PingPongParkinson e.V., based in Nordhorn, Lower Saxony, has brought several thousand Parkinson's patients to the table tennis table since it was founded in 2020. There are now over 260 centers throughout Germany. Table tennis promotes physical and mental agility. You can find your nearest location at www.pingpongparkinson.de
Smile, or at least try to.
Parkinson's disease is often accompanied by an expressionless face. The gaze becomes fixed. This can give the impression of being slow to understand. If the situation allows, explain the phenomenon. It is often better than your counterpart knowing about it before they move on to other thoughts, e.g., a meeting in the office, a lecture at an adult education center, or introductions on a group trip.
Speak slowly, clearly, and emphatically.
If your Parkinson's affects your speech, a speech therapist can help you strengthen your voice. Singing is also a good exercise for maintaining speech. Why not give it a try in a choir? Singing in a group is a great experience. And there are also choirs that don't use sheet music at all.
Think carefully about
when and to whom you tell people about your Parkinson's. You won't be able to hide it forever. Coming out as someone with Parkinson's is easier than being outed. However, you shouldn't tell everyone about your diagnosis right away, especially not your employer or people who only “mean well.” The opposite of “well done” is often “well done.”
Be prepared for other people's reactions.
These can range from discriminatory, criminal insults to interested but reserved participation to exaggerated expressions of sympathy. It always depends on the person you are dealing with and their experiences.
Don't be sad
if you lose friends and acquaintances over time. Some people simply cannot handle the truth and have difficulties with themselves. They are not a great loss. And you will certainly meet new people who can inspire or encourage you. And true friendships are stronger than any Parkinson's syndrome. This is especially true for relationships and marriage.
Get your affairs in order:
Think about whether you need an exit strategy. Take care of your estate, including your will and advance decision, in good time. Knowing that your loved ones won't have to deal with your affairs will give you new strength. Life doesn't end with a will. It only really begins then.
You decide when the time is right.
Parkinson's is not fatal. Nevertheless, the end can be abrupt and unpleasant. But you are in control. If you need help dying: Seek assistance from therapists Perhaps the organization for the right to a self-determined and dignified death is something for you?