The 10 Best Tips For Coping With Parkinson’s

In this article we summarize what we think are the most important tips to make coping with Parkinson’s Disease easier. And it is not just about ‘thinking positively’ (because that doesn’t work for most people), but about coping with symptoms, positive and negative feelings, helpful and unhelpful people around you, communication with yourself and a lot more.

Below you’ll find the complete list of tips and a short description per topic.
1. Accept The Disease (But Not All Of The Consequences!)
2. Clean Language (Instead Of Dirty)
3. Get That People Don’t Get It (And Explain!)
4. Think Constructively (And Accept Negative Thoughts Too)
5. Pose The Right Questions (To Your Doctor Too)
6. Keep Up With Developments (But Don’t Become A ‘Professional’ Patient)
7. Relax! (And Avoid Stress)
8. Keep Doing The Fun Stuff (No Matter How People May React)
9. Connect With Peers (Patients, Partners, Care Givers)
10. Use Your Body To Change Your Mind

The short descriptions below may already help you considerably, but in order to make them even more actionable we will publish two articles about each topic over the next 20 weeks. One by Koen as a coach and one by Kees as an experience expert. In these articles you will find some more background and exactly how to use each tip.

1. Accept The Disease, But Not All Of The Consequences
We have published a facebook post about this already. Koen finds clients in his coaching practice to be mad at ‘the disease’. They are frustrated by this because it is not a concrete thing or person they can actually argue with or fight.

It is way smarter to ask yourself: “What is the consequence of the disease / the symptom and what can I do to cope with that consequence / symptom?”
For instance: when you can’t write legibly anymore, how can you still communicate with family and distant friends? The writing in itself is not the goal, unless your hobby is calligraphy, but communicating IS! And if calligraphy was your hobby, what is another hobby that allows you to still be creative?

The first article about this topic has been published on Thursday the 4th of June. The second on Thursday 11th of June. In them you’ll find extensive descriptions on what it means to accept your disease and how to do it. And you’ll find ways to reach the goals you have, despite the fact you may have lost certain faculties.

2. ‘Catch’ Yourself Using ‘Clean’ Language And Correct ‘Dirty’ Language
The usage of language is crucial in the way you experience any situation. You automatically react to language of others and yourself, because your subconscious takes language quite literally. Clean language is more important than you may think!

There are many ways to clean up your own language:
• Avoid ‘sickening’ language , because you might literally get what you ‘wish’ for! (“I’m sick and tired of Parkinson’s!”, “It really makes me puke.”! “It gets on my nerves.”)
• Use positive linguistics instead of negative (i.e.: “I want to achieve X and this is how I’m going to do that.” instead of “I want to get rid of Y, no more Z.”).
• Ask smart questions (“How can I achieve this-and-that and even have fun with it?” instead of “What have I done to deserve this?”). Both questions will be answered by your subconscious, and you won’t like any of the answers to the second one!
Be very aware of the exact things you say and think and correct anything ‘dirty’.

The first blog article about this topic will be published on Thursday the 18th of June. The second on Thursday 25th of June. In them you’ll find extensive descriptions on what clean and dirty language is and how you can change the language you customarily use. In addition the article describes how to best react to dirty language from others.

3. Get That People Don’t Get It And Explain It To Them.
Anyone who doesn’t have a chronic, progressive disease will never fully understand what that is like.
In addition: most people don’t know or recognize Parkinson’s symptoms. So people don’t understand what is going on and tend to react accordingly.

In order to help yourself to be empathic with these people: imagine you are not ill and don’t know anything about PD. How would someone with obvious symptoms come across to you? What should you at least know to be able to be a little understanding?
So what could you tell someone like that to get any empathy as a patient?

The first blog article about this topic will be published on Thursday the 2nd of July. The second on Thursday 9th of July. In them you’ll find descriptions of what puzzles unknowing people the most and what you can do to enlighten them. In addition the article describes how to best handle your own emotions that go along with people who don’t understand.

4. Think Constructively And Accept Negative Feelings Too
In article 2 (‘Clean Language’) the constructive use of language is described. Article 4 adds to that topic and, more importantly, shows you how to react to negative thoughts that will inevitably come up. It is counterproductive to blame yourself for having them, and luckily there is a simple way to handle them.

The First blog article around this topic will published on Thursday July 16th, the second on Thursday July 23rd. In addition the first article will show you why the tendency to have negative thoughts is completely natural and logical and why they are so valuable.

5. Pose The Right Questions, Even To Your Doctor
Many of Koen’s coaching clients have trouble posing the right questions to doctors and other medical staff, and also to care givers, family and friends. They have different qualms in asking questions because they worry about things like:
• “If I ask my doctor too many questions, he may find me a nuisance. And the questions I have are probably stupid anyway. He must have heard them all a thousand times.”
• “If I ask my friends for help too often, they will grow tired of me and will stop visiting altogether.”
The article will describe ways of handling these ‘internal dialogues’ and how to get yourself to ask the right questions in the right way.

The First blog article around this topic will published on Thursday July 30th, the second on Thursday August 6th. The articles will describe some more negative thoughts and the way to avoid or change them. In addition the articles show you how to pose questions in a way you won’t offend anyone.

6. Keep Up With Developments, But Don’t Become A ‘Professional’ Patient
Of course as someone with PD you want to know about the most recent developments in treatments for the condition. And for several reasons it is fine to stay informed and to gain hope for the future from that.

But you can overdo it too: If day in, day out you’re searching the internet, reading all of the newest books, watch TV programs and engage in courses on the topic, your focus may well be on the disease more than is good for you. You run the risk of becoming a ‘professional patient’ and that may seriously hurt you. After all, Parkinson’s is only one aspect of your life, or (as Kees says it so well:) “I do Parkinson’s on the side”.

The First blog article around this topic will be published on Thursday August 13th, the second on Thursday August 20th. The articles will describe how to stay out of this particular pitfall. In addition it will go into ways of sharing the burden of ‘keeping up’, for instance through cooperation and support groups.

7. Relax And Avoid Stress
Stress hinders the optimal functioning of your body and mind alike. It measurably slows down your immune system. Tension is sometimes unavoidable, but stress (too much tension too often) and a lack of relaxation can be avoided by anyone.

What you need to prevent stress is:
• Timely recognition of the first signs of tension
• The skills of avoiding and lowering tension
• The discipline to get enough rest when stress is threatening

The First blog article around this topic will published on Thursday August 27th, the second on Thursday September 3rd. The articles will describe some more background about stress and some simple but effective ways of preventing stress. In addition you’ll see how your body will benefit from enough relaxation.

8. Keep Doing The Fun Stuff, No Matter How People React
In article 3 you’ve already been armed against a lack of understanding from people around you. Article 8 describes de necessity to keep life fun and joyful, and how not to let yourself be hampered by out-of-proportion worrying about people’s reactions.

The First blog article around this topic will published on Thursday September 10th, the second on Thursday September 17th. The articles will describe how to handle unreasonable anxieties around other people’s reactions so you can keep doing the things you love in social situations. In addition the article describes how you could react to stupid things some people may say to or about you.

9. Seek Out Fellow Patients (Or Fellow Caregivers Or Partners)
One of the most important contacts for people with PD (and for every other chronic disease) is the contact with peers, people in the same situation. Only those who have PD know precisely what you’re going through, can tell you how they have handled different aspects and are able to exchange experiences around treatments, symptoms etc.

The First blog article around this topic will published on Thursday September 24th, the second on Thursday October 1st. The articles will describe the benefits of support groups and peer contacts and how to handle hesitations many people harbor (at first).

10. Use Your Body To Change Your Mind
The essence of the ‘mind- body connection’ is that anything you do physically has an effect on your thoughts, feelings and state of mind. And the other way around: anything you think or feel has consequences for your body (muscle tension, posture, symptoms, overall health).
In this article we will describe how to make good use of this in very simple and straightforward ways.

The First blog article around this topic will published on Thursday October 8th, the second on Thursday October 15th. The articles will describe exactly how to use the mind-body connection to your benefit.

We are convinced at least some of these topics will be useful to you. And if you miss any topic, please let us know!

Best regards,
Kees Vermunt & Koen Lucas