­­A Parkinson’s diagnosis – forever?

By Lilian Sjøberg – online Parkinson’s Coach

To get a chronic disease diagnosis is overwhelming! You are told by your doctor that you will have to live with this disease for the rest of your life, you are on daily medication, and you feel that you have this sticker on you: sick for the rest of your life!

However, science has shown that you can do much for yourself to understand, improve and help your condition. When I started working with the so-called chronically ill, I noticed a number of puzzling things: some Parkinson’s clients were not affected by the disease all the time, they had time-outs where they had no tremors or less tremor. Their condition was affected negatively by how they thought about their illness, and stress seemed to affect their symptoms! This told me that it must be possible therapeutically to influence your symptoms, be they tremor, anxiety, freezing or other physical or psychological expressions of your disease.

This paper introduces you to my work with Parkinson clients, and my focus is on:

• creating awareness of what situations cause your symptoms.
• how we – the client and I – approach and talk about the situation
• how we work with the symptoms
• what the clients do once they are on their own, including using the tools that I supply them with.

Michaels’s story

Three years ago, I met Michael. He told me he had Parkinson’s disease. Michael was diagnosed at the age of 47 and had been taking medication for 7 years. He went to the normal check-ups with the doctor and neurologist, and they all agreed that “it was going down-hill slowly”.

He had 3 years ago a persistent tremor in his right hand and a cramp in his foot.

He was still in a good mood but said that he just before diagnosis started brushing his teeth with his

left hand and had difficulty buttoning his shirts. He had begun eating later than his colleagues at work. It was embarrassing and strenuous to eat with

colleagues when he was in constant anxiety about wasting food due to his tremor. He had just stopped at a dancing class to his big regret. His social world got smaller.

Michael had a stressful past as owner of a small farm that should feed him, the four children, and his wife. The farmhouse was old, and he got a lot of stress trying to build the house better after stormy weather. In the end, he had to give up, and he sold the house. His marriage broke, and he

Click the link an get the full story about how Michael ended up at a 20 km walk healthier than before his diagnosis.

The disease progressed for ten years giving him bigger and bigger symptoms. When he walked the dog, he had to stop now and then due to cramping in his feet,and he also had problems dressing. His symptoms were the biggest at work and in the evening watching television. He stepped up on medication several times.

He reached the point where he was forced to change to a job partly paid from health care insurance and forced to reduce his number of working hours per week to only 15. He barely got enough money to pay his bills and feared for the heating installation in his small house to break soon and had to ensure that his young sons could lend him the money. He could see a very early retirement in his future and a sad life as a trembling man unable to help himself. 

Then he met me. I had helped people with sclerosis and other chronic diseases and was willing to see what I could do for Michael and Parkinson’s

disease. It took 1 year before Michael had convinced himself that this was the right step to take.

I started examining if his symptoms were stress-related by a scientifically proven technique to reduce cortisol – the body’s stress hormone. Yes, I could stop his tremor for shorter or longer time every time we tried this technique. This tells me that his symptoms is stress related.

After this test, I asked him if his symptoms were varying. Michaels symptoms often varied a lot during his day. I asked him about his peak symptoms. My theory is that there is always a reason for this extra level of symptoms.  

For example, Michael told about a considerable tremor due to a visit to a cafe, big symptoms watching a football game on the television, or big symptoms talking with customers at his job. By being very interested in small details as time, place, event, and persons related to his symptoms peaks, we found the root cause of every peak of his symptoms. Embarrassment, excitement, pressure, or anxiety was often connected to the peaks.

I helped him remove several traumas and stresses in his life by us investigating the peaks of symptoms. Gradually, he gained an understanding that his tremor was stress-related. As therapy progressed these symptom-peaks slowly disappeared.

Present state.

It is now two years since I started the therapeutic treatment with Michael, where he all together had twenty sessions with me. 

Michael has a stressful job that involves daily contact with customers, on the phone and in person, and a very social workplace with normal challenges from making presentations to his colleagues to eating lunch together.  Michael is now very aware when his symptoms set in: When he is nervous about presenting to his colleagues at meetings, when talking to disgruntled customers, when getting stressed about complex problems and even at home when getting excited about the outcome of a sports game.

We talked in sessions about his daily life, and how he experiences his Parkinson’s symptoms. They are mostly on his right side. His right-hand tremors pretty much constantly, and quite violently when it is time for a pill. His left foot might cramp a bit when walking the dog in the morning, before the pill starts to kick in. If he forgets to take a pill before going to bed, he wakes with tremors.

Michael knows that sleep and exercise are important for his well-being and the level of tremors that he experiences. He needs to sleep for 8 hours to have less tremors. And if he exercises daily, he also experiences that it is easier to keep the tremors down.
This was my clue: Michael had different levels of tremors and they varied from situation to situation. We talked about his beliefs and values, decisions made while growing up and how he handled it emotionally.

After the Parkinson’s diagnosis, Michael decided to try and keep his symptoms down, “you have to live with your infirmities and try to move on”.  When I challenge him on how he feels about a certain event or situation, he talks about what happened, and what he did. It seems that he developed a strategy to close down his feelings, and he is unused to talking about them.

I told him about traumas. When they occur, your body goes into shock, and you are not able to feel your feelings. If you don’t recover properly from a trauma, you will stop registering what happens in your body and only ‘live’ in your head. This makes you very clever, but it is not a healthy solution for your body.

An important part of my coaching Michael I to make him aware of what happens in his body. I use the technique of “body scan”, where we go through the body bit by bit, to enable him to feel his emotions.  During our sessions, a number of traumas present themselves, and we work on understanding them and minimizing their impact.

I have a technique that is excellent when working on symptoms like tremors, or violent experiences that make you stressed. You start by identifying a situation, e.g. Michael meeting with a disgruntled customer, and then you ‘talk’ the reaction down to a calmer level. You may repeat this technique or more powerful ones on the same situation several times, until the stress of the situation has evaporated, or until the tremor has diminished in intensity.

Michael had adapted his life to his disease, he avoids walking the dog before 7:30 because he fears meeting his neighbor, who might see his shaking. He no longer eats soup in the company cafeteria, as he finds it embarrassing that his colleagues may see him spill his soup.
We talk about these choices. In our talk, small and bigger traumas from his life pop up, and we eliminate them.

At home he also tries something very challenging: to let his body just shake! When he gets excited about the outcome of a sports game on TV, he just lets his body shake, letting the tremor go to the end without trying to stop it. It is a new experience, just letting the body do what it wants to do, and not let his mind take over. He found that after 5 minutes his hand stopped shaking, and it was a liberating and new feeling: Wow, the hand stopped when it got tired – for a while. The tension was resolved. The body wants action, that is why you are shaking extra from being stressed, and activity helps the body to reduce the tension.

As with many other clients, it turns out that Michael has a fairly long list of traumas that we work on. They are not major, but they have all affected his life and choices. Some of these choices turn out to affect his stress levels, and in the long run, they have affected his body. As we talk about these symptoms, Michael understands the connection between shutting down his emotions/ignoring tension and having tremor. He also understands that if you don’t listen to your body, your body will eventually make you listen by bigger and bigger symptoms. This is a life challenge that all people meet sooner or later in life. Every person has a unique set of symptoms all influenced by stress.

I worked with Michael during a year, and even after we stopped the sessions, he experiences progress as his awareness grows. He now knows exactly what to do to get better. He recognizes that stress is a major player in relation to his tremors.  I have provided him with a toolbox that enables him to manage his tremors, many of his anxieties have been removed or diminished, and he is confident about his future.

His tremors have reduced by more thatn 80%, and his neurologist now questions whether he has dystonia related to Parkinson’s or normal cramps as an expression of stress.  He has found that if he walks the dog barefoot, gravel and grass stimulate the muscles in his feet. It turns out that he needed to develop these muscles, and after having worked on exercises he now experiences less dystonia in his feet.

Michael has become more aware, more confident and is in the process of changing his identity from being a victim to becoming more himself. As most people, he experiences challenges every day, and a busy life with his job, family and 4 children, and it is difficult to find time to work on his own stress.

Keeping the stress down, handling the situations at work, keeping him on top of the situations that trigger his symptoms. I have taught him the tools, and he now needs to keep practicing, perfecting the technique that helps him towards the life he wants to live.

Do you recognize yourself in this description?

Maybe I can help you, too?

I invited Michael to a 20 km walk in November. He had no symptoms during the walk and no problems with the 20 km long distance.  You can see the pictures from the walk. You see a man that is healthier than before his diagnosis.  

He gave me an update during the walk. He only has symptoms maybe twice a week. He brushes his teeth with his right hand again, eats with his colleagues again, and enjoys the company. He gets more tasks at work. His manager can also appreciate that he has recovered.

He has regained hope and courage and now looks forward to the future.

As Michael is local, I can take these pictures, but I have clients worldwide with a chronic disease that can tell similar stories. They are all on a journey where they, at their own speed, reduce their peak symptoms one after the other.

If you cannot wait for this to happen then read about my course:

I coach after this model:

The HOPE Shortcut course

I have realized that it is too expensive for most people to get the most effective

help as is therapy. My desire to help as many people as possible was in jeopardy.

Then I got the idea that I could make an online course teaching about the theory and

my findings on how people worldwide reduced symptoms. There are other ways

where you can help yourself reduce these symptom peaks. Maybe not as effective

as a therapy, but doable.

I have created the online course that follows this model. The course is for the those that want to join the growing population of Parkinson’s people that are reducing their symptoms.

I invite you to do the work together with me and discover better health.

• I will show you a structured way on how to get closer to smaller stress symptoms and a life in better health.
• I will give you 4 different strategies to choose, as we are all different, so it is to respect your preferences.
• I will support the instructions and excises with an easy-to-understand theory on so you will understand how and why it works.

My clients all begin to understand that the world looks somewhat different than most people imagine. Of course, you can reduce your symptoms if you are willing to do what is needed. I will not promise too much, but you will get the fastest result if you have symptoms that vary during the day. There must be a reason, and that is the key to your recovery.

There are two ways to proceed. You can take the online course where I, in short videos, explain how you can reduce symptoms yourself. You can also take the most effective way by 1:1 therapy and coaching with me.

Doing therapy online is an easy and time-saving way to meet. You do not waste your time on transport, and it works as good as if we met locally. We are only a few therapists in the world who have specialized in helping people with chronic diseases, so this is the only way you can get a coach who knows your needs and how to reduce symptoms.

My online course comes with lots of self-help tools. I teach you all my knowledge on how you can proceed yourself and give you the theory about why it is working. I call my online self-study course for “HOPE shortcut” as  HOPE is needed to break the beliefs about your disease, and “Shortcut” is

because it builds on all my knowledge and experience.

Maybe you have heard a person who has broken the statistic of your disease and is now close to symptoms free. I will tell you how they did it. You will learn a different way of understanding health and the Shortcut to break your symptoms’ progress and maybe even get smaller symptoms.

November 2020