It was definitely before 2010, but I can’t remember exactly, when we met.
Dr Marie-Helene Marion, consultant neurologist specialising in movement disorders (now retired), especially dystonia, and I were introduced and we got chatting.
It was the first of many, many conversations about dystonia, movement disorders and chronic pain.
We soon realised the commonalities.
Dr Marion was diagnosing dystonia and providing botox injections.
But there was something else. Something we could add to build on the effects of botox.
The coming together of diagnosis, treatment and Pain Coaching as a way of helping people ease their symptoms, transform their experiences, feel better, enjoy their lives and lengthen time between injections.
Some people stopped injections altogether.
Essentially, our focus was on the person living themselves better, far beyond just living with a condition and this being the main way they identified.
Living with a condition is one way of going about it.
It is quite another to live yourself better, which there are many ways of doing.
We created a new narrative.
Pain Coaching for chronic pain
I founded Pain Coaching for chronic pain as a way to help people improve their lives in specific ways.
No condition or experience is fixed because nothing is permanent.
No-one knows the future.
You can harness this truth in skilful ways in the day to day way of thinking and living.
In other words, you have the capability to decide the way you will go about your life.
The past brings you to here, but you decide your direction and how you get there.
Pain Coaching helps you understand your pain, clarifies your needs and goals, then we create a strategy and practice skills to bring it alive in your world.
Dr Marion and I realised this was the same for dystonia and FND.
People needed to know how to use skills to live their best life and continue improving.
For example, skills to:
- be active
- engage with meaningful activities
- be healthy and well
- deal with challenging moments
- ease symptoms
- improve movement
- work towards chosen goals
These skills can all be taught, learned and practiced, together with the know-how.
This is why coaching is so useful and powerful, because this is exactly what it does.
The spirit of pain Coaching
We know that helping a person transform their life requires an approach or spirit that puts you, the person first, sees you with strengths and capabilities, views you with unconditional positive regard, with the ability to change, and total acceptance of who you are as someone who will make your own decisions.
A coach helps, guides and encourages, forming a partnership with you. A caring collaboration.
You are the expert in you, your dystonia, your pain and your life.
The Pain Coach approach is infused with compassion, accurate empathy, understanding, judgement and a caring wisdom to help, offering a wide range of skills and tools and ways to move forward.
This partnership brings the necessary expertise for you to shape a positive future.
Coaching for dystonia
Bringing the same coaching spirit and approach to help people with dystonia and FND created a new narrative and way forward for people.
Both Dr Marion and I encouraged living, and then we looked at the specific ways of going about it on a day to day basis.
Once you have an understanding how how your body and body systems have got stuck, the ways forward become apparent.
Together we clarify your needs and picture of success. Then we can focus on the skills and know-how to follow your strategy.
We cover a wide range of areas, but always led by you because you know what you want to achieve and why it matters.
Many people with dystonia are given exercises, which are important, but only a small part of living yourself better. This is because an exercise programme takes a relatively small amount of your waking time.
The key to exercises and specific sensorimotor training is in how they are practiced. Preparation, focus, feedback and then recharge time afterwards. Plus, when they are performed through the day and used as a way to create better movement patterns. There is great detail needed to learn not only the particular exercise or movement, but also how it is best done in your world.
Think along the lines of learning a musical instrument.
Most of the skills learned in coaching for dystonia are practiced in your daily life as you go about chosen, important and necessary tasks. By design, they keep you in line with your picture of success as steps towards your goals, but also a way to be present and feel joy and happiness whilst building health and wellness.
For will over 10 years until Dr Marion retired, we collaborated with patients, helping them find a way forward in their day to day with skill.
Now Dr Tourame and Dr Baig have taken over the practice and botox injections, and I continue to provide the coaching to help, guide and encourage people to live themselves better.
RS