Time to find a path to healing

This is my story

I have a neurological disease, it has been variously labelled

Tardive dystonia, tardive dyskinesia, Choreo athetoid movement, Functional disorder, Depression, Conversion disorder, ideopathic movement disorder

We are in the process of testing for Stiff Person Syndrome +/- PERM.

An auto immune neurological condition. This is firming as the current favourite

Whilst fiercely against the Medical Treadmill, I have been require to engage with and a medical profession who will not help improve the experience regardless of it’s name

This has proven to be a gift however, as because of their inability to tick a box and their reliance on tests rather than clinical expertise and listening, I have had to seek within and listen to my body

There is not an area of my life that is unaffected but I remain mentally powerful

I am now taking an alternative route and part of my treatment is marijuana. The times when I have been most unwell have been the times we haven’t been able to source it

Marijuana  enables me to eat

Marijuana stops my nausea

Marijuana reduces my pain

Marijuana minimises my stiffness

Marijuana enables me to walk normally

Putting marijuana in the hands of a Medical Profession, Govt and Big Pharma takes away our power to heal ourselves.

It is time to stop abrogating responsibility for our Well Being to people external to ourselves.

The Medical Industry is a powerful, wealthy force that wants to keep control of the individuals Well Being.

It is time to stop putting great wealth into the pockets of this industry at the expense of the sick

They know that if we are allowed to grow marijuana ourselves it will reduce their incomes.

As we , the individual take  responsibility for our health

Medical marijuana has many wonderful properties that work with our naturally occurring cannaboid receptors .

Legalise it’s use and less us manage it ourselves. We are not stupid. We are awake and aware

An open letter to Neurologists,


The irrelevancy of names.


It doesn’t matter what type of movement you call it:

Dystonic, Dyskinesic, Athetoid, Functional, Choreic, Movement disorder, Conversion, Dyskinetic, Clonus, Jerk, Tic, Basal Ganglia disease,


It doesn’t matter what your textbooks call it:

Dopa Responsive, Primary, Secondary, Tardive, Paroxysmal, Psychogenic


What matters is our experience of it

…….and in the main you have very little knowledge of our experience of it

…..our lives


….and then you decide:


With this label you get this

With this label you don’t

With this label you get these benefits

With this label you don’t

With this label you get compassion

With this label you don’t


There are too many stories unheard

There is too much pain caused by your labels