Surviving Dystonia with Cannabis: A Survival Story by Marguerite Arnold

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Back in the dark ages of 2008, before Colorado and Washington State began their markets and Dronabinol (synthetic THC pills) were rescheduled to a Schedule III drug, I got sick. I had just lost my six- figure job on Wall Street and along with it, my health insurance – the first time in my adult life I had actually had comprehensive coverage.

It started with a pain in my jaw that my dentist insisted was a bad case of TMJ that would probably go away soon, but there was nothing he could do but tell me to buck up.  Within six months, I could no longer speak and frequently lost all control of my swallowing muscles (resulting in uncontrolled drooling as well as chronic pain that limited my ability to move my left side or walk without horrific pain.)

I hurt all the time.

I often went days without sleep, lying in my bed and dreading the next “call of nature” trip out of bed.

The Diagnosis


The neurologists I managed to see (at $600 a pop) all came back, for months, with “we don’t know what on earth this is,” (or worse) “are you sure that this is not imaginary?”

By the time I was diagnosed with Dystonia (by my neighbourhood clinic – not by a neurologist in any hospital or private practice in New York City) I was also told, at the age of 40 that I had a rare movement disorder, and the best I could hope for was to learn how to be content with sitting for the rest of my life in a corner, unable to speak or move.  There was nothing they could do for me.  

Tough luck.

None of the drugs I was presented with worked.  I was allergic to all of them – throwing up, breaking out, passing out (or even more excitingly all three at a time).  After I tested allergic to Botox and refused brain surgery, they literally gave up.

Nowhere to Go, No One to Help

My family, never exactly a nurturing bunch told me I could go homeless, or, failing that, tried to get me committed for life (in an insane asylum).  Several times.

I was not worth saving, buying healthcare for, or even taking in and being taken care of.  A woman who can’t speak?  Whatever.  One less.

I was also turned down for disability insurance. That’s just for Boomers anyway.

I lost everything I owned, all my savings.  The state department of rehabilitation services refused to accommodate me (in flagrant violation of city, state and federal disability law).  When I pointed this out, they referred me to a psychologist who told me (after looking at my medical records with the diagnosis from doctors in the same state) that I didn’t really have a movement disorder – it was all a figment of my imagination.  I drooled on his carpet.

Facing the street, and increasingly desperate, I spent my time in between looking for help on the outside by going online, and doing all the research I could manage every day. I knew there had to be a solution. I refused to lie down and die.

Miracle Solution that Saved My Life

prescribe medical marijuana- dystonia

The turn in my story came about four months after I was finally diagnosed.  I found out all I could about a rare neurological condition that they still don’t really understand.  I remember the night, vividly, that I typed in “federal trial, dystonia, and marijuana” too.  And sure enough, in Canada, I found one – although they were using dronabinol.  

The study was funded, of course, with U.S. federal dollars but taking place, conveniently outside the United States.  Remember,  marijuana is a “life threatening, dangerous, addictive drug with no medical efficacy.”  All the trials using the drug in New York City where I lived at the time (and unlike the Canadian study used actual cannabis) were set up to study “addiction.”

I sent the female neurologist running the Toronto trial a desperate email.  I was not local, I told her, but if she could possibly write an email I could take to my neighborhood clinic, I was ready to try the impossible.

In less than 24 hours, I had my email.  It took me a full day of waiting in my neighborhood clinic for a doctor to see me again.  I told them (creatively, in writing, because I could not speak) that they had no choice but to deal with me.  I was going to wait there until they saw me and dealt with the new evidence and backup I had.  

Six hours later, the clinic doctor reluctantly signed my first script – she knew my face, and she also had a copy of my chart and a full medical history of the torture I had already endured.

The night I got my prescription was the first night in many months where I got a good night’s sleep.  I could speak more or less understandable after two weeks.

Rebuilding My Life


I still faced an unbelievably tough battle.  It took me several years to finally manage the condition, and I was lucky.  I did the impossible.  I was literally cured.  But then the next problem.  I could not get a job.  I tested positive.

In 2013, however, facing poverty, a horrifically abusive family (who was still trying to do me harm), a state government who refused to pay me for helping them obtain a federal grant (because of my medicine) and the future of looking for a job in the U.S. against all the stigma that still exists against patients, I made it out of the country to Germany.

I have been here ever since, with no plans to return.  Since I have been here, I have continued to improve to the point where I do not need to take medical marijuana anymore. I have no pain.  I work out usually daily.  I have started to write covering the industry and reform just about everywhere.  I wrote an eBook about the pace of reform in the U.S. in 2014 that I self-published.   

Last year I was also accepted into a graduate program in Frankfurt and I am now six months away from obtaining my EMBA and more or less fluent in German.  My business plan, that I am writing to complete my master’s degree, is to create a high-tech platform to enable very sick German patients to obtain all their prescriptions, starting with medical marijuana (which will be rescheduled and covered under health insurance as of next year) in a way that improves care and saves money.  Reform is happening slowly here, but it is happening far more comprehensively than it is in the US… There is no drug testing here.

My case to obtain co-citizenship as the child of a holocaust era German Jew (my father) is still pending in Constitutional court.  There are still a lot of variables and questions in my life.  I am broke, with student debt at the age of 49.   

But I am alive.  I am well.  

And I am going to make it.

I have come too far not to.

I love this country and my new city.   I plan to stay.  I know I am home.  As they say in my new “sprache,” Deutschland ist meine Heimat (my homeland).  

I know I was unbelievably lucky – even though my American life was absolutely destroyed.  I got well and  I restarted my life.  I can speak – and in another language.

It shouldn’t have to be this way.  But right now, in the U.S. it still is for literally millions of patients who were not so lucky – and even more tragically it will continue to be this way until the stigma around this drug is ended. I refuse to be quiet until it has been.

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Marguerite Arnold

Marguerite Arnold

Marguerite is an American expat. She has worked in digitalization of two industries (film and finance) for over 25 years as well as a professional journalist and writer. She lives in Frankfurt where she is also just finishing her Executive MBA at the Frankfurt School of Finance and Management, working as a freelancer and writing a medical marijuana/FinTech business plan. She published her first ebook on the pace of marijuana reform last year.

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