2021 Seminar and AGM
It is with great sadness but also a sense of gratitude that the New Zealand Dystonia Patient Network (NZDPN) acknowledges the lifetime contributions of Philippa Hooper. Philippa was a treasured friend to all of us in the NZDPN. As one of our founding officers she was determined and tireless in her work to support, encourage and seek answers for family, friends and complete strangers.
Philippa initially served as our Treasurer and later as Network Manager until her retirement in 2019. Many of our members will remember her as their first point of contact with the Network. As our Network Manager Philippa was the one who answered calls and provided helpful advice and support to those who were wondering how to cope with the onset and long-term consequences of dystonia – both for themselves and on behalf of family and friends. Philippa had a particular interest in helping children and young people with early onset dystonia.
We counted Philippa as a close friend and a role-model for her work as a volunteer to help others. In most people’s lives they are only truly influenced by several dozen others, and Philippa was one of these – always positive, motivated, a close confidant and driven by a desire to help others. She will be greatly missed.
Farewell Philippa, and thanks for the memories.
Everyone's talking about Cannabis
Dr. Shaun Holt holds Pharmacy and Medicine degrees, has been the Principal Investigator in over 50 clinical trials and has over 220 publications in the medical literature. He is the Scientific Director and a founder of HoneyLab and an advisor to several pharmaceutical companies. He has started two clinical trials organizations and formed Research Review, a company that produce reviews of medical research. Shaun is the author of 11 books including the bestseller “Natural Remedies That Really Work” and new book “Medical Cannabis – a brief guide for New Zealanders”. He was a finalist in the 2015 New Zealander of the Year Awards in the Innovator category and a finalist in the 2019 New Zealand Entrepreneur of the Year Awards. In 2020 Shaun featured on the global Netflix documentary series (Un)Well. ——————————————————————————————————————————————————
Cannabis has been used for medical and recreational purposes for hundreds of years. It was legal in many countries 100 years ago, and then it mostly became illegal…..and now it is generally becoming legal again around the world. In New Zealand it is legal for medical purposes, but in practice few products are available, few doctors prescribe it and it is expensive. There have been hundreds of studies of cannabis for many medical conditions, but other than for pain and nausea there is a lack of proof that it is effective. However, given the hundreds of thousands of people who use it for medical purposes, in my view it is likely to be the case that it is a matter of time until it is proven to be safe and effective for a variety of conditions.
Some people are not aware that we all have cannabis chemicals naturally in our bodies, called endocannabinoids. They are a completely normal part of the way our body regulates itself. This is an important point: yes we can take cannabis products containing cannabis chemicals (called cannabinoids) into our bodies, but there are already cannabinoid chemicals in the body. It is the same with steroids, as we can take steroid medications and these supplement the steroids that our bodies naturally produce. Cannabinoids are involved in the regulation of many systems in our body including: appetite, pain, mood, memory, appetite, immune response and sleep. The endocannabinoid system also modulates neurotransmission involved in motor function and some studies have shown that it can help with some disorders of muscles and movement. For example:
- ● Spasticity – this is a condition in which some muscles are continuously contracted causing stiffness and tightness in the muscles and interfering with normal movement. It is one of the most troublesome symptoms associated with multiple sclerosis (MS) and there are many anecdotal reports of people with MS using cannabis and seeing good results. In the UK, around a half of people with MS have used cannabis, usually to treat their symptoms, and several studies have found benefits.
- ● Tourette syndrome – the main symptoms of this condition are uncontrolled movements and/or vocalisations called tics. Many people have reported improvements when taking cannabis.
- ● Parkinson’s disease – movement issues in people with this condition include tremors, rigidity and bradykinesia. There is evidence that cannabis can help from laboratory studies, animal studies and some small studies in people.
- ● Amyotrophic lateral sclerosis & Huntington’s disease – there are reports and stories that cannabis can help with the movement problems resulting from these serious but rare diseases.
And so, can cannabis help people with dystonia (defined as a neurological movement disorder characterised by inappropriate and involuntary muscle movements)? A recent paper published in Neurological Sciences addressed this issue . In the paper they discuss the case of a 44-year-old woman who was suffering from neck pain and involuntary rotation of the head. Muscle relaxant, non-steroidal anti-inflammatory and anxiolytic medications were ineffective for her. She started smoking cannabis on a daily basis and noticed a gradual improvement of her dystonic symptoms, and she actually had a complete remission of both her motor and pain symptoms in just 2
weeks. In an attempt to clarify the role of cannabis in her remission, her doctors and the lady decided to withdraw cannabis. Around a week after cannabis was stopped the symptoms returned, but they disappeared again a week after re-starting cannabis.
The authors of the paper reviewed the medical literature and found only 5 small studies of cannabis for dystonia with mixed results:
- ● a study of 5 people that found benefits from medical cannabis in some people with blepharospasm 
- ● another study of 5 people with various forms of dystonia found benefits from taking cannabidiol (CBD) 
- ● a study of the synthetic cannabis drug Nabilone was not effective in 15 patients with idiopathic dystonia 
- ● another synthetic cannabis drug was not helpful in a study of 9 people with cervical dystonia 
- ● and a case study described how a professional pianist with focal hand dystonia was helped by THC 
And so the take home messages from this review and other papers are that there has been little research and it is simply not known if cannabis can help with dystonia. However, there are hundreds of stories on the internet from people who have found it to be very effective, even life-changingly so.
The question for people with dystonia is therefore: should I try cannabis? (A further question, if cannabis is going to be tried is: which of the many products should a person try, but that would require a whole new article. This is covered in detail in my book on medical cannabis ).
To answer that question, some of the factors to consider are:
How effective and safe are standard treatments? – if there are existing treatments for a condition that work really well and do not have significant side effects, then it is probably not worth trying cannabis, as what would the upside be? However, there are many diseases where we do not have good treatments, or the treatments are OK but the side effects are terrible. In these cases cannabis may well be worth trying as it could potentially be better than what is on offer.
Have you tried standard medical treatments and did they work? – related to the above, regardless of whether health care professionals think that standard medical treatments are effective or not, what was the person’s experience when using these standard treatments? People respond differently to treatments and even if a treatment works for 95% of people, that means some people will be unlucky, will not benefit and so cannabis is another option.
What are the potential benefits & risks? – there are always risks and benefits when using any medical treatment. Aspirin can help with headaches and perhaps reduce the chances of having a heart attack….but it can cause a stroke or stomach bleeding. The risks of cannabis may outweigh the potential benefits and this is especially true if it is smoked when it could for example cause lung cancer if smoked in large amounts over several years. But on the whole it is remarkably safe  and these risks should be considered alongside any improvements in symptoms or quality of life.
What happens when you try it? – no treatment works for everyone, we are all different and so there is certainly merit in trying cannabis to see if it helps. This trial and error approach may not be scientific, but it is often the way that doctors manage their patients. For conditions such as high blood pressure or pain or asthma, doctors will start by prescribing what they think are the best treatments, but if the results are not good enough, they will try another treatment and see if that is any better. It is possible to be fooled into thinking cannabis works when maybe it does not when doing this trial on yourself, due to factors such as the placebo effect, the natural history of the symptom etc. On the other hand, if there is no apparent benefit from the cannabis then the person has at least tried it and can conclude it is not for them (or at least the specific product/dose/delivery system is not for them, others may be effective).
To conclude, if I had dystonia, would I try medical cannabis to see if it helped? Yes, definitely.
- Mascia, M. M., Carmagnini, D., & Defazio, G. (2020). Cannabinoids and dystonia: an issue yet to be defined.NeurologicalSciences, 41(4),783-787.
- Radke PM, Mokhtarzadeh A, Lee MS, Harrison AR (2017) Medical cannabis,a beneficial high in treatment of blepharospasm? An early observation. Neuroophthalmology 41:253–258.
- Consroe P, Sandyk R, Snider SR (1986) Open label evaluation of cannabidiol in dystonic movement disorders. Int J Neurosci 30: 277–282.
- Fox SH, Kellett M, Moore AP, Crossman AR, Brotchie JM (2002) Randomised, double-blind, placebo -controlled trial to assess the potential of cannabinoid receptor stimulation in the treatment of dystonia. Mov Disord 17:145–149.
- Zadikoff C, Wadia PM, Miyasaki J, Chen R, Lang AE, So J, Fox SH (2011) Cannabinoid, CB1 agonists in cervical dystonia: failure in a phase IIa randomized controlled trial. Basal Ganglia 1:91–95.
- Jabusch HC, Schneider U, Altenmüller E (2004) Delta9-tetrahydrocannabinol improves motor control in a patient with musician’s dystonia. Mov Disord 19:990–991.
- Holt S, Dalton E. Medical cannabis – A brief guide for New Zealanders. 2019 Published by Potton & Burton. ISBN 9781988550077