I’ve had MND 5/6 years, although I was only officially diagnosed at the end of 2018 by Dr. M Hennessey, senior neurologist in Galway University Hospital.
Most people with MND are dead within 5 years of first symptoms, so I’m doing well. I’ve been practicing meditation for 30 years and when I noticed the first symptoms of tremors and mobility difficulties, I responded to them with physical exercises, meditation and marijuana. I found the marijuana good for the tremors and the twitches, it would calm them down. The illness is degenerative and my health degenerated. I was admitted for hospital in 2017 to find out what was causing the loss of mobility, the exhaustion, the increase in tremors and new difficulties in concentrating. They found extensive motor neuron damage in my right leg. And told me that it was a mystery/miracle that I was able to walk at all. I made the mistake of telling them why I still mobile – cannabis. It was quietly admitted that cannabis “is better than anything I can prescribe for you” by the consultant at the time. Since then there has been a campaign to portray as a person suffering from anxiety. Their trick is to create a negative reputation of me in order for people to dismiss me and not listen. The stress with being treated inhumanely makes the illness worse and the difficulties that I have to deal with more. Disgusting to treat a human being with such prejudice because I am saving my life and that is more than they can do for their patients.
Since then I have lost my walking ability four times and I keep getting it back, limited in speed strength and duration, but I’m still walking. Last year they found damaged motor neuron cells in my arms, so the illness has spread. I don’t call it a disease, there’s no pathogen, but it spreads like a disease. I call it what it is, a disorder of the endo-cannabinoid system. 6 years ago I finished a degree in Pure Maths and Philosophy, so I’m used to studying and dealing with information. I have found out that the reason why cannabis works on so many difficult to treat illnesses is because they are all in part endo-cannabinoid illnesses. So maintaining a fixed amount of cannabinoids in the body stabilizes the endo-cannabinoid system and the symptoms of the illness are reduced.
At the end of 2018 I was hospitalised for the 4th time. I had not been able to get the medication that my life is dependent on and my health went downhill, eventually I could hardly speak due to slurring, or walk or breathe. The neurologist did an emg test and found the motor neuron damage had spread through my body and gave a diagnosis of MND. 6 weeks later he expressed his very real surprise at how much I had improved. Despite the improvement, my life is still destroyed by this illness. Cannabis is giving me a second chance. THere are 350 people diagnosed with MND in Ireland and at least that many undiagnosed. Many of these people would get a chance of having their lives spared from the devastating destruction of this illness if allowed. The HSE and the people that run it do not care about how people live, they don’t care about their patients dieing, they care about their career, they don’t care that there’s effective treatment they care about not rocking the boat, they don’t care about reducing suffering, they care about being in control, being obeyed.
Obeying the consultants would lead to my untimely death. I have the right to live my life. I have the right to take the medicine that I need in order to live. Whilst medical cannabis use is not legal for me in Ireland, it’s the only medication that will allow me to type, walk, talk and have some quality of life before I’m dead. I take capsules that are a combination of cannabis oil and coconut oil. The cannabis in this form binds with the coconut fat cells and are easily transported all over the body including passing the brain/blood barrier into the neurological system.
All I want to do is live