Australia resident Jason Jordan was finding life with primary progressive multiple sclerosis very difficult until his neurologist suggested he try medical cannabis
Looking back, I can tell now that I probably had primary progressive multiple sclerosis (PPMS) from at least the age of 21. It wasn't diagnosed until I was 40 but, in retrospect, many of the strange ‘illnesses’ I had experienced weren't ‘viruses’ or ‘ear infections’ as my doctor would always claim. I’d experienced things like a lack of balance, clumsiness, flat footedness and short-term memory issues.
One day, half of my face went numb and droopy. But it wasn't until the double-vision kicked in that I really got concerned. I had been working in IT for years. At that point, I was a very early adopter of having two large screens. One afternoon, my eyes would not lock back into stereo vision. Instead I had two separate vision streams. It took a good 20 minutes for it to become normal again.
So I jumped on Dr Google and worked out it was most likely MS. My GP wasn't so sure. But the neurologist identified a problem as soon as I walked in, managed to get me straight into an MRI, and was able to get me started on treatment within 48 hours.
Whilst I had read up on what MS is and what it was likely to do to me, like a lot of men, I felt bullet-proof. I'd been having all sorts of minor symptoms but I still believed disability would never happen to me. But it did, of course. Incredibly slowly at first, but it accelerated. So early on, I totally under-estimated where MS would take me. And for a long time I didn't deal very well with the symptoms. My mental self-image is of a passionate, capable, ambitious high-achiever – so you can imagine what the progression did to my mood and my demeanour.
By the age of 40, my wife and I had built quite a large technology company, but the progression of my MS was making it exceptionally difficult for me to live up to my responsibilities and deliver on the promises I had made. Confusion, cognitive problems, logic issues, memory gaps and fatigue meant I either had to stop being the Managing Director or the business was going to fall apart. So we were forced to sell. In retrospect, it was for the best as the technology support market has since died, but at the time it was soul-destroying as up until that point in time, I had defined myself by what I do.
By 2016, I had been on virtually every medication available for MS. The best any of them were able to offer was to slow down the progression of the disease, but until Ocrevus, I'm not sure any of them did. Certainly none of them treated the symptoms. For that, I was given opioids, antidepressants and other toxic, synthetic drugs that made me feel terrible.
Out of hope
In early 2017, my neurologist told me that we were out of options. He forewarned me that I was likely to be using a wheelchair in a matter of months. Then he said to me that we could try a new legal option – medical cannabis. I had been brought up my entire life to reject cannabis as a gateway drug with no medicinal value, but I had no other choice.
By the time I started on medical cannabis, I was using a walking stick, beginning to be incontinent, and having difficulty finding my words and then pronouncing them. I had terrible pain in my toes, fingers and cheekbones and the numbness and burning had grown from my feet to my sternum. I was often quite confused, and I was angry, frustrated and depressed.
I was so very fortunate to have a neurologist who cared enough to investigate all available options. A progressive, educated professor who knew that once the conventional options had been exhausted, the fight still needed to continue. He gave me an option. He told me to research it and then supported me in the convoluted process of getting a prescription. He was not scared of peer group pressure. He put the patient first and for that I am eternally grateful.
Since having medical cannabis, I am 80 per cent back to normal. I will never again be 100 per cent as my brain is physically damaged. There are many, many large lesions in both my brain and spinal cord, and medical cannabis does not have any repair effect on those. But it does have a massive effect of the majority of my symptoms. I have weaned off five of my seven daily medications. I no longer take Oxycontin, Baclofen, Sertraline or Pregabalin and I avoid taking Seroquel unless I have to. I still need Pramipexole, a Parkinson's-type of medication that stops the shakes I get of an evening, but I feel so much better as a result of not having to take so many medications. My anxiety is massively reduced from not knowing what effect the potential interactions of so many drugs have.
I take a relatively large quantity of legal medical cannabis oil every day, prescribed by my doctor. The benefits have, for me, been amazing. I no longer use my walking stick. I have balance and leg strength. I no longer have any pain whatsoever. My cramps and spasms are about 10 per cent of what they were. My memory is at least 80 per cent improved. Whilst I still have the occasional urgent need to get to a bathroom, it's no longer a ‘problem’. I am back to being the person I imagine that I am. I feel alive.
This is not a miracle drug or a panacea, but seeing as though it's legal here in Australia and has so few side-effects for me it's worth trying. It's been so good for me, I felt I had a responsibility to let other people know about it. I now apply most of my free time to being a patient advocate. I tell medical professionals like doctors, nurses, pharmacists and scientists about my experience, and I also talk to other patients and their carers about trying it. If it helps just one more person, I'm doing good work.
Is it legal?
In the UK, a drug called Sativex is licenced to treat muscle spasms and stiffness in MS, which is taken by mouth as a spray. The main issue with Sativex is accessibility as it can prove tricky to get as many doctors aren't keen to prescribe it. It is available via private prescription from a doctor. This can work out expensive, around £500 a month. Speak to your GP or neurologist about the possibility of trying this treatment.