Raynor and Moth’s Story

“It was easy to brush off Moth’s initial symptoms. He had a physical job so when he started experiencing pain and numbness in his left shoulder and arm, we thought it was a torn ligament or some sort of nerve damage.

“We trialed different therapies for around a year before things started to take a different turn. The loss of dexterity and development of a tremor, led to Moth being diagnosed with Parkinson’s, and we lived with that diagnosis for around a year. When the medication failed to make a difference, investigations were opened again.

“Moth received his CBD diagnosis in 2013. By that point he was 53 years old and had been experiencing problems for around two years.

“The explanation of the diagnosis was quite vague. The main thing that stuck in my mind about it was the fact there was no treatment and no cure.”

“It had already been a confusing journey. You settle your mind on a diagnosis and start to adapt and then you find out it was something else. Something you’d not heard of, which seemed difficult to plan for due to the very individual nature of how it can progress. So, we didn’t know what to expect at all. Moth didn’t want to know too much, rather focusing on the here and now, but I couldn’t stop googling the condition.”

“Physio exercises became a real focus, with Moth repeating the exercises several times a day, keen to improve and maintain his strength. At that time, it felt like it was the only thing he could do.

“As we began our coastal walk, Moth’s strength and mobility had deteriorated. The pain and numbness had moved down his left leg and into his foot, often the issues leading him to lean to the left and drag his foot. He also was struggling to raise his left arm so couldn’t get a coat or his rucksack on without help.

“What we noticed during our walk, was the regular movement did seem to have positive effects. Around 200 miles in, Moth noticed he didn’t need help with his rucksack anymore.  He was also better on his feet, with his left foot dragging far less than it had.

“This is something we had to learn and work out for ourselves though. That’s the main frustration we’ve had throughout this journey. Feeling very alone due to the lack of awareness and understanding of CBD within the medical community. It feels unfair that you must be the expert, informing the professionals about the condition, what works and what doesn’t. Continually having to repeat what is wrong and how it affects Moth can be exhausting.”

“When we heard PSPA were looking to create a step change in research and awareness of PSP & CBD, we knew we had to get involved.

“The fact they want to change outcomes for people is really reassuring to us. From our own experience, which we know we are not alone in, we can see how developing a faster and accurate diagnosis can be a real gateway to support. This would ensure support is there for the individual and family, at the right time.  Whether that be information, regular check-ups, physio or financial support.

“Establishing clear standards of care would also be a relief. We tended to lean more on the internet for answers than we did healthcare professionals. Often when we asked questions, we were met with blank faces which was heart-breaking.

“Investment in research is the real game changer here. It can help improve understanding of CBD and give answers and solutions to questions we’ve had for years. It can also give people insight into what they can do themselves to maintain their independence as long as possible.”

RESOURCES

Raynor and Moth’s experience is being brought to life in a film adaptation of Raynor’s memoir ‘The Salt Path’. The film is being launched in the UK in April 2025.

You can read more about The Salt Path film and how Raynor and Moth are supporting PSPA below.