Travelling the world can involve a lot of logistical and financial planning for anybody. But for Diann Wilbourne-Kay, it involves so much more when she has to consider her needs while living with the chronic condition, Charcot-Marie-Tooth disease (CMT).
Alongside her husband Dean, Diann is planning life on the road. Married for over 30 years, the couple hope to sell their home, embrace full-time motorhome living and explore the world together. Despite Diann’s progressive, incurable condition, which affects her muscles and mobility, she remains determined not to let CMT rule her life. Through their journey, which the couple aim to document online, they hope to raise awareness of CMT, challenge disability-related barriers and inspire others to pursue their dreams.
What is CMT?
Charcot-Marie-Tooth disease is commonly referred to as CMT. It is a neurological disease which affects the peripheral nervous system and is a progressive condition that worsens over time with age and can cause other problems associated with age.
CMT affects the legs, ankles, feet, hands, fingers and forearms, and in severe cases it can affect hearing, vision, and the diaphragm, which can lead to breathing difficulties.
Speaking about her own experiences of living with CMT, Diann said: “For me, I am affected by all of the above. However, I also have muscle wastage, foot drop, physical deformities, poor balance, and loss of feeling in my hands and feet. I am constantly cold and have loss of fine motor skills, such as using my hands properly, all of which is attributed to CMT.”
She continued: “Growing up as a child was challenging for me as CMT affected my everyday life. I couldn’t do most things other children could do, which made me feel rather isolated at times. I couldn’t do sports, and I was always the one nobody wanted on their team due to my limited abilities,
“But no one knew what I had back in the 60s and 70s when I was at school. It wasn’t until my late teens, at the age of 17, that I finally got a diagnosis, initially, that wasn’t CMT. It was given various names until eventually the disease was named after the three scientists who discovered it.
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Planning for their accessible adventure
Diann and Dean want to visit as many places as they can. They have no borders or places they don’t want to visit. Dean has been an international lorry driver most of his working life and has seen so much beauty in this world. He told Diann about the things he’s seen over many decades. Driving is a passion for him. So the couple has a dream to see those wonderful, amazing sights together whilst Diann is still able to do so.
“Our biggest obstacle we can see is the new 90 to 180-day rule since Brexit, which will be challenging and will need lots of planning,” said Diann. “So the world is our oyster! We will be mobile. Our home will just be on wheels.”
The pair have a two-year planning period, which consists of figuring out and finding a suitable accessible motorhome to travel in. So far, they’ve narrowed it down to a couple of hundred variations and configurations. To help finance their trip, they are even considering downsizing or selling their home. The couple will also need to make decisions on things like solar off-grid capabilities, gas flow, racking storage, lithium, plus much more.
Diann admits that “what lies ahead for us is an epic task, and that list of to-dos just keeps getting longer… the list is endless, and we need knowledge, but you can’t buy that, I’m afraid.“
Therefore, the couple are reaching out for support, advice and funding from individuals, organisations and businesses who are keen to help them on their adventure.
Diann added: “Support can come in many shapes and forms, be it verbal or help with planning, or even support from groups or affiliations with groups and companies who are relatable to us and our dreams, such as off-grid power, portable power, self-levelling, disability modifications and aids, absolutely anything.”
“We are open to working with other people and collaborating with businesses that see us as an interesting life story, that aligns with their company or ethos and which is relatable to them and others.”
They welcome connections with disability organisations, CMT groups, motorhome specialists and companies offering mobility aids, accessible adaptations, storage solutions, off-grid power, insurance and travel services.
They are particularly interested in paid partnerships, sponsorship and advertising opportunities with brands whose products and values align with their journey. In return, they can offer authentic storytelling, social media and YouTube promotion, product reviews and advertising space on their motorhome, creating mutually beneficial collaborations that raise awareness and reach relevant audiences.
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Raising awareness of CMT and breaking down disability barriers
The easiest way most people can start supporting Diann and Dean’s accessible adventure is by following them @MotorhomeVistas across their social media channels, which have just recently been launched in the past couple of weeks.
The pair aim to document their journey along the way, recording every experience in a journal which could be turned into a reference book for others who may be considering a worldwide accessible adventure.
Additionally, as former pub owners and triple winners of The Fine Food Award for Lincolnshire, as well as Dean being a self-taught cook, the couple are also considering creating some cooking content on their travels.
During their trip, Diann and Dean also want to raise awareness of CMT worldwide, break down the stigma and barriers of living with a disability, and showcase accessible ways to travel the globe.
Diann said: “We want to prove to others, not just the CMT community or even the disability community, but to everyone, that everything is doable and achievable if you just put your mind to it. You can and will overcome everything if you plan, and planning is key.
“We want to break down barriers about the stigma associated with CMT and disabilities and show that we are ordinary, normal people. We have feelings and compassion for others, but most of all we want to provoke questions about CMT, which is personally relatable to us because doing so would evoke conversations, and without those difficult questions or conversations we wouldn’t be able to promote ‘inclusivity for all’.
“If we can get one person, just one person, to see our vision, tell others, inspire others to have those difficult conversations, to open up and see people as equals and not to pity people and instead encourage them to follow their dreams and then they go on to inspire others themselves, we will feel immensely proud of ourselves.
“I also have a motto, and that is you don’t have to look far to find someone far worse off than yourself, so be grateful for what you have.”
To join and support Diann and Dean on their accessible adventure around the world, follow them across Facebook, Instagram, TikTok, Threads and YouTube. You can also contact them by email at youmeandcmt@gmail.com or by calling them on 07813908444.