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From reproductive rights to climate change to Big Tech, The Independent is on the ground when the story is developing. Whether it’s investigating the financials of Elon Musk’s pro-Trump PAC or producing our latest documentary, ‘The A Word’, which shines a light on the American women fighting for reproductive rights, we know how important it is to parse out the facts from the messaging.<\/p>\n
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Your support makes all the difference.<\/strong><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\nRead more<\/span><\/svg><\/span><\/button><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/aside>\n<\/div>\n<\/div>\nA father-of-three from Surrey, diagnosed with motor neurone disease (MND) and initially given as little as six months to live, is defying medical expectations eight years on. <\/p>\n
Paul Jameson, 65, is not only still “smiling” but is now determined to break the societal taboo surrounding death.<\/p>\n
The Godalming entrepreneur received the devastating diagnosis of Progressive Bulbar Palsy (PBP), a type of MND primarily affecting the face, throat, and tongue. Mr Jameson recalled that his “whole world fell in” upon hearing the news.<\/p>\n
His main symptom was initially slurred speech, which quickly led to a complete loss of his ability to speak. Due to muscle tightness, known as spasticity, in his legs and arms, Mr Jameson is no longer able to walk and now requires a wheelchair.<\/p>\n
At the time of his diagnosis in June 2017, Mr Jameson said he was given as little as six months to live and he decided to create a bucket list \u2013 he climbed Mont Blanc in the Alps and Mount Kilimanjaro in Africa and rode 110 miles in a day around Lake Geneva.<\/p>\n
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open image in gallery<\/span><\/button><\/p>\n<\/div>Paul with his family (left to right): daughter Rosie, wife Jess, Paul, son David and daughter Jo (Aura\/PA Real Life)<\/span><\/figcaption><\/figure>\n<\/div>\nAfter discussing Mr Jameson\u2019s \u201clegacy\u201d and end-of-life wishes, he and his son David Jameson, 32, decided to launch a funeral provider company called Aura in 2019, with the aim of helping to give people \u201cthe chance to face death with clarity, dignity and control\u201d.<\/p>\n
Speaking to PA Real Life through typing, as Mr Jameson has been unable to speak for the past five years, he wrote: \u201cI feel very blessed and lucky. I make the most of every day.<\/p>\n
\u201cMost people\u2019s funerals don\u2019t reflect how they spent their life.<\/p>\n
\u201cDon\u2019t mourn a death, celebrate a life.\u201d<\/p>\n
Up until his diagnosis, Mr Jameson said he lived an \u201cunremarkable life\u201d, but he enjoyed sports and was \u201creasonably successful in business\u201d.<\/p>\n
When he received his MND diagnosis on June 12 2017, which is classed as a terminal illness, he said his life became \u201cmore remarkable\u201d and it \u201caccelerated (his) living\u201d.<\/p>\n
His symptoms first started with slurred speech in the autumn of 2016, with his wife Jess, a GP, urging him to seek further medical advice.<\/p>\n
After an MRI scan and an electromyography (EMG), which measures the electrical activity in the muscles, along with other tests, Mr Jameson said he was \u201cdevastated\u201d to learn he had MND.<\/p>\n
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open image in gallery<\/span><\/button><\/p>\n<\/div>Paul (middle) with fellow climbers Jack and Mike on Mont Blanc – where the trio nearly lost their lives (Collect\/PA Real Life)<\/span><\/figcaption><\/figure>\n<\/div>\n\u201cI immediately started crying,\u201d Mr Jameson writes in his first book, Very Much Alive.<\/p>\n
\u201cMy first question was, \u2018How long do I have?\u2019.\u201d<\/p>\n
Hearing about his father\u2019s diagnosis, Mr Jameson\u2019s on David told PA Real Life: \u201cIt was a real whirlwind of emotions.<\/p>\n
\u201cNo family is perfect, but I\u2019d say we were a very lucky family, and it turned everything upside down.\u201d<\/p>\n
MND causes muscle weakness which progressively worsens over time \u2013 it is usually life-shortening and there is currently no cure, but treatment can help to manage the symptoms.<\/p>\n
The disease usually affects the limbs first, then the mouth region \u2013 but for Mr Jameson, with his specific PBP diagnosis, he said it was the other way around.<\/p>\n
He writes in his book: \u201cI now cannot talk, as my tongue and lips can no longer move. I also have difficulty swallowing and eating.\u201d<\/p>\n
But after an initial period of shock and denial following his diagnosis, Mr Jameson remembered what his consultant told him: \u201cHave a purpose and find a meaning in life.\u201d<\/p>\n
With \u201cso much life\u201d left in him, Mr Jameson therefore decided to create a bucket list.<\/p>\n
His son David said: \u201cWe all got together, cried, learned about the ramifications, what it was going to mean, but it didn\u2019t take long for us to all pull together.<\/p>\n
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open image in gallery<\/span><\/button><\/p>\n<\/div>Mr Jameson said his diagnosis has made him determined to encourage people not to see death as a taboo (Jack Boskett Media\/PA Real Life)<\/span><\/figcaption><\/figure>\n<\/div>\n\u201cWe had a few drinks, to say the least, we were dancing on the table and making promises to each other.<\/p>\n
\u201cI remember dad said he wanted this to be the start of his life, not the end of his life \u2013 and he really embodied and lived that.\u201d<\/p>\n
In 24 months, Mr Jameson said he ticked 50 achievements off the list, including playing the highest game of tennis on Mount Kilimanjaro, riding 110 miles in a day around Lake Geneva and trekking in Borneo.<\/p>\n
He travelled to Japan and Russia to watch England in the rugby and football world cups, and he climbed the Matterhorn and Mont Blanc, where he nearly had a fatal accident with fellow climbers, referred to as Mike and Jack.<\/p>\n
He writes: \u201cMike was in front, me in the middle and Jack at the back, all roped together.<\/p>\n
\u201cSuddenly, Mike lost his footing somehow. He fell backward and hurtled off the ridge down the steep snow-covered ravine bank, taking me with him.<\/p>\n
\u201cBefore I had time to think, I felt a sharp tug of the rope on my harness, then I was falling too.\u201d<\/p>\n
Thankfully, Jack helped to save the two \u2013 and despite the scary moment, Mr Jameson said he \u201cloved every minute of it, bar a second or two\u201d.<\/p>\n
Since his diagnosis, Mr Jameson has lost his ability to speak, along with the ability to walk and use his arms, but he receives \u201ca lot of support managing (his) symptoms\u201d and sees a personal trainer twice a week.<\/p>\n
His son David explained that his life \u201cchanged immeasurably\u201d as a result of his father\u2019s MND diagnosis and, with Mr Jameson facing the prospect of his own death, the duo started discussing his \u201clegacy and aura\u201d.<\/p>\n
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open image in gallery<\/span><\/button><\/p>\n<\/div>Mr Jameson and his son David have set up a company helping people have dignified deaths and funerals that adhere to their wishes (Collect\/PA Real Life)<\/span><\/figcaption><\/figure>\n<\/div>\n\u201cIn the weeks and months after my diagnosis, I thought about what I could do for my family as we learned to adapt our lives to MND and the future we had in store,\u201d Mr Jameson said.<\/p>\n
\u201cThe biggest thing was my funeral wishes.<\/p>\n
\u201cI want my life celebrated, not my death mourned. Beer, karaoke, music, and I want my ashes in a firework, to go out with a bang.\u201d<\/p>\n
Realising that many people avoid planning for end of life, the father and son founded Aura \u2013 a pioneering platform which provides direct cremations and funeral plans and supports individuals in making their final wishes known \u2013 in 2019.<\/p>\n
David explained that death touches every family, yet most people \u201cmeet it alone, confused and over-charged\u201d, and Aura was created to change that story.<\/p>\n
Mr Jameson said: \u201cAs my speech started to fail me, the most important thing for me was to be able to communicate with my family about what I wanted, and how much I wanted to save them from any unnecessary stress after I\u2019d died.<\/p>\n
\u201cThere was nothing out there that I could use, and that\u2019s where the idea for Aura was born.\u201d<\/p>\n
The father and son said they appreciate that talking about death is an \u201cawkward\u201d and uncomfortable topic, but they hope that by encouraging more open conversations, people will be able to process it \u201cmore healthily\u201d.<\/p>\n
Having now surpassed the eight-year mark since his diagnosis, Mr Jameson said he is still planning \u201chuge and bonkers\u201d challenges, and he is preparing to release his second book.<\/p>\n
In September, Mr Jameson is linking up with leading sled dog racer Vickie Pullin to try to break four wheelchair Guinness World Records at Dunsfold Aerodrome in aid of the MND Association.<\/p>\n
Although he faces many unknowns, Mr Jameson\u2019s mindset and words of advice remain positive and uplifting.<\/p>\n
He wrote: \u201cWhere there\u2019s life, there\u2019s hope.<\/p>\n
\u201cNever give up living \u2026 and keep smiling.\u201d<\/p>\n
To find out more about Paul\u2019s company, Aura, visit: aura.life.<\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"
Your support helps us to tell the story From reproductive rights to climate change to Big Tech, The Independent is on the ground when the story is developing. Whether it’s investigating the financials of Elon Musk’s pro-Trump PAC or producing our latest documentary, ‘The A Word’, which shines a light on the American women fighting for reproductive rights, we know how important it is to parse out the facts from the messaging. At such a critical moment in US history, we need reporters on the ground. Your donation allows us to keep sending journalists to speak to both sides of the story. The Independent is trusted by Americans across the entire political spectrum. And unlike many other quality news outlets, we choose not to lock Americans out of our reporting and analysis with paywalls. We believe quality journalism should be available to everyone, paid for by those who can afford it. Your support makes all the difference. Read more A father-of-three from Surrey, diagnosed with motor neurone disease (MND) and initially given as little as six months to live, is defying medical expectations eight years on. Paul Jameson, 65, is not only still “smiling” but is now determined to break the societal taboo surrounding death. The Godalming entrepreneur received the devastating diagnosis of Progressive Bulbar Palsy (PBP), a type of MND primarily affecting the face, throat, and tongue. Mr Jameson recalled that his “whole world fell in” upon hearing the news. His main symptom was initially slurred speech, which quickly led to a complete loss of his ability to speak. Due to muscle tightness, known as spasticity, in his legs and arms, Mr Jameson is no longer able to walk and now requires a wheelchair. At the time of his diagnosis in June 2017, Mr Jameson said he was given as little as six months to live and he decided to create a bucket list \u2013 he climbed Mont Blanc in the Alps and Mount Kilimanjaro in Africa and rode 110 miles in a day…<\/p>\n","protected":false},"author":1,"featured_media":3878,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[2],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.seekyourlove.com\/index.php?rest_route=\/wp\/v2\/posts\/3877"}],"collection":[{"href":"https:\/\/www.seekyourlove.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.seekyourlove.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.seekyourlove.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.seekyourlove.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=3877"}],"version-history":[{"count":0,"href":"https:\/\/www.seekyourlove.com\/index.php?rest_route=\/wp\/v2\/posts\/3877\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.seekyourlove.com\/index.php?rest_route=\/wp\/v2\/media\/3878"}],"wp:attachment":[{"href":"https:\/\/www.seekyourlove.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=3877"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.seekyourlove.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=3877"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.seekyourlove.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=3877"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}