Extraordinary People

Son imagined sick dad swimming beside him during gruelling training to motivate him ahead of marathon

Raising awareness for Progressive Supranuclear Palsy [PSP]

A man who embarked on an incredible mission to raise awareness for the rare illness that his father has, imagined his dad swimming beside him during gruelling training sessions to stay motivated.

Sam Blanchard’s dad was diagnosed with Progressive Supranuclear Palsy [PSP] in 2017, a rare neural disease that falls under the Parkinson’s umbrella.

Yet where Parkinson’s is caused by damage to a specific area of the brain (the basal ganglia), PSP affects the entire brain. This results in a very aggressive deterioration and affects balance, mobility, speech, sight, memory, swallowing… everything.

As Sam was forced to witness the impact that the savage illness took on his dad, Mark Blanchard, he was determined to do all in his power to fundraise for PSP.

Not doing things by halves, he chose to undertake an extraordinary marathon that would see him swim 13km, cycle 100km, and run 42km in one day across the Isle of Wight off the south coast of England.

Speaking exclusively to Uspire, Sam told us about his impressive pursuit and just how he managed to push through the mental as well as the physical boundaries.

Sam explained: “The inspiration for the challenge came from my dad. From an early age, he inspired me to be active and would often take me to the gym with him.

“I remember being a young boy and thinking my dad was invincible and he could do the impossible. He would go out for hours cycling or swimming. But he was always competitive, and I never actually competed in anything.

“When we learned about his diagnosis, I knew I wanted to do something that would make him proud but also wanted to do something that made people stop and think. I wanted to do something that I thought was impossible.”

And impossible it was, to begin with, as Sam faced a series of hurdles.

Originally, the challenge had been set to be completed over three days; with the swim around the island, the cycle, then the run.

This initial plan included a swim of 96km, a feat only accomplished by five people before, experienced endurance swimmers, who took over 24 hours to complete it.

However, when training began in September 2019, Sam was new to swimming and struggled to hit a distance of even 1.5km.

Sam said: “Last winter, I went through some extreme highs and lows, more lows if I am honest. The training was six days a week, sometimes two to three sessions a day. This was on top of a full-time job of around 40-50 hours a week.

“I relied heavily on my colleagues and because they knew the background to what I was doing, they were letting me arrive late or leave early in order to fit in training.

“It took over my life; I was having to work on what I was eating, often not eating enough due to work, I was always tired, needing to get eight or nine hours sleep a night but often having to train at 5am or late in the evening just to make sure I got the sessions in.”

He continued: “When the running and cycling increased, I began to find it difficult to stand up if I had been sat down for too long, going up and down stairs was a chore, having to go one step at a time and pause due to pain in my knees or calves.

“I can’t say for sure, but I am confident I had a stress fracture in my shin, it meant I had to rearrange my weeks to ensure long enough recovery between my runs.”

Despite immense strain on the body and the mind, Sam hit a turning point in March 2020 when he began breaking through barriers in training to gain momentum.

He had built up his capabilities to achieve four-hour swims and was just a week away from flying to Mallorca to undertake a one-on-one endurance swimming camp with Anna Wardley, who had successfully swum around the Isle of Wight herself seven years earlier.

But then, COVID-19 happened.

Sam lost access to the gym, swimming pools closed, and he had to cancel his trip.

[Credit: Patrick Condy]

He said: “It was a real low. I lost a lot of momentum and direction over the next few weeks. My dad was shielded so I couldn’t even draw on him for motivation. I felt lost, I thought I had let a lot of people down and I was embarrassed.

“At other times through my training, I was able to draw on my dad and his illness. I would often imagine him swimming next to me, not the dad I know now but the invincible dad I knew as a boy. Obviously, that dad never got tired so when I was slowing down, I would imagine my dad speeding away from me and I had to catch him up.

“Of course, this was a solo event, which meant hours and hours of training on my own. My coaches were now remote, and I was just going up and down in a pool for hours. So often, my mind would wander and could go to quite dark places.

“There was rarely a training session I didn’t break down. In the pool if your eyes are red, it’s assumed it’s because of the chlorine. But in the gym, it could be embarrassing.”

While Sam’s journey was exhausting and demanding, his dad remained the focus so that he could reach his goals personally while also for his family and the charity.

In particular, Sam wanted to finish the quest in honour of his dad’s own sporting abilities.

He said: “Prior to my dad’s diagnosis, he was strong and active. The chairman of a road cycling club on the Isle of Wight, brown belt in karate, frequent gym goer and weight lifter.

“One characteristic that also stands out for me was the pride he took in his personal appearance, always dressing sharply and being clean shaven, eating well and putting his training ahead of any social distractions.”

It was only when Mark went to visit his son in America in 2015, that Sam really noticed a difference from the dad he had grown up with.

Sam continued: “I walked past him at the airport as I didn’t recognise him. He was small, almost frail looking, unshaven and dressed in tattered clothes.

“He had made a series of seemingly random life decisions in the months leading up to this trip, including job changes, relocation, uncharacteristically spiritual decisions.

“After collecting him from the airport and watching him struggle to climb into and out of my car, falling in the corridor of my home, I worried he might be heavily drunk.”

Sam monitored his dad during the visit, watching as he continuously lost balance, acted increasingly childlike with a bizarre new laugh, although surprisingly, barely touching a drop of drink. He even contacted family to ask if dad was having a breakdown.

However, during a hike along one of the stunning gorges in Western New York, Sam began to put the pieces together and think perhaps this was something neurological.

[Credit: Patrick Condy]

He said: “After witnessing him fall spontaneously backwards, luckily landing on his backpack and avoiding a certain fall to his death, I questioned him how he was feeling.

“He tried blaming his balance on an old ACL injury [Anterior Cruciate Ligament] in his knee that he sustained skiing, I think forgetting that I work in professional sport as a physiotherapist and knowing full well this was not a weakness in his knee.

“At this stage, I started to worry big time about the prospect of something neurological or worse, something like a tumour.

“Over the years, dad finally got a diagnosis of Progressive Supranuclear Palsy [PSP], since then we have learned about the disease as we go and witnessed its rapid progression.”

Driven by sheer determination and grit, Sam set about his crusade in August of this year.

And despite the many obstacles during training, the day itself was extremely positive.

Sam told us: “Everyone around me was buoyant and laughing all day, when I was struggling with sea sickness during the swim, my friend Scott Dawson (another successful swimmer around the Island) was there to pick me up and keep me focused.

“I could not have done the event without the support crew behind me.”

And, of course, his number one supporter was also there ­– dad.

Sam said: “He was laughing! He has developed this wicked laugh as part of his condition, which has everyone else laughing. It is completely uninhibited.

“Dad had insisted that he stayed for the whole event, which was 15 hours in the end. He was there when I got out of the water at Cowes and was in great spirits. Little did I know however he was then taken to A&E due to a complication of his illness.

“In hospital, he was telling the staff about my challenge and that he needed to get out. Luckily, he was there at the finish line and had a Guinness in hand to give me.

“My uncle gave him a lift home, around 10pm, a really long day for my dad, and he said he laughed the entire way home.”

[Credit: Patrick Condy]

Not only this, but Mark defied all expectations by standing from his wheelchair to wave his son off before the bike ride, a truly miracle moment for anyone immobilised by PSP.

Sam’s miraculous work continued as he raised a staggering £10,400, with donations split across the PSPA, the Earl Mountbatten Hospice and Surfers Against Sewage.

Speaking about how he would like to see education change around his father’s illness, Sam believes that research and understanding is crucial.

He said: “The biggest impact the PSPA has had on my family is providing support groups. On behalf of my nan and grandad, I want to thank them for these groups. They have met fellow families and they are learning together, as they go. It has been invaluable.

“I would like to help people understand more about the progression of the disease, as it is so multifactorial. I hope now that more people around my home on the island know about this, as I know a lot of people that knew my dad assumed he had a breakdown or that he was drunk. People I had grown up with, worked with, drank with, would look at me in disgust when my dad fell for no reason. I want them to understand.  

“The problem with rare conditions is that they are exactly that, rare. They have limited numbers of people with the condition at any one time… so, what is the incentive for drug companies to fund research into rare conditions if not many people are going to need the medications? That is why these charities are so vital.”

While estimates vary, it is believed around 3 in 100,000 have PSP.

If you or a loved one has any of the following symptoms, ask your GP for a neurologist referral: dizziness, unexplained falls typically backwards, loss of balance, muscle stiffness, dislike of bright light (photophobia), difficulty controlling eye movement.

For more information, click here: PSPA

To donate to Sam’s mission, click here: TRIsleOfWight

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