I Got a Shock Diagnosis at 44. So I Asked Grammy Winners for Help

"You do know what's going on here, don't you?" my neurologist enquired, peering over the top of his notes.

"You've got Parkinson's."

I could feel all the air being sucked out of the room. Suddenly I was hovering between a life lived and a new life to be faced.

Samuel Smith
Samuel Smith, 46, lives in the U.K. He was diagnosed with Parkinson's disease at the age of 44. Courtesy of Samuel Smith

A few weeks later, I was sitting in my living room. I was perched over my guitar and in a tailspin. Playing should have been as easy as breathing; instead, I was paralyzed—unable to play a note.

The voice in my head screamed "play, play" but my hand wouldn't move.

Just 44, I was barely able to tap my right foot in time, complete basic tasks like whisking an egg or get consistent sleep due to increasing stiffness and pain in my shoulder.

There was no choice but to get on the right medication—five pills a day—and wait it out.

Over the course of the next few months, the feeling slowly but surely returned to my arm, and I started to play again.

I was euphoric, bouncing off the walls. I remember thinking: "I have no idea how long this will last, and I'm never taking this for granted again."

My wife, Nammi, would often head to bed, leaving me perched on the kitchen steps, writing and singing into the night.

Songs were pouring out, and they were the best I'd ever written. I couldn't play anything as fast or rhythmically as I used to, but it turned out that "different" was unlocking melodies and lyrics I'd never accessed before.

"You really need to make a record," became a familiar refrain from family and friends.

I'd been in duos and bands and made self-released albums all my life but—perhaps symbolically—this would be the first with just my name over the door.

I was in a scarily open-ended fight with my body and creativity felt like the only way for me to process it, escape from it, or to take it head-on.

I had so many questions spinning around my head—would I even be able to walk in a few years let alone play guitar or make a record? Was this the last thing I'd create and what legacy would it leave behind for my family and friends? The stakes felt so high.

With all that additional pressure, I knew I needed a safety net if I got to the studio, my symptoms spiked, and I couldn't play.

Samu
Samuel's album, in the Springtime is available in all digital music stores. Courtesy of Samuel Smith

My 22-year-old cousin Charlie, a fabulous young musician who I'd already earmarked to sing on several tracks, agreed to learn all my guitar parts just in case. "Let's make this album an absolute banger, mate!" he said.

With the wind in my sails, I also dug into my musical heartland—Nashville. The city is home to so many of my favorite bluegrass and acoustic artists. I made a list and reached out to all my heroes explaining my diagnosis and that this could be my last album.

The response took my breath away.

These were some of the world's best session players and musicians, with 27 Grammy Awards between them. Guitarist and banjo player Ron Block of Alison Krauss, pianist Matt Rollings of Lyle Lovett, fiddle legend Stuart Duncan and mandolin sensation Sierra Hull—they all said yes.

Rollings later told me there is a longstanding joke amongst session players in Nashville that you only "connect" with one in 40 records you play on.

 Stuart Duncan
Samuel's album featured musician Stuart Duncan Courtesy of Samuel Smith

"Yours was that record," he said.

This was to become a huge source of confidence and motivation.

Lastly, I needed a studio in the U.K. to record where I felt supported and safe. The name Sam Lakeman kept coming up. I wrote to Sam, an engineer and musician who works and tours with his wife Irish folk singer Cara Dillon but had little optimism that he'd respond to a cold call from an unsigned artist.

Even now, he chuckles and admits he "isn't quite sure" why he said yes before even hearing the new songs. What I felt though was an immediate bond and shared values which united our families and transcended the music.

Sam and Cara's involvement would come to define the creation of the album, and their Somerset home quickly became its heartbeat.

From the moment Charlie, double bassist Nick Pini, and I stepped into their kitchen, my anxieties melted away in a wave of laughter, tea, and biscuits. As Cara puts it, the connection quickly felt deep, this was "family." Nick said he felt there was "a magic happening."

Sierra Hull
Mandolin player Sierra Hull also featured on the album. Courtesy of Samuel Smith

Central to that "magic" was Charlie. I took huge comfort from his affable presence which meant that, in the end, he didn't need to parachute in and save me at all.

In fact, he was to leave an even deeper imprint on the album–whether it be recording stacks of soulful harmonies in the tracks Spark and Bitter End or soaring into the sky with his jazzy and yearning flute playing on the song On my Side.

The songs all grew in strength with this collective energy behind them. None more so than On My Side—written just months after my diagnosis and the only song on the record to directly address the topic.

This was hard ground to dig into but I left feeling energized and optimistic and by the time Sam sent the seven tracks over to Nashville for extra stardust to be added, all of us had forged lifelong bonds.

Those bonds now stretch right the way over the Atlantic to Nashville, from where a newly forged community of friends and musicians lifted every chorus, bridge, and middle eight to new heights.

Our ability to soar and to have an impact on those around us doesn't end with trauma or a diagnosis—quite the opposite. The act of being creative can reduce anxiety and depressive feelings and improve the function of our immune systems.

It allows us to make something beautiful, problem-solve, and refresh our bodies and minds.

True creativity is unlocking the force of the imagination and shaping something new in service of something greater than oneself.

Its healing potential, for those with Parkinson's and beyond, appears huge, but the academic research is scattered and, so far, there has been limited engagement from the creative industries. Let's start by empowering those who need it most.

For me, In the Springtime represents renewal, rebirth, and hope.

I could never in my wildest dreams have imagined this possible – and that's exactly the point. I don't know what the future holds—it is a sobering reality that I already can't play nearly half the songs on the album. However, my resolve is strong.

I won't accept that I've made my last record. I won't accept that this is an inexorable decline.

And that means I won't accept that life with this disease is little more than sitting on the beach and waiting for the wave to break over me.

Samuel Smith, 46, lives in the U.K. In the Springtime is available in all digital music stores. Proceeds will go to Parkinson's UK.

All views expressed in this article are the author's own.

Do you have a unique experience or personal story to share? Email the My Turn team at myturn@newsweek.com.

Uncommon Knowledge

Newsweek is committed to challenging conventional wisdom and finding connections in the search for common ground.

Newsweek is committed to challenging conventional wisdom and finding connections in the search for common ground.

About the writer

Samuel Smith

Samuel Smith is a musician from England.

To read how Newsweek uses AI as a newsroom tool, Click here.

Newsweek cover
  • Newsweek magazine delivered to your door
  • Newsweek Voices: Diverse audio opinions
  • Enjoy ad-free browsing on Newsweek.com
  • Comment on articles
  • Newsweek app updates on-the-go
Newsweek cover
  • Newsweek Voices: Diverse audio opinions
  • Enjoy ad-free browsing on Newsweek.com
  • Comment on articles
  • Newsweek app updates on-the-go