Like Michael J Fox, I was diagnosed with Parkinson’s disease in my 30s, but doctors thought it was a coffee addiction

Young patients with debilitating Parkinson’s disease are showing surprising symptoms of the world’s fastest growing neurological disorder.

Parkinson’s disease is a degenerative neurological disorder that has long been considered a “disease of the elderly” because it is typically diagnosed in patients over the age of 60.

However, in as many as one in five cases, adults under the age of 50 suffer from tremors, balance problems and stiff muscles.

One of the most famous examples is actor Michael J Fox, who was diagnosed with the condition at the age of 29. He kept his struggle hidden from the public for seven years.

Now, following Fox’s (62) stunning performance with Coldplay’s Chris Martin at the Glastonbury Festival in England last weekend, other patients with young-onset Parkinson’s disease have shared their stories of their own struggles.

Amber Hesford from Texas thought her shaking hands were from drinking too much coffee.

But after her father urged her to see a doctor, the doctor “immediately said something was wrong,” she shared in a TikTok post video.

Mrs. Hesford, now 41, was referred to several neurologists, who mistook the shaking for stress, especially since Mrs. Hesford was newly divorced and raising two young children.

It would be years before she was finally diagnosed with early-onset Parkinson’s disease in 2018, at the age of 35.

Parkinson’s disease is a progressive neurological disorder that leads to the destruction and death of nerve cells that produce dopamine, a neurotransmitter that regulates body movements.

Without dopamine, patients experience balance problems, tremors throughout the body, stiff limbs and slow movements.

According to the Parkinson’s Foundation, about 90,000 Americans are diagnosed with Parkinson’s disease each year, and 10 to 20 percent of them are under age 50.

Experts still don’t know what causes Parkinson’s disease, but there are indications that genetic and environmental factors, such as exposure to harsh chemicals and pesticides, may be the culprits.

According to the Michael J Fox Foundation, in younger patients a family history of the disease may play a role.

Ms Hesford is still able to work full-time and raise her now teenage sons. In 2021, she underwent deep brain stimulation (DBS), an operation in which doctors implant a pacemaker-like device in the brain to correct disrupted electrical signals.

Parkinson’s disease itself is not a fatal disease, but it can put a significant strain on the body and lead to complications such as swallowing problems, cognitive decline and infections.

Mike Michaud of Connecticut was only 42 years old in 2018 when he was diagnosed with young-onset Parkinson’s disease.

Months earlier, Mr. Michaud had noticed stiffness and rigidity in his right arm and hand. The software engineer also had difficulty typing, a crucial part of his job.

Initially, doctors attributed the symptoms to a nerve problem or carpal tunnel syndrome, a condition caused by a pinched nerve in the wrist.

However, a neurologist suspected Parkinson’s. “She told me she was going to prescribe me medication, and if it helped me, there was a good chance I did indeed have Parkinson’s,” Michaud, now 48, said in a TikTok post. video.

The drugs, Carbidopa and Levodopa, relieved his symptoms. “I remember going back to work and being completely shattered,” he said.

‘I remember calling my wife from the car in the parking lot, crying, wondering what the future held for me.’

The diagnosis was confirmed with a DaTscan, in which doctors inject a radioactive tracer into the blood to measure dopamine signals.

According to the American Parkinson Disease Association (APDA), people with Parkinson’s disease typically have smaller signals in a part of the brain called the striatum, where the endings of dopamine neurons are supposed to be.

“For the first few years, my Parkinson’s was just an inconvenience,” Mr. Michaud said. “As long as I took my medication on time, I was able to live my life fairly normally.”

However, over the last few years, Mr Michaud’s condition has deteriorated and his medication has become less effective. Earlier this year, he underwent DBS.

When Barbara was 40, she noticed her right leg was shaking. “I thought it was really weird,” Barbara, now in her late 60s, said in a TikTok post. video.

Shortly after, she began having trouble sleeping and restless legs, but doctors assured her that these symptoms were nothing to worry about.

Four years later, Barbara’s handwriting began to shrink and become illegible. When the doctor referred her to a neurologist, he said, “You’re way too young to have Parkinson’s.”

In April 2000, at the age of 44, Barbara was diagnosed with Parkinson’s disease.

‘That day everything changed for me. Life as I knew it changed completely. All the things I dreamed of and built for seemed totally out of reach.’

A TikTok user who goes by TheKiltedDad also shared that he was diagnosed with Parkinson’s disease at a young age earlier this year.

“I said, ‘Man, I’m having such a hard time sleeping,’ and my wife said, ‘It’s not just hard to sleep. He’s screaming in his sleep, he’s kicking in his sleep, he’s hitting in his sleep, he’s jumping out of bed,'” he shared on TikTok.

TheKiltedDad is on medication and was able to dance with his daughter at her recent wedding. He is now focused on raising awareness as he deals with the new diagnosis.

“If you have a loved one who is screaming, yelling, or kicking in their sleep, or who is clearly not resting, or who is talking a lot, make sure you tell your doctor because it could be a sign of something else,” he said.