Young patients with debilitating Parkinson’s disease have revealed their startling symptoms of the world’s fastest-growing neurological disorder.
Parkinson’s disease, a degenerative neurological condition, has long been thought to be an “old person’s disease” as it is typically diagnosed in patients over the age of 60.
However, in one in five cases, adults under 50 years of age suffer from tremors, balance problems and muscle stiffness.
One of the most famous examples is actor Michael J. Fox, who was diagnosed with the disease when he was just 29 years old and hid the battle from the public for seven years.
Now, after 62-year-old Fox’s electric performance with Coldplay’s Chris Martin at the Glastonbury Festival in England this weekend, other patients with early-onset Parkinson’s disease have shed light on their own battles.
Michael J. Fox, 62, wowed audiences when he performed with Coldplay’s Chris Martin at the Glastonbury Festival last weekend.
Fox was diagnosed with Parkinson’s disease at age 29 and has long been the face of the early-onset form of the disease.
Amber Hesford from Texas thought her shaking hands were simply due to drinking too much coffee.
However, after her father urged her to see a doctor, the doctor “immediately said there was something wrong,” she shared in a TikTok. video.
Ms. Hesford, now 41, was referred to several neurologists, who mistook the tremor for stress, especially since Ms. Hesford was recently divorced and raising two young children.
It would be several years before he was finally diagnosed with early-onset Parkinson’s disease at age 35 in 2018.
Parkinson’s disease is a progressive neurological disorder that causes the deterioration and death of nerve cells that produce dopamine, a neurotransmitter that regulates body movements.
Without dopamine, patients have balance problems, whole-body tremors, stiff limbs, and slow movements.
According to the Parkinson’s Foundation, approximately 90,000 Americans are diagnosed with Parkinson’s disease each year, and 10 to 20 percent are under age 50.
Experts are still not sure what causes Parkinson’s disease, although evidence suggests that genetic factors and environmental triggers, such as exposure to harsh chemicals and pesticides, could be to blame.
In younger patients, family history of the disease may play a role, according to the Michael J. Fox Foundation.
Ms Hesford is still able to work full time and raise her children, who are now teenagers. In 2021, she underwent deep brain stimulation (DBS), a surgery in which doctors implant a pacemaker-like device in the brain to correct altered electrical signals.
Amber Hesford from Texas was diagnosed with Parkinson’s in 2018 at age 35. She initially mistook her tremors for a side effect of drinking too much coffee.
The mother of two underwent deep brain stimulation in 2021 and is now focusing on raising awareness on social media.
Parkinson’s itself is not a fatal disease, although it can put the body under significant stress and lead to complications such as difficulty swallowing, cognitive impairment, and infections.
Mike Michaud from Connecticut was just 42 in 2018 when he was diagnosed with early-onset Parkinson’s disease.
Months earlier, Michaud had noticed stiffness in his right arm and hand. The software engineer also had trouble typing, a fundamental part of his job.
Doctors initially attributed the symptoms to a nerve problem or carpal tunnel syndrome, a discomfort caused by a pinched nerve in the wrist.
However, a neurologist suspected Parkinson’s. “He told me that he was going to prescribe me medication and that if they helped me, it was likely that I would have Parkinson’s,” Michaud, now 48, said in a TikTok. video.
The drugs, Carbidopa and Levodopa, relieved his symptoms. “I remember going back to work and being completely devastated,” he said.
“I remember calling my wife from the car in the parking lot crying, wondering what the future held for me at that moment.”
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’s Disease Association (APDA), Parkinson’s patients often have smaller signals in a part of the brain called the striatum, where the ends of dopamine neurons are thought to be.
“For the first few years, my Parkinson’s was just an inconvenience,” Mr. Michaud said. “As long as I took my medications on time, I could live my life pretty normally.”
However, in recent years, Mr. Michaud’s condition has worsened and his medication has become less effective. Earlier this year, he underwent a DBS.
Mike Michaud of Connecticut was just 42 years old in 2018 when he was diagnosed with early-onset Parkinson’s disease. Months earlier, Mr. Michaud had noticed stiffness in his right arm and hand.
Barbara, who is now in her 60s, was diagnosed with Parkinson’s 24 years ago. Doctors initially told her she was “too young”.
When Barbara was 40 years old, she noticed tremors in her right leg. “I thought it was very strange,” Barbara, now in her 60s, said in a TikTok. video.
Shortly after, she developed trouble sleeping and restless legs. However, 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, she told him, “You’re too young to have Parkinson’s disease.”
In April 2000, at the age of 44, Barbara was diagnosed with Parkinson’s.
“That day changed everything for me. Life as I knew it changed completely. All the things I had dreamed of and worked for seemed totally unattainable.”
A TikTok user who goes by the name TheKiltedDad also shared that he was diagnosed with early-onset Parkinson’s disease earlier this year.
“I mentioned, ‘Man, I have a hard time sleeping,’ and my wife mentioned, ‘It’s not just that I have a hard time sleeping. 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 focusing on raising awareness as he copes with his new diagnosis.
“If you have a loved one and they’re screaming, screaming, kicking in their sleep, obviously not resting, talking a lot, make sure you mention it to your doctors because it could be a sign of something else,” he said.