Early signs and symptoms of a young-onset Parkinson's disease patient – Michael’s journey to diagnosis and beyond

Welcome back to Parkinson’s Pharos! We often hear from our community about the challenge of recognizing Parkinson's disease in its earliest stages, as its symptoms can be mild and easily mistaken for other common conditions. Today, we share our story that truly unmasks early signs and highlights that living well with Parkinson's is possible! Remember that understanding the early signs can lead to timely diagnosis and effective management.

My husband Michael’s journey began almost a decade before his official diagnosis, a period often referred to as the prodromal phase. The prodromal phase is a period before the more classic movement-related symptoms (motor symptoms), like shaking (tremor), appear. Looking back, the signs were there, but like many, they did not seem to be related to Parkinson’s disease at the time.

The unfolding puzzle: Mild signals from the body

Less flexibility and frequent injuries

About 10 years ago, when Michael was 35 years old, an orthopedic doctor noted a surprising lack of body flexibility for his age. He told us that this was not common for someone who exercised frequently. Around the same time, Michael started noticing that his legs felt weaker, and had more frequent injuries after exercise. Yet, he always found that he felt much better after exercising. These signs, though not specific to Parkinson’s disease, can often be the early symptoms of ongoing changes in the body.

Strange dreams

I began to notice other changes while he slept. Michael experienced vivid dreams and we were laughing at those, as the scenario was like horror movies sometimes. I remember him saying that he saw a huge mosquito the size of a bird and he grabbed it from the nose just before biting him. More importantly, he was complaining of having restless sleep. Although he was sleeping throughout the night, he was still feeling tired during the day. Also, I noticed that during sleep he was making some repetitive leg movements, like cycling. It seems that these are classic signs of Rapid Eye Movement (REM) sleep behavior disorder (RBD) often called acting out dreams. This means one might talk, move, or even fall out of bed while dreaming. This a non-movement-related symptom (non-motor symptoms) that can appear years or even decades before a Parkinson’s diagnosis.

Lightheadedness

Michael was frequently feeling dizzy, unsteady on his feet, and complaining about weak feet or lightheadedness. We later got to know that all of these are common early symptoms of Parkinson’s disease.

Growing clues: When symptoms became more obvious

Calcific tendinitis

Around 5 years ago, Michael developed calcific tendinitis in his shoulder. Shoulder problems can be common in people with Parkinson’s, often due to stiffness or reduced movement. However, calcific tendinitis can also happen for unrelated reasons.

Minor shaking

Then, about 4 years ago, Michael noticed a new symptom: a shaking (tremor) in his left toe, which later appeared in his left thigh. This mild, localized tremor is often one of the first noticeable motor symptoms, usually beginning on one side of the body. An orthopedics doctor recommended to have an electromyogram (EMG) and magnetic resonance imaging (MRI) of the lower back to see if the tremor was due to a herniated disc at the lower back (Michael was suffering from back pain occasionally). The EMG came out normal, and the MRI showed that there was a herniated disc present on his left side, on the same side as the leg tremor. Therefore, the orthopedics doctor said that the tremor could be due to the herniated disc. The doctor also noticed that the left leg was weaker than the right, but was not concerned at the time. A herniated disc would not normally cause a rhythmic rest tremor, but it could cause muscle twitching or weakness.

This highlights the diagnostic challenges, as Parkinson's symptoms can mimic other conditions, leading to a wrong diagnosis at the early stages of the disease.

The turning point: Seeking specialized expertise

Bradykinesia and reduced arm swinging

Three years ago, Michael experienced a more noticeable minor movement change: he could not move his fingers in his left hand as quickly as his right. This slowness of movement, or bradykinesia, is a core motor symptom required for a Parkinson's diagnosis. Again, the orthopedics proposed to have an EMG of the hands this time. EMG came out normal, but this time, the neurologist who performed the EMG suggested seeing a movement disorder specialist. At the same time, I noticed his left arm was not always swinging naturally when he walked. This is called a loss of automatic movement often seen in early Parkinson's. Physiotherapy was helping strengthen his left leg and improve flexibility, but it had no effect on his finger movements or arm swinging.

The diagnosis

It was at this point that Michael consulted a movement disorder specialist, a neurologist with specialized training in Parkinson's disease. Just two years ago, at age 43, Michael received his diagnosis of Parkinson’s disease. This classifies him as a young-onset Parkinson’s disease (YOPD) patient, typically diagnosed before age 50.

The neurologist who diagnosed Michael told him “It is not luck that you have Parkinson’s, but it is not the worst thing you get either. You can expect to have at least 10-15 years of good quality of life.” The neurologist shared a hopeful view, saying that with medical advances, Parkinson’s might be curable within the next 30 years.

With these in mind, we left his office. The first month was not easy. We needed time, we needed to absorb the new information.

Living well: Adapting and thriving with Parkinson's

At the same time, the diagnosis came out as a relief for both Michael and me. It finally gave answers to our fears and concerns. We could both realize there was something going wrong, but we did not know what. Knowing what you have helps you understand what the next steps are, what you should expect, what can be improved and what you need to accept.

Today, Michael remains very functional. He has a very busy job with high responsibility. He is working out as much as possible. Exercise helps manage both movement and non-movement symptoms and may also have a role in slowing disease progression, according to research. We are enjoying life and trips.

Michael has chosen to only disclose his condition to our immediate family, three close friends, and the head of his company, a decision often made by YOPD patients who may face the stigma of a "senior's disease" at a younger age. Despite his diagnosis, we are thinking of expanding our family as we have a commitment to living a full and meaningful life. This outlook is supported by the fact that with expected advances in treatment, people with Parkinson’s will have an improved — or better yet, a good — quality of life in the near future.

Our story underscores that Parkinson's is a complex and highly individualized disease. There is currently no cure, and treatments mainly focus on symptom management rather than slowing or stopping the disease. However, a proactive approach, early diagnosis by a specialist, and consistent lifestyle management can significantly improve quality of life.

If you are concerned about possible Parkinson's symptoms, do not hesitate to consult your primary healthcare provider, who can then refer you to a movement disorder specialist.

Early identification of symptoms and proactive management are crucial steps on the journey to living well with Parkinson's.

Discover more about the early signs and symptoms of Parkinson’s in our article.