You will often hear that a person diagnosed with Parkinson’s disease (PD) first noticed something was “off” when a finger (or fingers) started twitching. This twitching of the finger is also known as a tremor, which is a characteristic motor symptom of Parkinsons.

Tremor is a rhythmic movement of a part of the body. A person may notice that a body part (like their finger) is tremoring and may refer to it as shaking, twitching, or quivering. When a person first notices this movement, it may occur only occasionally, or only when a limb or body part is in a particular position. It rarely is associated with discomfort or pain. For these reasons, the person may not seek medical attention for the tremor right away. 

On the other hand, the tremor may be a source of great worry for a person. He/she may assume that the tremor is due to Parkinson’s disease (PD), when in fact it has another cause.  

If you do notice a tremor, quiver, twitch or shake, the best next step is to get evaluated by a neurologist. 

It is important to note:

• Tremor is often the first symptom that brings a person to medical attention and may eventually lead to a diagnosis of PD
• Although about 25% of people with PD do not have tremor, about 75% of them do, so tremor is certainly a very visible and characteristic symptom of PD.
• However, there are many other medical conditions besides PD that cause tremor and a neurologist can distinguish between the possibilities.
• One of the most important features of a tremor is the position of the body part in which the tremor occurs: rest tremor (when the body part is at rest), postural tremor (when the body part is being held up against gravity), or action tremor (when the body part is moving). 
• Although there are many diseases that cause tremor in general, PD is one of the only ones that cause rest tremor. However, to the untrained eye, it can be difficult to accurately assess whether someone has a true rest tremor, which makes a neurologist’s evaluation necessary. 
• To meet criteria for a diagnosis of PD you need other symptoms besides rest tremor. However, because rest tremor is seen in virtually no other illness besides PD, if a neurologist sees rest tremor, even without any other symptoms, they will be concerned that PD is developing.
• Bottom line – if you notice a tremor, quiver, twitch or shake, it is wise to get checked out by a neurologist.

People with PD have shared their stories with us to help us understand how a tremor brought them to the diagnosis of PD. Their stories highlight that although the tremor may have been what brought them to medical attention, a neurologist’s exam noticed other symptoms that were present as well – slowness, stiffness, expressionless face or changes in walking. Their stories also highlight that with the correct medical attention and psycho-social support, people with PD can live life to the fullest. We know that hearing from people who have “been there” can be helpful, so we share their own words here with you.

Stories of finger twitching as the first noticed Parkinson’s symptom

Dave’s Story

Diagnosed with PD at age 46

I was 46 years old when I officially became a “Parkie”. My diagnosis of having Parkinson’s disease ended about a two month series of tests and exams to figure out what if anything was wrong with me that began with a visit to my family physician for a routine physical the previous January. I was a typical overweight and out of shape middle-aged man (I’m also bald – not that that has anything to do with anything, but you may as well get the complete picture now) and was motivated to make the appointment by fears of high cholesterol and heart disease and prostate problems. PD wasn’t even remotely on my mind at the time. Dr. G. was new, the latest in what had become a revolving door of physicians at the practice.

“I occasionally have an involuntary twitch with my index and middle finger on my left hand.”

He began the physical, talking to me and asking me questions the whole time. He asked me if I had any concerns about my health, and I told him I was worried about my cholesterol, and oh, by the way, I’ve noticed in the past three or four months I occasionally have an involuntary twitch with my index and middle finger on my left hand. He nodded, and said “Essential tremor, in all likelihood.” 

Afterwards, as I got dressed, the doctor said, “Has your wife said anything about you moving slowly? Or having a blank expression on your face?”

“No”, I said.

“It’s probably nothing”, he said. “It’s just that these things along with the tremor in your fingers are sometimes an indication of Parkinson’s disease.” He said it was likely nothing to worry about, but he wanted to make an appointment with me and my wife in a couple of weeks and get her perspective.

I left thinking less about the tremor and the Parkinson’s possibility than being relieved that I had survived the exam and wouldn’t have to go through that for at least another year. I mentioned the follow up appointment to Deb and we talked a bit about it but neither one of us was really concerned.

At some point in the next day or two, with the physical still on my mind, I performed a simple test: I rapidly drummed the three middle fingers on my right hand on the table where I was sitting, starting with my fourth finger, then my middle finger, then my index finger, just like, being the famous life-long fidgeter my mother used to complain I was, I had done thousands of times before. After doing this a few times, I tried to repeat the sequence with my left hand, and much to my surprise, I couldn’t do it – the three fingers weakly made contact with the table, and the fourth and middle finger were unable to move independently from each other, and the index finger spasmodically went up and down twice before the other two fingers were able to make contact once with the table. I showed this to my wife, and we agreed that maybe there’s something to this Parkinson’s stuff. Then came the first appointment with the neurologist, Dr. Bouyini, followed by the series of tests to rule out Multiple Sclerosis, Lou Gehrig’s disease, and even Lyme disease.

Deep Brain Stimulation, and looking back after seven years

Looking back, I know now that I had the disease at least two years prior to my diagnosis. My instance of PD is of the rigidity variety; although I occasionally have some tremors, they aren’t too pronounced, and my primary symptom during “off” periods is a rigor-mortis like stiffness that spreads through my body until my Stalevo (the form of levadopa/carbidopa I take) kicks in. In January 2010, I underwent Deep Brain Stimulation surgery, and it has helped prolong the “on” periods, the times when my medications work well to relieve my symptoms, and has helped me sleep much better at night. There have been some side effects to the surgery, impacting my speech and my handwriting, and I still experience periods of intense fatigue during the day, but overall I am doing much better since the surgery than I was before.

Sometime after being diagnosed, I started experiencing frequent and intense insomnia, awake for several hours during the night. Eventually, with nothing else to do, I started writing during these episodes, writing about what I was experiencing, what I had been dreaming about, whatever was on my mind, and now, all these years later, I haven’t quit. Writing has provided for me a tremendous outlet for dealing not just with my disease but also all the challenges and rewards that are a part of being middle aged. I have combined many of these writings into a book-length memoir and I am also working on a novel.

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Krystin’s Story

Diagnosed at age 35

Everything in my life was headed in the right direction. I was happily married with two daughters aged 5 and 2. I was working in Human Resources for a company that was lucrative enough to give me the professional opportunities I’d been looking for. At this time, we were also in escrow with the purchase of our first home. Minus the stress, life was pretty good.

I was 27 years old when I saw my left pinky twitch around for the first time. I was sitting at my desk looking at it as if it was its own being. I quickly attributed it to the stress I was under with buying the house. In conjunction with this, I was commuting a long way to work and raising two young children, so it wasn’t out of the question for someone in my position to be showing a bit of stress.

Fast-forward two years: Even though I had been laid off from my last job due to the slow economy, I was able to secure another position quickly and get back on track. I still had my marriage, my kids, my house, and my job — yet over the course of two years the pinky twitch had gradually progressed into a full-on tremor in my left arm. I was also beginning to experience severe bouts of depression and anxiety to the level of panic attacks. People noticed my tremor and often asked if I was cold or nervous. Neither was true and I had no idea why I was feeling the way I was, both mentally and physically. I began seeing doctors ranging from psychiatrists to neurologists. This was the beginning of my long journey to the truth.

Over the next few years, I was diagnosed with a pinched nerve, anxiety, and essential tremors to account for my shaking arm. I was put on a host of different medications to alleviate the problem, none of which worked. All the while, my tremors moved into the right side of my body and my anxiety and depression took center stage. I couldn’t figure out why I was so unhappy. It all became too much for our marriage to bear and my husband and I divorced.

A year later, after getting accustomed to being a single parent, I decided to pursue a multiple subject teaching credential. By this time, my symptoms had multiplied to include problems with balance that prevented me from getting dressed while standing up, trouble with odd activities such as beating eggs or cutting meat, and having difficulty writing and walking. Also, the tremors had progressed to my legs and neck and all of my muscles were in a constant state of contraction. My body was succumbing to an invisible terrorist and I was beginning to feel hopeless. I was uncomfortable and miserable. People asked questions. The doctors wouldn’t listen to me. I was getting worse and saw nothing but hopelessness in the future. Contemplating “what would it be like if I weren’t here” became commonplace thinking for me.

Luckily, I was surrounded by friends and family who kept me going. I obtained my teaching credential and began working as a 6th grade teacher. I continued seeing neurologists but also conducted research on my own. I was determined to put a name on whatever was slowly stealing my life from me. I couldn’t fight it if I didn’t know what I was up against. At one point I suggested to my neurologist that I could have MS or PD. He quickly dispelled my theories, stating that I had “no symptoms” of either of those diseases. After all, he was the Chief of Neurology, and he knew everything and I knew nothing. I had had enough of being disregarded. I was living in this body and as far as I was concerned, I was the expert and SOMEONE was going to listen to me.

I asked for a referral to a movement disorder specialist. He performed all of the motor tests that I had anticipated because I had been diligently doing my homework and knew what to expect when testing for PD. After walking up and down the hallway, writing a sentence and drawing a swirl on a piece of paper, and being poked and prodded a bit, I was handed the diagnosis of Young Onset Parkinson’s Disease. At 35 years old and after eight long years of misdiagnoses and useless drug treatments, I finally knew what I was contending with. Although the news was supposed to be shocking, it was surprisingly liberating. I felt that my intuition about what was happening to my body and mind were being validated after so many years of being rejected. I put up my dukes and prepared for the long fight ahead.

As much as I would love to not have PD, I cannot deny the wonderful people it has brought into my life and the awesome opportunities I have been afforded. As odd as this may sound, Parkinson’s has given me great purpose in life. I am participating in an effort to improve the quality of life for so many who suffer with this disease. I began serving as a Young Onset support group leader where I met both Parkinsonians and their caregivers who continue to inspire me with their experiences and insight, as well as their enduring strength to make the best of their lives and not let Parkinson’s Disease take over. Their strength is born of the absolute refusal to be weak and I am getting stronger and stronger every single day because of their bravery.

I have since remarried and inherited three stepsons. Every day is a blessing and I thank God for all I’ve been given, the good as well as the bad. After all, if we don’t see our way through the tough times, we won’t know how to truly appreciate the happy times.

I share my story because like others with PD, it is a valuable asset. Sometimes my inner strength begins to diminish and I just need to hear from others who may be having a tough day like me. It makes me feel better and replenishes the strength within me to keep moving when I am reminded that I am not alone in this. I hope my story does the same for anyone who reads it.

My outlook on life is this; every one of us is faced with personal struggles. The power to overcome these battles comes in many forms such as family, friends, education, faith, and hope. How we choose to utilize the resources available to us will be commensurate with our victory.

I’m thankful for my children who are my constant source of strength and reminders of who I’m really fighting this battle for, and my friends and family (old and new alike) who have been by my side since the beginning of this journey, are now, and who will be until the end.

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Elaine’s Story

Diagnosed at age 36

My journey began a number of years ago. Upon waking, I began having difficulty moving and the initial “getting going” was very troublesome. I saw my primary care physician (PCP) and he informed me that it looked like I had osteoarthritis; not an uncommon diagnosis for an almost middle-aged mother of three. I began taking an ibuprofen regimen.

As time passed, I saw my PCP several more times because the medication was not working. He referred me to a rheumatologist, in the belief that I still had arthritis because all other tests were normal. A week before I was to see the rheumatologist, a new symptom emerged that couldn’t be ignored. A tremor started on my left hand mainly affecting my thumb and index finger. I contacted my PCP and he assured me that everything was ok, but ordered a CT scan and MRI because of a family history of MS. All was normal and I saw the rheumatologist who reviewed my medical history and many test results. The doctor did not really know what to say. Here was a young woman with a tremor that moves like a snail sitting in front of him with perfect x-rays, blood tests, and imaging results. He sent me home with a “trial” diagnosis of fibromyalgia and a large bag full of pills that made me sick, including a harsh one for depression because I started crying in his office. This also rendered me with an emergency appointment to a psychiatrist. I even began to think I was completely crazy. I tried this for five months.

On September 24, I walked into my PCP’s office and told him, “I have had enough.” One look at me and he was on the phone with the Chief of Neurology, who brought his entire team down to see me. After viewing my vast medical history with my PCP and conducting an extensive neurological examination, the doctors agreed that I should be hospitalized for some trial medications that might work for me. I still did not have a diagnosis, but inside I felt this was the path I was looking for.

They only needed to try me on one medication. With the first dose of Carbidopa-Levodopa, I felt an improvement that I thought was completely impossible. I felt better and more in control than I had in over a year. With the second dose, I was walking and turning better. With the third dose, my tremor ceased completely for five hours. I was elated with these results. On September 25, my life changed when the neurological team came for their rounds and saw my improvement. I was suddenly numbed inside by the silence in the room and all 15 of them staring at me. The Chief of Neurology quietly sat by me and, with a concerned expression, told me that because I had such a dramatic response to the medication, it was confirmed that I have PD. I had only very briefly heard of this disease before. He told me that when he viewed me walking, my arm did not swing as it should, my gait on the left side was very different than my right, and I had more difficulty with my left hand and foot than my right. I showed positive signs of rigidity, decreased facial expression and bradykinesia; this could only be because of the lack of dopamine that is produced by my brain.

Through the wonderful education and suggestions from APDA, and better communication with my doctor, I found out that despite carbidopa/levodopa’s potential side effects, avoiding it, even when first diagnosed, isn’t always the best route for everyone. The side-effects don’t happen to everyone, and if they do, alterations can be made to the prescriptions. DBS surgery is also an option. I spoke with my neurologist about my quality of life and I was prescribed carbidopa/levodopa to help me function my best.

Tips and takeaways

• Tremor is often the first symptom that brings a person to medical attention and may eventually lead to a diagnosis of PD, so if you notice a tremor, quiver, twitch or shake, it is wise to get checked out by a neurologist.
• You are your best advocate. Be vocal about your concerns, be persistent, seek second opinions if you are not feeling heard.
• A neurologist will often notice other subtler motor symptoms present along with the tremor of PD, such as slowness of movement or masked face.
• There are other medical conditions besides PD that cause tremor and a neurologist can distinguish between the possibilities.
• PD is one of the only disorders that cause rest tremor. However, to the untrained eye, it can be difficult to accurately assess whether someone has a true rest tremor, which makes a neurologist’s evaluation necessary. 
• If you do receive a PD diagnosis, remember that APDA is here for you. Please reach out to us so we can help educate and support you and your loved ones.