What was your first Parkinson’s sign or symptom, and how did you respond to it?

[shellie]

It was a Saturday morning. I was still working then so was busy with housework when I started drooling…in the daytime, when I was wide awake. I froze and started thinking what causes that. Somewhere in the back of my mind was that little nugget of info- Parkinson’s. My reaction was a great, big “Oh crud!”

[Karla]

I was getting slower and slower walking and my balance was off. I have been a very fast walker and could no longer keep up the pace. I also was more tired.

[Marla Wise]

I was also a fast walker and I just felt something was different in my gait. Slower for sure and my left foot kind of dragged. Also,I didn’t swing my arms when I walked. When I think back, I was also very stiff. Had to stand a minute after sitting for a while before I could walk. Also had a slight tremor in my left hand. All those things put together made me see my doc…

[Ally]

Thanks for sharing, Marla. How long were these symptoms ongoing before you decided to ask a doctor about them? Was your diagnosis straightforward at that point?

[Meg]

Mine was small handwriting and harder to get up from a chair

[mhaig]

One mild December night in 2022 I decided to walk from my house to my childhood friend’s house; a walk that I have been doing for decades. I found it extremely hard to walk the short distance; I was experiencing shortness of breath, my gait was different, my back was stiff and I could not swing my left arm. I thought it was a one off and decided to ignore the inident and live with it. I also lived with the other symptoms of Parkinson’s Disease such as insomnia, dry eyes, ongong shortness of breath and a change in my handwriting.

As I had never been exposed to PD, I thought this was part of a normal aging process. After all, I was over 80 years old, therefore, I lived with the symptoms…Believe me life was extremely difficult during these two years. One day in August 2024 I was taken to emergency where I was diagnosed with pneumonia. This started a series of medical appointments including an appointment to a Neurologist who, after having thoroughly checked me, without any hesitation, diagnosed me as having PD.

[Ally]

Thank you for sharing, mhaig. Your story illustrates how challenging it can be sometimes to identify a serious health concern. How have things changed for you since your diagnosis?

[mhaig]

The confirmation of my diagnosis was a relief in spite of the bad news. I have been living a healthier life as I have been exercising regularly and following a healthier diet. My daily activities are planned around the times I take my meds. I have joined the Dancing with Parkinson’s daily online program, and I m making new friends through the singing with Parkinson’s group, and the newly diagnosed support group. I have also completed Speech therapy, LSVT BIG physiotherapy for six weeks, and I am about to start Rock Steady Boxing three times a week.

[Neil1]

Five years ago, I was biking in a public park when suddenly my left hand refused to grip the handlebar. I tried a variety of grips but my fingers pried themselves off with each one. I had no other symptoms, and my finger-gripping problem only occurred when I was on my bike, so when I went to the doctor a month later, Parkinson’s never entered my mind. Nevertheless, when my primary doctor administered several PD tests, I don’t recall being surprised. When a neurologist subsequently delivered the unequivocal diagnosis, I was only surprised that he didn’t say ”I’m sorry,” as in, “I’m sorry to have to tell you …” He just said, “You have Parkinson’s.” He said it flat-out, with a kind of macho air, as if he had the guts to deliver bad news to patients without the reticence and hesitation of doctors who let their feelings interfere with their clinical dispassion. I thanked him very much and never went back.

[Ted Wilton]

For quite some time my family marveled at stories about my dreams, but no one connected the to me having Parkinsons (our son is a critical care paramedic, and three of our four daughters are nurses). One day one of our daughters (she has Parkinsons and is not a nurse) observed me walking down the street, and I was not swinging my arms. At that time, I was also having difficulties sleeping and our daughter wondered if I had Parkinsons (my father also had it). My wife made a comment to our family doctor about my strange gait and my dreams, and he made a preliminary diagnosis. So, a daughter (not a nurse) who has Parkinsons, and a strange gait were the were the keys to my diagnosis.

Ted Wilton

[millcreek]

My husband’s first symptom was apathy but no one recognized it. He was treated for depression but his apathy increased. Our marriage suffered and I had no idea what was happening because his physical symptoms were so subtle. It took 8 years before he was finally diagnosed with PD. Few people realize that apathy can be a prodromol symptom of PD!

[Ally]

This is such a helpful reminder about the non-physical early signs of PD. Thank you for sharing your experience. Has your husband’s apathy improved at all? Has he shared anything with you about the psychological side of the PD experience?

[Brenda Reese]

My husband’s symptoms began with tiny, tiny hand writing and a masked face. For several years he was in denial that he was showing signs of PD. (His grandmother had had it ). His GP finally referred him to a neurologist who diagnosed him within 20 minutes with stage 3 PD. He was already exhibiting many symptoms of PD by then. Prescriptions of Carbodopa-levodopa (CL) helped rid him of several of his symptoms within a month or so. Nine years have passed and many of his earlier symptoms are returning in spite of is two CL prescriptions.

[Sussan Thomas]

Same here. My first sign was a subtle tremor in my right hand, especially when I was resting. I thought it was just stress or too much caffeine, so I ignored it for months. Then my handwriting started getting smaller and cramped, which felt odd. That’s what pushed me to see a neurologist.

[Sherman Paskett]

I didn’t realize it at the time, but my first indicator was dry eyes and constipation about 25 years ago. The first thing that led me to suspect I had a neurological problem, though, came 21 years ago when I had trouble driving screws with a screw gun. I kept it all to myself until the tremor showed up after a shoulder replacement. I went into surgery with no tremor, and woke up after surgery with a tremor.

I leaned much later that metal in the body is incompatible with PD and PD sometimes shows up after joint replacement. I still would have done the shoulder.

[Jangam Shekhar]

Great

[moochie]

I had total knee surgery on both of my legs, 8 months apart. It seemed like after that, my toes were curling, I had crawly sensations in my back, hot flashes, body stiffness, insomnia, and constantly feeling exhausted. I was diagnosed with Parkinson’s.

[Ally]

Thanks for sharing, Moochie. Did your doctor make any connection between the surgery and the onset of symptoms, or is it purely coincidental?

[Eve L Howard]

Yes, I’d like to know this too, had similar situation.

[pauleven]

I’m new here, but wanted to join in. My first sign was a small shake in my hand that wouldn’t stop when I was tired. At first, I just thought it was stress or maybe too much coffee. I didn’t think much of it until it started happening more often. I went to the doctor to check it out, and that’s when things started to make sense.

[Ally]

Thanks for sharing, Paul, and welcome to the community! After identifying the tremor as a PD symptom, did you suddenly realise other little signs and symptoms you had missed or dismissed before?

[Barry Block]

In August 2018, I woke up in middle of the night and went to the bathroom. on my way back to bed, I was dizzy and disoriented. My wife took my systolic blood pressure, which swung wildly between 100 and 200. She called 911. The first local hospital misdiagnosed me, but while in the second urban hospital, my son Googled all my symptoms which told him that I likely had PD. So this explained why I used to have nightmares and punch my wife, why I got dizzy when I stood up, and why I had trouble putting on a conventional watch.

[Eve L Howard]

At 54 I had partial knee surgery and then full knee surgery on other knee about 60, after that I couldn’t get back an easy gait, my balance was slightly off, and had a slight tremor in the left leg, along w/foot dykenesia (sp?). Diagnosed w/PD at 62. I backed of alcohol, amped up exercise, take supps, and Rasagiline + Amantadine (which is mildly helpful). All symptoms decreased and are very mild and have held steady for 5 yrs. I do think the knee surgery (anesthesia?) kicked up the low grade/mile PD (as well as 2 glasses of wine/day).