Looking Back - What Were Your Early Warning Signs of Parkinson's?

Posted by Singularity @azsingularity, May 8, 2025

I'm 51 and do not (currently) have Parkinson's. However, I've been deemed to be "at high risk of developing PD" due to having something called REM Sleep Behavior disorder (RBD), which I was diagnosed with 2 years ago (after suffering from it for 5 years prior).

I did see a neurologist at Mayo after the RBD diagnosis, who ran me through the battery of PD tests, but she said I wasn't showing any detectable signs of it.

She tried to set my mind at ease by saying there IS a (small) chance I'll never actually develop PD. Yay for that, I guess.

For those of you who have Parkinson's, I'm curious:

Looking back over your "healthy years," knowing what you know now, were there any very early (pre-diagnosis) warning signs that you didn't recognize at the time? Anything you ignored or just wrote-off as "normal"?

What I'm getting at here is: short of the obvious symptoms (tremors, walking issues, etc), is there anything subtle I should be on the lookout for... so I know when to reach out to a neurologist again?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

kimmarla | @kimmarla | Sep 25, 2025

I'm 65 and was just diagnosed with PD the end of this past April.

It was hand tremors and severe fatigue that got me into the neurologist. Prior to that, I had a fall for no good reason, vision problems, and loss of memory and creativity.

Parkinson's Voice Project has a fantastic introductory video (and a great speech therapy program!)
https://parkinsonvoiceproject.org/

Lisa Lucier, Moderator | @lisalucier | Mar 18 9:48am

In reply to @kfritz0627 "Yes, my neurologist said it’s likely PD and prescribed the l-dopa replacing medication to see if..." + (show)

@kfritz0627 - how is your tremor?

kfritz0627 | @kfritz0627 | Mar 18 10:26am

In reply to @lisalucier "@kfritz0627 - how is your tremor?" + (show)

@lisalucier my neurologist, ramped me up to three pills, three times a day of the levodopa. I think it has reduced my tremors. They’re not completely gone, but they’re much better than they were.

Lisa Lucier, Moderator | @lisalucier | Mar 18 11:38am

In reply to @kfritz0627 "@lisalucier my neurologist, ramped me up to three pills, three times a day of the levodopa...." + (show)

@kfritz0627 - glad to hear the tremors are reduced. Do you have a future appointment with your neurologist to assess the efficacy of the levodopa for your symptoms and your diagnosis?

bnewt12 | @bnewt12 | Mar 19 7:23am

In reply to @kimmarla "I'm 65 and was just diagnosed with PD the end of this past April. It was..." + (show)

@kimmarla
Hello I’m 65 and was also diagnosed last April with pd - it was the hand tremors that caused me to go to the doctor- we have lots in common- wish you the best

goatgirl28 | @goatgirl28 | Mar 27 11:00am

I've had anxiety and depression most of my life. In 2007, I lost my sense of smell. Never knew these were PD-related. In Oct of 2017 I was having lunch when my legs began to tremble badly. It only lasted for a few minutes but I was motivated to find a doctor. Took me 'til Dec 2023. While I searched, I developed what I call bobblehead and my handwriting became small. Good luck.

bmfoster | @bmfoster | Mar 28 8:13am

In reply to @kimmarla "I'm 65 and was just diagnosed with PD the end of this past April. It was..." + (show)

@kimmarla
The Voice Project video was so helpful. I heard my voice in the video and it confirmed my concerns about it being related to my neurodegenerative disease. Thanks for sharing this information.

gardeningjunkie | @gardeningjunkie | Mar 28 6:36pm

A few years before my brother was diagnosed with PK at age 68 I didn’t understand his personality change. He had no tremors or physical signs.
He was always so full of energy- loved to fish, hunt, shoot and off road. When he’d visit my husband and myself we’d go out rock collecting, exploring on our side by side off road vehicles, fish and he loved target shooting. He stopped driving the 6 hr drive alone and his grown kids would drive up to stay with us and he was happy to simply sit in a chair and just hold a baby. This was nothing like my sweet, high energy brother. He was still sweet, but no longer the spark plug who’d get us all outside doing something physical.

amymoss93 | @amymoss93 | Mar 29 10:49am

In reply to @jatonlouise "It took me 3 years to get a diagnosis. The onky symptom I had was incrrasingly..." + (show)

@jatonlouise

It took me 3 years to get a diagnosis. The onky symptom I had was incrrasingly severe fatigue. I have never been a graceful person- bumping into things, etc Didn't have very good hand-eye coordination. I started my annual falls in my early 50s. ( I am now 80; was 79 when diagnosed). The worst fall I had was one day lwhen I was walking home from taking myngrandson to school. I was feeling OK. But I took a bad fall. I did not even realize I was falling until my face was inches from hitting the sidewalk at full speed, so I didn't put my hands up to break my fall and I fell flat on my face. Fortunaely, i didn't knock any teeth out and, although my glasses went flying through the air they didn't break. But my nose was smashed flat. I was in the hospital for a week, while they ran all sorts of tests - heart and neurological tests and found nothing to account for the fall. The did a good job of fixing my nose but the didcouraged me from looking at it before it was repaired. Apparently i would ha cvefrightened small children .I continued to have 1 bad fall every year until I was diagnosed and started L- dopa. I was diahnosed in October 2023 and I havn't resumed my annual "fall" ritual. I also apparently have had REM sleep disorder since I was in my early twenties. They have been a constant source of amusement in our family. Like the time I bolted up right in the middle of the night, pulled my husband's pillow out from under his head, threw it across the bedroom, and laid back down to sleep. l never knew that this was abnormal until I was introduced to Mr. Parkinson and his nasty bag of tricks. My poor husband has hsd somr close calls. One night zi dreamed a man was tdyong to steal my baby. In real life, as he always dies, he tried to wake me
up and grabbed my arm. I,, if course, thought it was the man whibwad trying to take my baby, and i trird very hard to bite his hand. Fortunatele he was abke to wake md up before i harmed him.
There was one otger thing tgat
In retrospect could hawmce indicated PD. By the time I was 40, I probablystarted losing my sense of smell. The day after ee had moved into a new house, my husband smelled something burning. A lamp had fallrn over onto a rug and the rig eas in fire. My hudbsnd followed his nise ti the firr and put it out. I never smelled it. We just thought like my sense of direction (which is NONE( I had no sense of smell and I undiubtedky owe many of my work colkeagyes apologies fir ocer-doing it with perfume..

So falls, REMZ, abd no sense of smell prrceded my diagnosis by at least 40 years

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@jatonlouise I have been having REM sleep issues for several years; I actually DID bite my husband one night. My sense of smell has been messed up for ten years. I can smell some things, faintly, but not much. I do, however, often smell things that are not there. I have not been diagnosed with Parkinson’s. I have had sleep studies done but they have not seen my crazy dream acting out. Is there anything at all that can be done at this point (asking not as medical advice, just your experience). I don’t sleep well, whether it’s an acting out night or not. I am ridiculously tired ALL THE TIME. Something has to give; there has to be more to life than pure exhaustion all the time. I feel like doctors are listening, but I don’t think they are understanding just how heavily this impacts my daily life.