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.

Profile picture for amymoss93 @amymoss93

@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.

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@amymoss93 perhaps you should look into cognitive behavior therapy for sleep. I am going to start this week with a group online sponsored by Mass General Hospital in Boston.

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A pretty good indicator is loss of sense of smell. The only symptoms I really had were REM sleep, loss of smell, and something that has gotten much more intense noww that I have been diagnossed with "idiopathic PD" - Which means there are few strong indicators of PD (No tremors but there are enough other signs that suggest that the patient DOES have PD

PT HAS THESE SYMPTOMS THAT SUGGEST PD OR CONSISTENT WITH, PD
'
t has these Symptoms that suggest PD
REM Sleep Disorder
Lack of sense of smell
Strong response to L-dopaExaggerated startle respoinse

Excessive Startrle response (much like babies have when their entire body responds to a loud or frequent sound unexpedted sound
exaggerated response *full body response" to any unexpected sound
PT gets 'lost' in tasks that require lots of attention (takes 3 hours to fill pill boxes

PT doesn't have these symptoms that you would expect to see in a PT with PD
Tremors

AMBIGUOUS SYMPTOMS
Frequest Falls (only falls once a year)
Can get disoriented in space and time
Double vision. If patient has a wandering eye as a child, he may have it return once he develops PS. Because , at birth, the brrain coiuldn't control the teye muscles to both focus on the same thing
Older -brain has to work harder to retain single vision.Muscles need l-dopa to send the bfain's orders for the eyes to work together.

Other Symptoms you would expect a person with PS to display that this patient doesn't have
REM Sleep Disorder
Loss of sense of Smell

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Instead of every one using pt,ps,pd and so on can you please replace abbreviations with words for people like me who don’t understand their abreviations

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Pain in left anterior hip and unable to raise that knee very high. Tremor left leg, and foot cramp causing toes to curl under. I assumed it was all due to a dodgy hip replacement but it all resolved, more or less, on CL.

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Profile picture for louismines @louismines

Instead of every one using pt,ps,pd and so on can you please replace abbreviations with words for people like me who don’t understand their abreviations

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Hi @louismines

You are asking a good question. We do tend to use acronyms without explaining the meaning. I will try to help:
PT usually refers to physical therapy.
PD usually refers to Parkinson's Disease.
I am not certain about PS. Perhaps one of our other members can assist with that.

You make a good point. In the future, when we use an acronym or abbreviation, let's try to include the meaning on first use. If you are reading a post and don't understand the abbreviation, just hit the "Reply" button under the post and ask what it means.

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