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Looking Back - What Were Your Early Warning Signs of Parkinson's?
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?
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@janet42,
It is always to keep in touch with your doctor when you are beginning a new medication. If my understanding is correct, you are now taking 9 tablets a day. Is this correct?
You say that there has been no improvement with mobility. Could you describe what type of mobility problems you are still experiencing?
If this were my situation, I would call my doctor's office and explain the continuing mobility issues. Will you post again with any updates?
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1 ReactionSorry for the confusion; I am taking 3 tablets per day.
My symptoms started 2 years ago but primary doc didn’t pick up on them.
I thought the mobility issue was due to nerve damage from a hip replacement. I have trouble walking. Some days with a cane, some days just clinging to walls! Freezing in doorways etc!
I use a walker when I’m out and about. This started in January 2025.
I will call my neurologist on Tuesday to find out if I need to increase dosage.
Thank you for your response 😊
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2 Reactions@janet42
I look forward to hearing from you after you talk with the doctor. I hope that you get some help. Mobility issues are tough to deal with. I tend to fear falling when I'm having a awkward day of walking.
Have you had PT specifically for Parkinson's? If not, you might consider asking for a referral, as exercise combined with medication will give you the best results.
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2 ReactionsWell, what prompted me to tell my doctor was the increase in frequency and severity of my "episodes" (yelling, punching, kicking, etc).
The first time I ever jumped completely out of bed (to a standing position, fully away by that point), I thought "huh, that was odd." But, I didn't think it meant anything was seriously wrong. Figured I was just a restless sleeper. In those days, I was only gently punching, kicking, or vocalizing 1 night every couple months, so it didn't strike me as odd at all.
Fast forward a few years and the episodes had increased in frequency to 15+ nights per month (I started keeping a journal). The severity had increased too, with me shouting at full-volume some nights, punching so hard I damaged my rotator cuff, etc. Then, I had 1 more episode of jumping completely out of bed. It all was making my girlfriend's life hell.
THAT was when I finally told my primary care doc about it and when I learned the term REM Sleep Behavior Disorder. Then, Dr. Google filled me in on the wonderful prospect of it developing into PD, MSA, or Lewy Body Dementia.
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6 ReactionsI understand Dr Google, when what it says hits to close to home it feels like an actual punch in the gut. I have vivid dreams with recall, but not sure I do too much moving etc. My last sleep study didn’t show it, but if you don’t have an episode during the study, I’m guessing it can’t dx it, but that doesn’t mean you don’t have it. I’m 20 years older than you, so when I see folks in their 50s (some even 40s) being dxed with PD or MSA, it aches my heart. I will pray that your RSD does not progress to anything else. And, again, they are working on these things, it’s just a matter of if they can make the connection that will prevent, reverse and cure these horrible diseases.
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1 ReactionI'm praying that the rapid advancement of AI will soon lead to some breakthroughs within the next 10 years or so. I've seen AI do some truly amazing stuff, so I don't see why it can't also find some cures for incurable diseases.
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2 ReactionsPlaceholder, I know everyone doesn’t believe like I do, but I firmly believe that all things that come about to ease suffering are truly modern day miracles from God. AI could be one of those things. Our faith may expedite such miracles. That said, I also am so thankful for all the intelligent people who make it their life’s work. May they be blessed. Please post how things are going. Praying that you will never have a progression to any of these other illnesses. In teh meanwhile, live life abundantly. ❤️
Easily distracted, slowing of thought and word retrieval, fatigue and daytime tiredness, problems with sleep, funky sweating, equilibrium and orthostatic hypotension were the final pieces of the puzzle. Exercise daily, enjoy your coffee, get your
7-8 hours of sleep and do the Mediterranean diet. Read avidly and work
on New York Times games for mental exercise.
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3 ReactionsI just updated my user name. I only just noticed that I've been "Placeholder" this whole time, heh.
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1 ReactionIf you find your voice going hoarse or squeaky or quiet, that is an early sign that is rarely seen as such. I had the voice thing maybe 3 years before I was diagnosed! Think of the benefits of medication that I missed!