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

Posted by Singularity @azsingularity, May 8 6:06pm

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 renhandi01
renhandi01 | @renhandi01 | May 28 9:16pm
In reply to @seniormed "There are non motor symptoms with no tremors apparent that can precede obvious movement disorder. Balance..." + (show)
Profile picture for seniormed @seniormed

There are non motor symptoms with no tremors
apparent that can precede obvious movement disorder.
Balance unsteadiness of gait, orthostatic low blood pressure ,lack of measured heart rate variability, insomnia, ED and atypical sweat changes are some.
There are new tests of skin samples to show alpha synuclein that may assist in earlier diagnosis.
,

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what do you mean sweat changes? and heart rate variability

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renhandi01 | @renhandi01 | May 28 9:22pm
In reply to @cctee "Joe, Both you and your wife have PD. That’s got to be unusual. You have the..." + (show)
Profile picture for cctee @cctee

Joe, Both you and your wife have PD. That’s got to be unusual. You have the right idea, stay positive. Blessings to you both.

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Do you have any idea why both of you had PD? My sister and her husband both were diagnosed with it. He passed in 2023 and she is pretty bad now. They thought the radon in their basement before they had it remediated was the cause.

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seniormed | @seniormed | May 28 9:33pm
In reply to @renhandi01 "what do you mean sweat changes? and heart rate variability" + (show)
Profile picture for renhandi01 @renhandi01

what do you mean sweat changes? and heart rate variability

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Night sweats and groin sweating. Slow heart rate pickup with standing and movement. Little change of duration beat
to beat as measured if you have a monitor or Apple watch.
Autonomic malfunction and vagus response not normal.

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radioactivems | @radioactivems | May 29 11:53am

I started noticing a loss of fine motor skills in my right hand, which made it difficult to write or use a computer mouse at times. I thought it was caused severe arthritis in two of my cervical Vertebrae. However, after I had those Vertebrae replaced, the symptoms didn't go away.

In November, I started noticing tremors in my left hand. Then in January, I went to my primary care doctor and he did some physical exams which indicated I could have PD. I Then underwent an MRI, which didn't indicate any abnormalities, according to the radiologist. I was most alarmed by the problems I had with my gait. Before I started having symptoms, I could leave my wife in the dust while walking. Now, I can't keep up with her. My doc also put me on Primadone for the tremors.

In April, I was seen at Mayo. My neurologist had me go through a number of physical movement tests and a battery of diagnostic tests. He also started me on Carbidopa-Levidopa to help with my symptoms. With the medicine, I have good days and bad days. I have noticed a slight improvement in my symptoms.

I have a follow up appointment with my neurologist in July.

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radioactivems | @radioactivems | May 29 12:06pm
In reply to @seniormed "There are non motor symptoms with no tremors apparent that can precede obvious movement disorder. Balance..." + (show)
Profile picture for seniormed @seniormed

There are non motor symptoms with no tremors
apparent that can precede obvious movement disorder.
Balance unsteadiness of gait, orthostatic low blood pressure ,lack of measured heart rate variability, insomnia, ED and atypical sweat changes are some.
There are new tests of skin samples to show alpha synuclein that may assist in earlier diagnosis.
,

Jump to this post

Other than the tremors, problems with my gait were the biggest attention getter. I used to be able to leave my wife in the dust when we were walking. Now, I can't keep up with her. My neurologist hasn't dxed me with PD or Essential Tremor (my sister has ET). However, he is not ruling out the possibility that I might have both conditions. My tremors mirror ET, but I have a number of PD symptoms.

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janet42 | @janet42 | May 30 10:53pm
In reply to @radioactivems "I started noticing a loss of fine motor skills in my right hand, which made it..." + (show)
Profile picture for radioactivems @radioactivems

I started noticing a loss of fine motor skills in my right hand, which made it difficult to write or use a computer mouse at times. I thought it was caused severe arthritis in two of my cervical Vertebrae. However, after I had those Vertebrae replaced, the symptoms didn't go away.

In November, I started noticing tremors in my left hand. Then in January, I went to my primary care doctor and he did some physical exams which indicated I could have PD. I Then underwent an MRI, which didn't indicate any abnormalities, according to the radiologist. I was most alarmed by the problems I had with my gait. Before I started having symptoms, I could leave my wife in the dust while walking. Now, I can't keep up with her. My doc also put me on Primadone for the tremors.

In April, I was seen at Mayo. My neurologist had me go through a number of physical movement tests and a battery of diagnostic tests. He also started me on Carbidopa-Levidopa to help with my symptoms. With the medicine, I have good days and bad days. I have noticed a slight improvement in my symptoms.

I have a follow up appointment with my neurologist in July.

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What is the strength of your carbiolevadopa and how long before you noticed slight improvement?

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radioactivems | @radioactivems | May 31 2:20am

The strength is 25-100. I'm taking it 3 times a day. I think it took about a month before I noticed any improvement. I still have a long way to go.

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janet42 | @janet42 | May 31 11:58am
In reply to @radioactivems "The strength is 25-100. I'm taking it 3 times a day. I think it took about..." + (show)
Profile picture for radioactivems @radioactivems

The strength is 25-100. I'm taking it 3 times a day. I think it took about a month before I noticed any improvement. I still have a long way to go.

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Me too! I was diagnosed on May 8. I take 1 10-100 tablet 3 times a day. Minute improvement so far. Nice to know I can up my dose with Dr consent.

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radioactivems | @radioactivems | May 31 1:24pm
In reply to @janet42 "Me too! I was diagnosed on May 8. I take 1 10-100 tablet 3 times a..." + (show)
Profile picture for janet42 @janet42

Me too! I was diagnosed on May 8. I take 1 10-100 tablet 3 times a day. Minute improvement so far. Nice to know I can up my dose with Dr consent.

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Like I said, I have good days and bad days
There are some days when I have very few tremors. Then there are days when I have trouble typing on my phone.

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radioactivems | @radioactivems | May 31 1:30pm

I fell several times. I am also unsteady when I walk. I can't keep up with my wife anymore. Of course, these are in addition to the tremors in my left hand.

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