Hello, we're interested in finding out which early symptoms people with Parkinson's first noticed for an EPDA article. Which were the first symptoms you experienced before you were diagnosed? Was there one symptom you noticed initially, or several? We’d love to hear your thoughts. Please share below and please note if we'd like to use your comments in the article we will ask your permission first.
Parkinson's - early symptoms: Hello, we're... - Cure Parkinson's
Parkinson's - early symptoms
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Loss of smell
Bradykinesia right arm
Reduced sensitivity and ability right hand
I do wonder with all those reporting loss of sense of smell whether Mannitol at an early stage would have helped delay progression. IMO its worth taking Mannitol alone for its ability to restore your sense of smell (though I only take about 2 grams at the moment).
Hi Alex, I Can't say if the initial intake of Mannitol could have reduced or averted the loss of smell. I have some doubts about it. I've been using it for many months (9gr.) and I recovered some of the smell. The positive sides from the use of Mannitol do not stop at the sense of smell and in this forum you will find a lot of news about it. A great benefit I have derived from using this product is the repurchase of my cerebral lucidity. Best wishes
Loss of smell, left leg hitting the ground differently than the other and stiffness I attributed to a bad back.
The very first symptom was a kind of cramping the third and fourth toes of my affected foot. Using a toe spreader between those toes seemed to help. Later on, occasions of holding the affected arm in purse carrying position. Then, occasional resting tremors in the affected arm, and a change in my sleep patterns - getting up early. Finally, dragging my foot on the affected side caused me to visit a neurologist. This entire sequence took place over many years.
When first up stiffness in ankles when going down stairs
Reduced sense of smell
Sore aching shoulder 8 years before
Aching in arches of feet when walking a while or tramping
Genito urinary symptoms
In the year before diagnosis husband said I “walked funny” and I noticed micrographia, I reacted to stemetil with episode of severe tremoring. Exhaustion at end of the day. In hindsight I can see Parkinsonian lack of facial expression in photos. Noticed my stride was short.
Tremor in my pinkie finger was the symptom which led to diagnosis
A minor tremor in my fingers caused me to see a neurologist. That is when I was diagnosed.
I lost much of my sense of smell nearly 20 years before that but didn’t know enough to suspect it was caused by Parkinsons.
When I told my 30 year old sons what the neurologist said about my facial mask they said they couldn’t remember a time when I didn’t have it. Apparently I had that for a long time but was unaware of it.
Loss of arm swing, slowness of movement and then noticing I was holding my arm up bent in front of me (neatly described above as they handbag position).
Poor sense of smell but didn’t relate it to PD at the time.
Diagnosed September 2018 The two earliest symptoms were 2-3 years prior which was dragging my feet and erectile disfunction. 1 year prior to diagnosis I was experiencing some sleep issues and excessive night sweating. 6 months later I consulted Dr Google when I started getting micrographia. That sealed the deal for me but it took another six months to see A neurologist to confirm my diagnosis.
I first had a slight hand tremor and walking didn’t feel “natural”. I felt like I had to force it.
Slight tremor in my right middle finger.
Brain fog.
Wife pointing out no left arm swing and stiff body. Felt unnatural running, she said I was leaning forward.
Hi my dad asked his old dr a couple of times if he had Parkinson’s and said no. So my mum reports that he had a tendency to be vacant from conversations while still under the old dr. When he and mum moved to near me (from 400 miles away) I noticed his sense of smell had gone, previously his sense of smell was excellent. Then he started with a tremor on just one side and that led to the diagnosis. It was only at the time of diagnosis that he was told he had R.E.M. Sleep Behaviour Disorder which led to him nearly killing my mum in his sleep some years prior whichbthe old dr had put down to a drug side effect. My dad is also registered Blind, hence his excellent sense of smell, and I call Parkinsons the curse of the blind man. He’s always relied on his sense of smell but what’s worse is the tremor has made reading and writing Braille very difficult!! I know my father would be happy for you to use this comment or any part of it in the future.
Twitchy finger and loss of sense of smell
Reduced sense of smell
Handwriting
Shoulder pain - Dr thought it was frozen shoulder and I had steroid injection.
Pain in big toe
Right hand tremor - Dr thought it was due to underactive thyroid and medication so after blood test my dosage was reduced but hand tremor remained.
What I felt was to get very immotional & start weeping.
Another thing when I was walking my brother pointed out that I was not walking as a normal person walks.
Excessive sleeping.
Tremor in my left index finger which I couldn't control. Very periodic in the beginning.
Constipation, stiff hips, micrographia, loss of sense of smell, tremor on waking left side, anxiety.
In that order over about 8 months.
Sense of smell and taste, fluctuating. Erectile and urinary problems. Daytime sleepiness, and not sleeping well at night. Stiffness of walking, with left foot dragging a bit, along with cogwheel rigidity, in left arm, additional loss of natural arm swing. Those were the main early symptoms, started about 8 years before I was diagnosed, and subtlety getting worse each year. Family doctor did not give a reason to me, for those symptoms, when I addressed them, Even after these symptoms progressed to falls with injuries, when I froze in place, and just toppled over. My family doctor, never referred me to a neurologist. It wasn’t till I moved from a small town, to a big city, that my internist told me that it looked like Parkinson’s to him, and he referred me to a movement disorders, specialist/neurologist right away, who diagnosed me right away. By that time I was having severe resting tremor of left hand.
18 years prior, depression and anxiety with severe insomnia. I believe it was related because although antidepressants helped, I never felt relatively “normal” again until I started dopminergic treatment.
1 year prior to diagnosis, noticed clumsiness of left hand and fasciculation on back of that hand with occasional twitching of ring finger.
Anxiety, depression, roseacea, masked face, no arm swing, flailing around in his sleep, erectile and urination problems, feeling like he was coming down with the flu every month at least, apathy, chronic fatigue, disregulation of temperature system.
Then hands stopped working very well led him to go to doctor about it who sent him to the neurologist.
Most symptoms now resolved or reduced due to exercise and supplements listed on my profile. Thank God🙏
Loss of arm swing and buzzing in fingers with a loss of dexterity
Tremor both hands and slow movement. Took five years to get correct diagnosis of PD after first visiting neurologist
"It’s amazing to the patient that her diagnosis was made on the basis of a symptom that she’d spent years complaining about — to anyone who would listen, except her doctors. And yet it was right there all along."
Nyt:
Neurologist that I first visited insisted that it was essential tremor. Treated with drugs for essential tremor for two years and nothing improved. I eventually got a new neurologist who diagnosed obvious Parkinsons
First noticed tremor in right hand, smaller writing and stiff arm when walking. That was 3 years ago. Things have not progressed. I am 72, female.
Left hand tremor, weakness and tension in left arm, fatigue when running, weak bladder
I'm answering for my hubby...
during his daily walks, he felt like he was falling/leaning forward
when resting on the couch, he felt like his right leg was moving but no one else could see it
he felt like he was shivering on the inside
moving slowly - neither of us noticed this, but others did
I noticed drool on his pillow in the mornings
aching shoulder & stiff neck for several years
several years before, but not very often... yelling/talking when dreaming & also acting dreams out usually by hitting something; he was usually agitated or angry at something during his dreams - punched the wall once & almost hit me once
also he had a poor sense of smell for several years
I didn't notice but other family members (our children) noticed his facial mask during the holidays & that he wasn't as animated or involved with family conversations...he was quieter
After his complaints about shivering on the inside & feeling his leg moving when no one could see it, I googled and found one post about shivering on the inside and the person was diagnosed with Parkinson's. I made an appt. with our family Dr. who confirmed my suspicions and shortly after a second appt. with a neurologist who specializes in Parkinson's.
I forgot one....he was thinking slower, answering questions slower, etc
My husband had loss of sense of smell, ‘running like a duck’ when playing squash and I noticed his shoulders gradually stiffening up as well as lack of arm swing at least 3 years before diagnosis.
Also frozen shoulder at this time which was cured with physio and an injection.
A slight tremor December 2012 when cooking that seemed to right itself.
Issues with preparing food using implements were causing problems.
No issue with walking or gait.
Dx by Neuro in 2015 symptoms weren’t severe.
Trouble writing and cleaning my teeth
I had noticed I was losing my voice but thought it was due to my job as I spent a lot of time on the phone. I knew my left hand was becoming lazy using the computer keyboard but what actually made me seek help was the urinary urgency. My father had MS and I was worried I had the same.
In the 1970s, people commented on my "facial mask".
over 60 years ago, one of the reasons I gave up learning the piano was that I developed a tremor in my left hand small finger. I was diagnosed 5 years ago when the tremor was more pronounced and affected all my fingers, writing and keyboard use.
Tremor in right hand - noticed by others before me!!
Whenever I used to feel angry or cautious I felt tremors in my body. I thought it must be my emotions. Later left hand had minor tremors. My general physician asked me for thyroid check , which was normal, I ignored .
Few months after, my left leg started shaking occasionally and my speech went unclear. I thought, I am losing confidence in me but when people started asking me to repeat what I said, made me concious of some problem and I went to neurologist.
He suggested MRI and confirmed PD but the Head of neurology department got SPECT, Tremor analysis and finally PET of brain before starting medicines.
hand writing became small, face frozen, small resting tremor, tripping on nothing, tired, sense of smell gone.
Twitching of the left thigh muscle, twitching / tremor of the left pinkie when typing, no left arm swing, rigidity /turning inside of the left hand and foot, loss of smell (although now I feel I can smell better again), depression, crying frequently...............
I was diagnosed almost 3 years after these symptoms occurred. And I am actually glad that it wasn't earlier - what would be the point?? Psychologically, this revelation had a disastrous effect on me......
First symptom was that my handwriting got exceedingly small.
Best wishes for the article.
Natasha
My husband’s loss of smell
Then he began to drop things from his right hand
His sleep disturbances (vivid dreams, falling out of bed) turned me to Dr. Google where I found Parkinson’s as the suspect diagnosis. It was a couple of years before I managed to get him to raise the issue with a doctor or even near a neurologist. That was 15 years ago. He continues to do fairly well with minimal medications, but it has been a roller coaster finding the proper doses.
first sign: lack of right arm swing
...
<several years elapsed>
...
second sign: right hand tremor
third sign: right arm bradykinesia
2009: sciatica and frozen shoulder, plus rigidity all on one side of my body.
2016: lost arm swing, leg drag and acting out dreams
Diagnosed with pd in 2017. Akinetic-rigid form.
I've noticed many say their symptoms started after a emotional or physical trauma; mine started immediately following a fall when I broke my ribs. Initial symptoms were loss of smell, tremor in feet, and loss of arm swing.
I was doing a lot of writing and over the course of several hours, my writing became teeny tiny. Then one afternoon Scott and I were standing together jn. the backyard and suddenly I fell straight. back .
Hi there . Looking back, my symptoms started 2-3 years before diagnoses. Being a runner, dystonia in my left foot and leg . I couldn’t make my foot work, even took my shoe off one time thinking it was the shoe. And another symptom was falling. I was running an ultra and fell 5 times and there was nothing around for me to trip on. Thank you. Karen
Loss of smell
Foot cramping
Internal side cramping
No right arm swing
Slight twitch in right hand fingers
Difficult typing and writing with right hand
Twitch progressed to tremor in hand
Right leg drag
High anxiety, so elevated I could not stand at times, severe lower back pain after standing up only 10 minutes, right-hand tremors off and on. Smell and taste evading me days at a time. All these things were happening a year before my diagnosis.
Right index finger tremor, first noticed when I watched scary or suspenseful movies; overall lack of muscle strength/endurance; decreased right arm swing
Right arm quit swinging, tremor in right arm, hurting in right shoulder
Small resting tremor left side hand
Stiffness lower back
Shoulder pain stiffness
Drop foot left side, dragging foot
Slow walking
Forgot to mention in my earlier reply:
5. My eye lids fluttered and my teeth chattered when I laid down on the bed to go to sleep
Slowness and discomfort in walking.
My first symptoms were a tremor in my left hand, a month later in my left leg and a bit of social anxiety several years earlier..
I first became aware of my Parkinson's disease almost 2 years ago when my wife noticed my left arm wasn't swinging when we were out for a walk. I had lost my sense of smell several years ago but wasn't aware that this was an early sign of Parkinson's.
Right hand tremor. No right arm swing. Anxiety.
Left hand dexterity poor, reduced arm swing and left leg drop foot. Thought it was compressed nerve in cervical. Had double fusion surgery, did not help. Determined PD at this point.
Loss of smell. 30 years prior to dx
Weird ache while lying down moving mostly from my crotch to my feet - 20 years prior. I’m thinking it was related because of feet issues now. Not sure.
Left leg began moving in its own when I was doing something where I needed to concentrate. - this is what led to my dx.
Holding my left arm still in front while walking.
Loss of sense of smell, left hand flapping when stretching on waking up. Then fingers of left hand not moving fully up when releasing sax keys when playing
Internal and head tremor (led to diagnosis of ET and later dystonia), reduced smell, high anxiety, shouting out loud in my sleep, finger tremor, stiff central body, numbness in left leg occasionally.
Later: dragging left leg sometimes. Still not diagnosed but on levodopa.
I first noticed sowness and stifness
Constipation and paralysis
Peripheral neuropathy (tingling/numbness in fingers and toes, frozen shoulder, later finger tremor on the same side, diminished sense of smell.
Answering for my husband ...
cramping in the toes (following toe surgery)
Then the tremor and loss of arm swing .... then diagnosis
My first symptom was the fact that my balance was messed up with the fact that I could not back up. What I mean is when I walk backwards there’s nothing to tell me to stop and I end up falling on my behind
Reduced sense of smell
Constipation
Unable to wave my affected hand (loss of dexterity)
Erectile Dysfunction
In order of progression (approximate years as things seem to creep up steadily and I'm never 100% sure of when things actually started):
2009 Lost sense of smell, years before any other symptoms
2012 sleep pattern changes, only get 4 hours before waking up
2012 early(ish) menopause aged 45
2014 Left heel stopped striking the floor
2014 Cramp in left foot when running down hill
2014 left toe next to big toe starts to scrunch
2015 Left arm doesnt swing very far
2015 cramp in left foot when running generally, not just downhill. Stiff left ankle/foot, starting to occasionally turn outwards
2016 left arm doesn't swing at all
2016 stiff left shoulder/arm/hand and tingling left pinkie finger.
2016 left ankle/ foot turns outwards when walking now, not just running, have to stop and pull ankle/foot to relieve it and carry on
2017 whole left side stiff
2017 diagnosed with PD
2018 arm/hand even less movement
2019 all left toes scrunching
2019 arm/hand much weaker
Throughout all of these years I paid an awful lot of money to physiotherapists, chiropractors etc but everything was treated as separate issues. Also from 2016/17 I've noticed I get more anxious and not so confident, plus my memory/cognitive thinking not as good as it was but still ok.
Some of these could also be associated with menopause 🙂.
And of course I forgot to mention the dreaded constipation throughout the years....!
Answering for my spouse, now in his early 70s:
Constipation since mid 30s. Always needed a nap, however brief, after a meal, in his 40s. Occasional spastic hand twitches for no reason. In his early 50s he began to experience RBD and REM sleep disorder, so badly he would whack and kick me, sometimes sit upright in bed, screaming. After a sleep study they said apnea, use a CPAP, 50% chance of developing Parkinson's later. Also around this time he would experience trouble swallowing, he couldn't get a vitamin or piece of meat down, stuck in throat, and he couldn't clear it for 24-48 hours.
Mid 50s his stride was shortening and he complained of shoulder pain. By late 50s there was a bit of forgetfulness and apathy at times. More frequent naps.
60s even more naps. Lost interest in chores (well, to be honest, who really likes cleaning the gutters?}. Said he felt a little off balance and had me do the ladder chores. Repeated questions several times. Definite erectile dysfunction!
By late 60s it was apparent to everyone but him that something was wrong. Slower, hunched walk. Glazed eyes, frozen face. No arm swing. Slight tremor right hand. Dragging foot. İnconsistent attemtion--one hour he would be clear and present, the next hour, staring off into space. Watched the same programs on TV and discussed each repeat he had seen 6 times as if it were brand new. Microgarphia. Unsteady gait.
At age 71 Dx'd with PD. He began with 1/2 tab Sinimet 3x daily. Upped it to 1 tab, 3x daily. Now here it is, 18 months since Dx, he's up to 750mg Levo a day, but it doesn't do much for tremors. The Sinimet does help his balance a bit, but most importantly it helps him with clear thinking, so he is like his former 40 yr old self. As soon as it wears off he is like a 90 yr old with dementia.
Personally I can't understand why the C/L improves his thinking and cognition so much! Like night and day. Anyone else experience this?
Hand tremor, but I remember wondering why I shuffled across the parking lot to work before I was diagnosed.
Hi
I am replying on behalf of my mother and she very would be pleased if you used this information.
Initially, she noticed difficulty in writing, anxiety, strength of voice which became very quiet, then control over saliva (ie drooling) and fatigue.
We when to the doctor numerous times with these symptoms, but no solution even mentioning the possibility of it being Parkinsons.
Eventually, after nearly 2 years we went to a private Geriatrician who transferred us to a neurologist who immediately diagnosed Parkinsons and prescribed Sinemet. We were then assigned to a movement disorder clinic. My Mother by this point was starting to struggle with walking and balance.
I hope this helps.
Dragging left foot when walking. Noticed change of sound of shoes scuffling on pavement.
Stalling the car - which I first put down to new shoes.
Periodic tremor left hand and wrist that stopped if I gripped something with left hand. Tremor worse when cold weather or if stressed.
Disturbed sleep- 'acting out' dreams.
Extreme tiredness late at night. Difficult to stay awake.
Wife complaining that I was walking too slowly.
Not sure if ever had sense of smell. Certainly not got one now.
Right hand tremor started 2016, mis-diagnosed as ET. Prior to that had balance issues, numbness in toes, dragging right leg going back at least several years. Finally saw a neurologist in 2017 who took about 15 minutes to diagnose PD. Now 2.5 years later many early symptoms have resolved. No more facial paralysis, speaking much better, balance and gait much better.
Right foot dystonia when running more than 15 years prior to diagnosed.
I know I am usually but I had nothing until "the day I got PD". I got up, went to work - no symptoms. Drove home and by the time I got home my left side had full on tremor, loss of fine motor in my hand, my toes were paralyzed and i had dystonia in my left arm. 30 minutes before I was normal. No one initially thought it was PD because of the sudden onset.
freezing of foot while walking, small handwriting, sense of smell and taste,balance. since, excess saliva, trouble swallowing,walking, speech, unable to stand for more than a minute.
My left side - struggled to " keep up " with my right side. Cog-wheel movements. Fine motor skills - typing was hard. Left leg "dragged " as I walked, arm didn't swing. Brain fog. Stiffness, " soreness / pain " in my arm, wrist, hand. Because this only affected my left side and my speech was / is impared, I was convinced I had a stroke. Been " chasing " this since last November 2018. Started Sinemet in July 2019. Oh yeah, I had surgery on my left shoulder June 26. I attributed my loss of strength to surgery. My PT noticed my " movements ".... he'd remind me to swing my arm, pick up my foot...Clearly, PD affected my shoulder rehab.
toe curling
right hand/arm tremor first symptom, followed by balance issues, occasional choking while eating /drinking, and heavy drooling. Diagnosis summer2019.
Tremor in left arm developed Nov 17, doc suspected P from rigidity test on my wrist.
But now I'm aware of many earlier symptoms, including in my 30's and 40's when I had frozen face in social settings and people would say to me 'cheer up, it probably won't happen'. This used to drive me bonkers as I felt perfectly 'normal' at the time.
Loss of smell, micro gtaphia, slower fine movement, facial mask
General core body stiffness and muscle spasms, especially in front of thighs. Shorter steps, not picking up feet. Restless legs. Severe constipation and occasional urge incontinence as well as frequent inability to start urinating. Talking, yelling in sleep and vivid dreams. Heightened gag reflex. Soft voice. 6 years since diagnosis and I still do not have any noticeable tremor.
I thought I had carpel tunnel because my hand would hurt when I wrote. Went to doctor & he noticed a drag in my leg & I can wasn't swinging my arm. Sleep was not good do I was fatigued all the time.
My husband intermittently had anxiety, fatigue, balance issues, stiff sore shoulders, right index finger shaking, then loss of smell, slowed walking and jerking in bed during sleep and slowed thought processes and loss of facial expression. Diagnosis in 2012.. Eventual loss of arm swing, right hand dominate tremor and gait issues, soft voice, swallowing issues, runny nose, drooling at night, minor short term memory issues, intermittent apathy, some visual disfunction-can't see things when looking for items.
My first noticeable symptoms were a slight twitch in the ring and middle fingers on my left hand, followed by curling of the toes of my left foot. Both got progressively worse for about 2 years before my diagnosis in June 2012.
Chronic constipation as a child. Loss of sense of smell in my thirties. By my forties, hiking uphill was impeded by difficulty with my left leg. At fifty left toes curled painfully and a tiny tremor began in my left leg. Diagnosed in early fifties.
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