It’s Time to Redefine Early Stage Parkinson’s

10 years before I was diagnosed with PD at age 54, I had frozen shoulder in both my shoulders for a year! It was brutal. I think back on that time and wonder if it would've been better or worse to have been diagnosed then. I think it was better that I wasn't diagnosed...maybe. I still had 10 years of a very satisfying career ahead of me, my kids were teenagers, and I don't know if I would've had the same energy for the career and my busy life if I knew that I was living with Parkinson's. It's hard for me to say what would've been better.

As has been stated everyone's initial symptoms are different.
Mine are:

I noticed some time ago, before I was "officially diagnosed
that every now and again I couldn't pick up something first
time, it would slip from my grasp.
It was something small, so no dropping of a glass cup and the
like.
It then progressed to my left hand when I found I had a
problem 'positioning' the fork in my hand.
My left foot occasionally stumbled/dragged on the floor.

Little things like that happened but nothing I really worried
about, it was more of a hinderance than anything else.
I just put it down to micro seizures. I do suffer from seizures of the left temporal lobe.
My seizures are a first cousin to epilepsy but not as serious.
I have it well under control with my medication.

However one day I was eating and both my hands trembled, not
violently but enough for me to drop my knife and fork.
It must have been only for a few seconds, although it felt for
longer.

That scared me enough to make an appointment with my neurologist the next day. He could only see my in a week.
He did the requisite tests and said he felt that I had PD, however of course no one could state it definitely at that time.

This was about 7 months ago now and he has confirmed his diagnosis, but again says "perhaps, maybe...."

I have no problem with the fact, well of course I have a problem, however I am not prepared to sugarcoat the situation, I have it and have accepted the fact, and must make the best of it.

Subsequent to that I have noticed a few further aspects, such
as I find I am hitting the wrong keys on my laptop whenever I
type.
I have also noticed that although I am not over anxious or
depressed, I find myself getting very emotional at times even
though the situation I am getting emotional about is not
really sad at all and may even be on TV.

I do know this is a side effect of my seizures however it seems to be getting worse. It does not affect my way of life in any way, just weird.

I hope that help the research a bit.

Thank you, Dr. C. I appreciate your columns. Three years ago, after I retired, I started feeling very lightheaded with balance problems. For a week or two I clomped: kicking out my feet and slapping them on the floor. Doctors had no idea what was happening. I also have pressure in my head, as if my brain is wrapped with insulation. This summer I saw a specialist at the University of Michigan who said I have early stages of PD. I also see a local neurologist who thinks I may have Parkinsonism.

Hello and thank you for the article .
I had some of those symptoms years before I was diagnosed .
Cramping and spasms and no one could explain .
Arm swing issues , and
Doctors temple on your nerve damage and spinal damage with mo clear answer.
I weight train and do balance training now . Helps tremendously . Lots of core work to help with my stability .
Thank you again
Joe A

I was diagnosed a year ago, just before my 70th birthday. For the prior few months my walk had become a shuffle and I often held my right arm in a bent position without realizing it. Tremors were only upon waking up or occasionally during the day when stress increased, although my primary care doctor did identify a resting tremor. C/L is working well for me 3X/day with ER overnight. Exercising more than ever and doing Rock Steady boxing seems to have kept me at about same level for first year.

Earliest signs were reduced smell and also shuffling gate. Probably 2-3 years ( maybe more) before mild tremor started on left hand and subsequent diagnosis of PD.

Diagnosed 2018 age 61 when rigidity on left side became unbearable, but constipation and bladder problems began in my early 40s.leg cramps began in my late 40s,also sense of smell disappeared then too. 2016 started severe back pain,but back spasms began in my early 50s. Extreme anxiety also began in 2016,and in 2017 the "strange walk" started along with odd stiffness in left shoulder causing a "chimpanzee" look. I no longer swung my arm . In 2017 also started to catch my toe(left") going upstairs, and foot and left hand cramps became regular. I hope this may help with your research.

I am 66 years old, have REM Sleep Disorder and would like to be involved in any studies or activities that would slow progression to Parkinson's Disease. My father had a mild case of Parkinson's and his mother (my grandmother) had a more severe case and was disabled by the time she was 75. I am starting an exercise program and am taking COQ 10 supplements right now.

Dr C,
I to am very involved in researching the evolution of Pre-Parkinson's Disease as I have many of the symptoms including clinically diagnoised iRBD. I had to self diagnoise myself and the medical team at USC that confirmed my own diagnoises provided me with ZERO interventions or additional test. I was sent home with a "wait and see" prescription that stated once you show motor symptoms we can prescribe a drug to mask the condition. I believe strongly the solution lies in early identification and motifications to return the body back to its predesigned balance. I am currently testing probiotics, prebiotics, diet elimination, detox programs and exercise to eliminate, reduce the number and intensity of iRBD and other symptoms. I have significatnly reduced the intensity and learning how to reduce the number by applying Braak's theory of staging in PD. I have been able to identify significant external toxins in my system that will need to be elimianted. My gut microbiome resembles that of one in early stages of PD. I am an ultradistance trail runner, have sporatic sever leg cramping (thigh and toes), possible foot drag (known to stumble while trail running - did notice two years ago a few falls with left toe and my cramping is in left side, bradycardia, orthostatic hypocardia, smell declining, low butyrate (loss of body odor), and constipation to name a few. I am very confident I am on track to find a solution before and significant motor issues develop. I am building a website that looks to share what I have learned and will allow others to share their sucesses and failures as we consumer researchers race for a solution (cure). Pre-PD is very complex and has many moving parts. Success will be when treatment addresses the patient holestically instead of treating one symptom at a time. History has shown this to be a total failure. This is just the tip of what I have accumulated in my research. Send me an email and would be glad to discuss further what I have learned and what I am planning in my research as I am activly looking to colaborate with other researchers with the same desire.

I'm still considered 'early Parkinson's'. Diagnosed feb 2020 after DatScan. First symptom...Left hand tremor ar rest

My first symptom about 3 years prior to being diagnosed was phantom odors. I didn't lose my sense of smell, however I would smell odors that didn't exist, such as a charcoal grill burning in the library, or a dirty baby diaper out in the woods. Shortly thereafter came the "slapping left foot" in my gait along with the "frozen shoulder" and tremors in my hand. All of these on my left side. I saw multiple physicians until a neurologist suspected Parkinson's and finally ordered a DAT scan which verified the diagnosis.

I have nocturnal leg cramps very bad. I was wondering if this is the start in Parkinson’s. I’m 67 years old. My doctor says I have dementia too.

I had annual Executive Key Man physicals in Houston for ten years, no problems. Then I retired at 69 because I could no longer run the company to my own standards. Doctors did not tie loss of smell and general slowing of thinking, reduced capacity for long and deep analysis and planning, loss of smell 10 years before and uncontrollable need to nap at 10 and 2 to any sort of diagnosis.
Then I retired to a modest sized city in East Texas. A couple years in (I was 71] I walked up to my PA’s desk for a routine visit and he glanced up and said “you have Parkinson’s - you aren’t swinging your arms”. Thus began the journey. Five years later I still have no tremors but recently I’ve slowed down when moving and my balance is a bit off). I turned 75 a few days ago and had cognitive testing last week (I feel myself slipping and I don’t care for it). I aced about half of it, average on some and did poorly on some. I see my neurologist in a few weeks to see where we go from here. I’ve taken Sinemet for 5 years, added Azilect a couple years ago and added Memantine last month when I told my Neurologist about the slippage and he scheduled the cognitive testing. It is apparently one of the problems I have thanks to Agent Orange. Also have Raynaud’s, restless legs, sleep apnea and the usual constipation. Ain’t life fun.
Good luck with your research.

Hi , I had increasing tingling in my left hand left leg and foot and left side of face and tongue , it felt numb but wasn’t . Then I proceeded to have a sudden onset of severe debilitating fatigue where i found walking or any activity extremely exhausting and needed to lie down most of the time. I was too tired to eat rapidly lost weight and had constant nausea. I was hospitalised for 3 days had mri of brain and spine to rule out MS and cat scan abdomen to rule out any mass. Discharged , no known cause diagnosed with chronic fatigue and fibromyalgia, had some sleep studies on neurologists recommendation and lung function tests. A miriad of blood tests , no know cause , diagnosis idiopathic functional disorder. I was unable to work . Slowly regained some control over the fatigue able to perform activities of daily living after a few months but wit continued severe fatigue, unable to go even for a short walk. After 3 years I decided to pay to see a neurologist as I was still sick had twitching fingers on left hand and what I thought was slight foot drop on left side. she said she could see a few neurological symptoms she wanted to keep an eye , wanted to see me in 6 months . I went back and she said she thought I had slowness on the left side combined with twitching and postural tremor she suspected Parkinson’s disease ordered a Dat sca and my diagnosis was confirmed.

I was diagnosed in 2016 at age 57. Symptoms included no arm swing, left hand tremor, micrographia, anxiety under stress. Since then I've become more aware of slower, smaller movements. Five plus years prior to diagnosis I had lost my sense of smell, but did not know it was a PD symptom at the time. My late father was diagnosed with PD at roughly the same age as me. I've been tested for known genetic markers but they were not found. Currently taking only Rasagiline. Retired 18 months ago and was exercising heavily until COVID shut down the gyms. Now mostly long walks with a new puppy.

Some of my first symptoms, which preceded my diagnosis by ten to twenty years, were: constipation, migraine with aura (although that's not a PD symptom, my understanding is that it's a prodromal symptom), REM sleep disorder, dry eyes/throat, stiffness, tremor (diagnosed in my forties as essential tremor), IBS, restless legs syndrome, muscle twitches, insomnia, and fatigue. I always felt that these seemingly unrelated symptoms were, in fact, somehow connected, and yet no one was able to connect the dots. I also had hypersensitivity to temperatures and Raynaud's syndrome, which I understand aren't related to PD, and yet I wonder if they might actually be in terms of disregulation of the autonomic nervous system. I hope my response will help with your research.

My husband was diagnosed 5 years ago at age 56. For a couple of years prior to that, we noticed a new and pronounced slowness of movement, especially when doing things like pulling a card out of his wallet. He would also just not use his right arm, resulting in odd behaviors like awkwardly turning a steering wheel with just his left hand while his right hand rested on his leg. About a year after that, his gait changed, with the foot drag and not swinging his arms. That sent us to the internet, where we discovered why he always looked mad as well.

My arms would ache terribly, no specific muscle just all over. And I also felt like my leg muscles were quivering at night in bed.

Hello
My signs started 17 years ago, with loss of sense of smell. I had a CT scan, nothing abnormal was noted. I was seeing strange shapes (like a crouching lion instead of a pile of leaves); the ophthalmologist noticed an 'expressionless' face. I struggled with depression, constipation and progressively stooped posture until I was diagnosed with PD 3 years ago because a foot tremor appeared. I never imagined it could be PD and it was a huge blow. I now exercise and take CD/LD but I wish it had been diagnosed earlier.
Thanks for reading this.

My earliest prodromal symptom was an altered sense of smell, including a hallucinated odor like stale tobacco or old sawdust. That began around 30 years ago as far as I can tell and has increased slowly. About 20 years ago, reduced mood regulation worried me enough to see a psychologist for a few months; in fact I retired a couple years later at the age of 55. Minor tremor showed up around 15 years ago, diagnosed at first as essential tremor. Something like 10 years ago I started occasionally catching my toe going up stairs. Four years ago the tremor was obvious enough that I was referred to a neurologist who said I had a few symptoms of both PD and ET, and scheduled a DAT scan which confirmed the PD. Now taking sinemet and amantadine. I feel very lucky that I am still pretty functional and the disease is progressing very slowly.

Hi Dr C
I am 54 years old and was diagnosed with Parkinson’s 2/18/20. I have had many issues for more than 10 years prior. I saw various neurologists and finally a movement specialist who was able to diagnose on my first visit (I am so thankful as I have a name for what I was experiencing) Low blood pressure, rapid heart rate, severe constipation, vivid dreams, frequent urination, blurry vision, unable to complete tasks. disorganization, heat intolerance, sleepiness, right side weakness, right side of face constricting, inside shakiness, fingers twitch when trying to text, putting earrings in my ear was a little challenging, buttoning small buttons, dropping things, muscle spasm in my toes, back spasm, headaches, dizziness, allergies to smells especially perfumes, confusion, no motivation (I have experienced grief & depression but this was a feeling I could not overcome and I have always been a positive person. I really thought I was going crazy and I started isolating). The right side of my body felt as if it did not belong with the left side. I would try to explain to family and friends, everyone said it’s stress. This thing was taking over my life until I was diagnosed and given carbidopa/levodopa. I was making irrational decisions and nothing made sense anymore. Over the last 3 years my symptoms were becoming worse and I ended up in the hospital yet again for a 4 day stay and as always MRI’s and Scans showed nothing. The neurologists decided I was closer to 30 than 60 so I was ok? An urgent care doctor suggested a specific neurologist and that is how my life changed in February. It took over ten years since my first visit to the hospital with my face tightening. 3 times I was told by hospital ER it was a TIA. I am nine months in with my diagnosis. My mental symptoms are more challenging and I don’t know what lies ahead but I came to terms with the diagnoses last night and I found your page today. I hope this is helpful. Thanks for taking the time find out about the other symptoms of this illness.

Parkinson's was suspected 8 years ago when I was 77 with the only initial symptoms being balance problems, masked face, no arm swing or blinking. They called it Parkinsonism for a year. When extreme fatigue set in and balance became worse, my movement specialist decided to try carbidopa/levodopa and fatigue got better. When I stopped the medication I got much worse, so Parkinson's was diagnosed. I suspect my late diagnosis is related to the years I spent the whole morning 5 days a week in the gym after I retired and eating a plant based diet for the past 30+ years. I have accumulated additional symptoms during the past years, but fortunately, none of them has gotten worse, with increasing the medication only a little over the years. Urinary issues were a big problem gratefully solved with Men's Liberty. Anxiety has been helped with a low dose of Lexapro. Fatigue and strength have improved with exercise: walking outdoors and Theracycle for an hour 5 days a week and Zoom boxing for PD 3 times a week. I have no tremor, no pain, no loss of smell and sleep well. I do have a little drooling, swallowing problems, but my voice is strong. My REM sleep problems don't bother me because I don't wake up and my wife is a sound sleeper, so it doesn't bother her except for the few times I have punched her. My biggest problem is some bowel incontinence which causes a lot of anxiety and embarrassment. It's gotten a little better working with a gastroenterologist.

Dr. C. your article and the following comments are very interesting. I have had anosmia for 20 or 30 years and RBD for 15 or more years. Combined with difficulty marrying a screwdriver with a screw (often needing my left hand to guide the blade) and some difficulty swallowing, say grape skins, lead me to self diagnose PD which was confirmed 8 years ago. PD is progressing very slowly and I am fortunate not to suffer from most of the possible ailments. Levedopa seems to have little effect and I have reduced its dosage to mainly twice a day despite advice from my neurologist as I do not want levedopa's side effect of diskynesia. Thank you for your articles.

I started in late 2002 with severe headaches that I attributed to my stressful job plus attending night classes in IT. In 2004 severe spasms hit my feet and hands. The spasms were so bad I destroyed all my toenails on my left food and more often than not had to pull over while driving because they would hit during my evening commute. Getting out of my chair at the office became difficult as well as walking on the carpet because I kept catching my left foot. Going from carpet to tiled floor became an issue then as well and this made navigating around the office difficult if not outright dangerous for me.

As a Classically trained pianist, I noticed coordination problems. With periods of exaggerated motion causing odd slamming of notes unexpectedly and outright coordination problems between my hands as if I were two different people trying to play a duet! These symptoms came and went, and I attributed that to stress which can do a number on us in many ways.

During this time, I noticed nasty stiffness in my left shoulder and my bicep muscles became sore. There's a picture of me taken at a company meeting with my right hand massaging my left arm because it was sore. I also felt what I call internal vibrating for the first time as if I had been using an electric drill then stopped it. The right side of my face stiffened up and still today feels as though I have splashed egg whites on it with a bit of that now moving to my left side.

The fatigue increased severely, and I would physically crash. My manager noticed that I was taking Monday's off more than usual and questioned whether I was on something or drinking, both of which are not true. I explained that I'll go strong for a couple of days then come Wednesday, it felt like it was Friday, and I could barely make it through the rest of the week. I'd spend my weekends sleeping, barely getting outside to do anything because I was too drawn down to move. He also used to tell me to smile more often and to stop clenching my fist. My left hand was tight enough to bruise the palm with my fingernails. This also came and went, but the hand tended to tighten up while walking with the lack of arm swing on that side.

The bouts of sweating started as well. I would sweat so much that my glasses would steam up. This is still a problem for me today, and when it's cold out I shiver as if I have a fever and can't seem to get warm. An autonomic test done in 2012 showed this as well as BP issues during the tilt table test.

Plumbing issues started. I could go for days or longer only to be followed by the opposite. Urination became more frequent but has never caught me off guard. Lightheaded and dizzy spells weren't uncommon either. When my BP was checked, it was scarily low at 90/70 while standing! I would pass out easily even though I drank a lot of fluids - not coffee, water and juice, Gator-aid and similar drinks. My sense of smell didn't go away, but instead I had phantom smells. Mine were cat poop and roses. (What a combination!). Since I own a cat, I would spend time looking around for it, thinking there was a mess, but nothing was around.

During this time, I started with tremors in my hands especially after use and while resting. It was this that sent me to my doctor. My grandfather had Parkinson Disease and I noticed the similarity in the symptoms I was experiencing. He sent me to a local neurologist...

I had three visits with him. The initial visit lasted 12 minutes and in the 12 minutes he diagnosed Focal Dystonia (FD) because I played the piano for 1 hour per day. There was little interaction between us, and his tests were really brief. I asked some questions. He didn't answer and told me to come back. The next visit included more tests including some with another associate. The associate neurologist noticed both pyramidal as well as non-pyramidal symptoms, and the follow-up the same day was the same. His answer was come to my Botox clinic for treatment. I asked questions and he was sarcastic and scheduled another visit.

When I saw him again, I asked about PD. His answer was it's not because I'm not old enough! He kept insisting this was FD and I kept resisting and pushing the issue and eventually he gave me some C/L 25/100. A friend of mine, whose wife has PD, noticed my symptoms were similar and told me to push because this didn't look like FD. A doctor-friend of mine also said the same and that was the impetus to push the issue further.

This was now November 2005 and upon taking the first dose, I felt 100% better. My hand stopped clenching, the feet stopped cramping, neck relaxed, and the other symptoms stopped. He still insisted it was FD even though the C/L worked and the Mirapex he gave me was helping. After putting in a totally disconnected report to my primary care doctor, I had the chance to switch to another neurologist. Disconnected meaning he said all the symptoms went away and I was "normal". When I spoke with me primary care doctor, his face turned red then ash white!

The new neurologist, an MDS and research doctor associates with Tufts University, diagnosed me immediately. I continued to work until 2012 when my cognitive functions declined in addition to becoming more and more disorganized and suffering from balance issues. I'm retro-pulsive and going up and down stairs for me is sketchy and this is what got me in trouble due to a C-level admin witnessing me teeter at the top of some stairs. My young manager, 20 years younger than me, started harassing me and was going to fire me for not keeping up with the production. I ended up on disability instead at 51 years old and he ended up being fired.

In my "retirement", I stay busy. I did some travel while I could but that's out of the cards now due to the physical stress and fatigue. With my experience with PD, I did some writing for the Parkinson Creative Collective and contributed to the The NeuroWriters’ Guide to the Peripatetic Pursuit of Parkinson Disease, an anthology of experiences of life with PD.

Today, I still play the piano and practice daily for about an hour. This is both a physical workout as well as a mental one. This helps me cognitively as well as physically because it forces me to think about my movements of not only my hands, but also my wrists, fingers, arms and posture. Using the Alexander Technique, I aim for relaxed playing, which forces me to focus on posture and arm weight and involve muscle-group stretching in addition to the posture. These exercises are similar to those I had when I went for some PT a few years ago for balance and freezing.

As much as I try to keep going, I now see more and more cognitive issues occurring. I have twice put a metal pot with eggs into the microwave! What stopped me was I noticed at the last second what I was doing. I've also had issues while driving and ended up on the wrong side of the road a couple of times. This was scarily dangerous, and I question my driving skills more and more and limit my driving to the shopping plaza 1 mile from my house or to my nearby doctors. Fatigue also plays a big part on me now. I need to nap now at least 1 hour or 2 per day. There's no escape and I will just close my eyes.

As discouraging as this is, I keep going by looking forward to the good things I enjoy and in particular keep my sense of humor. Without a sense of humor, we have nothing.