It’s Time to Redefine Early Stage Parkinson’s

It’s Time to Redefine Early Stage Parkinson’s
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The symbiotic conductor/exercise training, which centers on a mental construct for shifting perspective that I’ve described in previous columns, helps me to live better with Parkinson’s. Putting it in place as an early intervention (unknowingly on my part) was a crucial piece of this successful outcome. If we are to explore the utility of conductor/exercise training for other people with Parkinson’s, then we need to know what early Parkinson’s looks like.

There is quite a buzz in scientific literature about prodromal (“early”) features of Parkinson’s. The disease is currently clinically defined by a set of cardinal motor features centered on the presence of bradykinesia and at least one additional motor symptom of tremor, rigidity, or postural instability.

However, converging evidence from clinical, neuropathological, and imaging research suggests there may be initiation of Parkinson’s-specific pathology prior to appearance of these classical motor signs. This latent phase of neurodegeneration in Parkinson’s is relevant in relation to the development of disease-modifying or neuroprotective therapies, which would require intervention at the earliest stages of disease.

Therefore, a key challenge in Parkinson’s research is to identify and validate markers for the preclinical and prodromal stages of the illness. In an article published in the Journal of Parkinson’s Disease, Philipp Mahlknecht and his co-authors found that many of these prodromal symptoms may precede the classic Parkinson’s motor symptoms by as many as 10 to 20 years.

Following is a brief list of possible new early stage criteria.

Non-motor symptoms:

  • Reduced ability to smell
  • Constipation
  • Depression/anxiety
  • Idiopathic REM sleep behavior
  • Executive function in brain

Motor symptoms:

  • Reduced arm swing
  • Changes in walking patterns (foot drag)
  • Stiffness
  • Tremor
  • Slowed movements (bradykinesia)

I identified foot drag as one of my early symptoms in a previous column. I have a rigid variation of Parkinson’s and only a mild tremor. A study of early, nonmedicated Parkinson’s patients published in the journal Movement Disorders by A Winogrodzka et al. states, “When the confounding influence of rigidity is taken into account, no significant direct relationship between dopaminergic degeneration and the degree of tremor could be found.” If you’re looking for a tremor, I don’t demonstrate it consistently.

In addition to these symptoms, the new early stage might demonstrate episodic motor movement problems. Who hasn’t done the finger-to-nose or repetitive finger-tapping test in the neurology office? In an article published in The American Journal of Occupational Therapy, authors Jennifer C. Uzochukwu and Elizabeth L. Stegemöller write:

“Changes in movement amplitude and movement rate may influence fine-motor dexterity tasks differently. Thus, it is important to consider the quantitative assessment of both movement rate and movement amplitude because they may indicate differential clinical applications in the treatment of people with PD.”

Ask me to repeat finger-to-nose and I will only miss occasionally. I more often knock over the water cup or bump into my partner while navigating through a narrow open space because of a problem with movement amplitude regulation.

Pain has also been identified in the early stage and been a topic of my columns. As reported in Parkinson’s News Today in 2018, researchers at the Bangur Institute of Neurosciences in India conducted a combined hospital and community-based study and identified several types of pain more prevalent in people with early Parkinson’s, such as nocturnal leg cramps and frozen shoulder.

“This is an indirect evidence that pain can be an important early clinical marker of [Parkinson’s],” the study authors wrote.

Scientists are developing a better understanding of Parkinson’s, and a new picture of the early stage of the disease is emerging, but it is still a fledgling science, and there is a good chance my description of early stage Parkinson’s is subject to change. The current description of a new early stage is not the final description.

As we expand our understanding of Parkinson’s, science will redefine the disease. The medical community predicts that improved research and recognition of prodromal symptoms will dramatically change the face of Parkinson’s. A 2018 study from the Journal of Parkinson’s Disease states:

“By 2040, it is hoped that prodromal criteria will be incorporated into active neuroprotective treatment programs, allowing a program of population-based screening followed by early treatment and ultimately the prevention of clinical PD from ever becoming manifest.”

You can help my search for early stage criteria. Comment below describing the first motor and non-motor symptoms you experienced with the disease. Your experiences help inspire my writing and research into this important topic.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Dr. C is the familiar pseudonym for readers who visit “Possibilities with Parkinson’s.” The love of writing has spanned his careers as a research theoretician, brain rehabilitation clinician, and college professor. Dr. C was first diagnosed with early-stage Parkinson’s disease in 2014. His interest in how Parkinson’s disease can manifest itself in other body and mind symptoms has become a focused area for his research and writing. His goal is to share current medical research on how Parkinson’s can be diagnosed in early stages, and to help other early-stage Parkinson’s patients manage their disease process in a holistic healing approach.
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Dr. C is the familiar pseudonym for readers who visit “Possibilities with Parkinson’s.” The love of writing has spanned his careers as a research theoretician, brain rehabilitation clinician, and college professor. Dr. C was first diagnosed with early-stage Parkinson’s disease in 2014. His interest in how Parkinson’s disease can manifest itself in other body and mind symptoms has become a focused area for his research and writing. His goal is to share current medical research on how Parkinson’s can be diagnosed in early stages, and to help other early-stage Parkinson’s patients manage their disease process in a holistic healing approach.
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43 comments

  1. Christine says:

    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.

    • Dr. C says:

      Hi Christine ~ Have you had additional symptoms since your diagnosis? Did you have any other early symptoms that might have led the doctors to determine PD? I always hold the door open for possibilities with Parkinson’s. I don’t see it as an end-of-life as we know it, but rather a reframing to a new way of living. Thanks for sharing your comment with the PD community.
      Dr. C.

  2. Clive Varejes says:

    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.

    • Dr. C says:

      Hi Clive ~ You give a really good description of many symptoms I too experience. One of the key problems you identify is that of exaggerated emotions. Several of my columns have addressed the problems of exaggerated emotions. I hope you get the chance to read about the “conductor” that I have described that I think is useful in managing these exaggerated emotions. It sounds like you are handling everything quite well. It can overpower anyone. I appreciate your forthright expression that the disease does not manage you.
      Dr. C.

  3. William Palmer says:

    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.

    • Dr. C says:

      Hi William ~ Thanks for sharing your information. Other readers have mentioned problems with ambulating and use the same term “slapping them [feet] on the floor.” I think this may be a significant issue. I also have difficulty with getting my body to move to the appropriate destination. This can create a “slapping” effect which I think is a motor amplitude problem connected to PD.
      Dr. C.

  4. Joe A says:

    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

    • Dr. C says:

      Hi Joe ~ Thanks for sharing your information. I think the exercise is very important, especially the core body work! Since your diagnosis have you started on any PD medication?
      Dr. C.

  5. Larry Grossman says:

    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.

    • Dr. C says:

      Hi Larry ~ Thanks for sharing your information. You bring up an important point that stress will tend to increase PD symptoms. Sounds like you are exercising which should help in many aspects of your life.
      Dr. C.

  6. Tim says:

    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.

    • Dr. C says:

      Hi Tim ~ Thank you very much for the diagnoses. Can you provide some additional information — dates and your age at the time of these symptoms? Also, was PD clinically diagnosed (by provider examination) or by a test?
      Thank you for sharing your information.
      Dr. C.

  7. Myra Ayre says:

    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.

    • Dr. C says:

      Hi Myra ~ Your comment is exactly what I was inviting from the community. You seem to be a good medical historian on your symptoms. Have you been formally diagnosed with PD and what tests did your providers administered?
      I appreciate your taking the time to share your information.
      Dr. C.

  8. 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 says:

      Hi Paulette ~ Thanks for your comment. The exercise program sounds like a good start. You don’t mention having any symptoms. I would be interested to know if you have any, particularly given your strong family history.
      Thanks for checking in,
      Dr. C.

  9. Rob Stehlin says:

    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.

    • Dr. C says:

      Hi Rob ~ Thanks for the post. I’m sure that people will find it interesting. You can send an email to me through http://www.DrC.life. I agree with the health system needing to treat the patient holistically. PD is such an overwhelming and complicated process that we can all contribute to our understanding of the disease.
      Dr. C.

  10. Ann marie Brick says:

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

    • Dr. C says:

      Hi Ann ~ Is that your only early symptom? Did the DatScan confirm the diagnosis? I would like to hear more about your case.
      Dr. C.

      • Sharon Comstock says:

        Hi Dr C. I am 55 and first was having problems with walking and leg pains during after walking about 10 to 12 years before being dx as probably and then likely PD in 2018. Early in my life In my late 20s I had GAD and major depression. Was treated with prozac which then 8 years later (mid 30s) the dose of prozac was doubled and caused a manic episode that lasted about a week with no sleep and then manifested into me thinking I was Christ. I had to hospitalized and given a B52 shot in the hip (Benadryl 50mg, Haloperidol 5 mg, Lorazepam 2 mg) to bring me down. Six years later I had a bad fall and bounced my head on the parking lot. 4 years later 2013 I was having double vision, vertigo, and shaking field of vision. March 2017 had a twitch in my right arm And was waking up gasping in the middle of the night. August 14th 2014 woke up feeling awful with internal tremors and very high blood pressure. Went to ER had EKG and was told I had anxiety. I did not agree. I was later put on beta blocker to help with bp and anxiety. The I started getting horrible shooting pain in my head at night so bad that I couldn’t lay down. After the shooting pain stopped it would be a crushing headache from the top of my head. I describe it like wearing a party hat. I few weeks later I had vitreous detachment in my right eye. I wasn’t until 6 months later later that I saw a neurology NP. Which was a rude woman. Who said to me oh it’s probably Parkinson’s and There is no cure. we’re not going to treat because The treatment is worse than what you have going on. Then she brings in a doctor and he said have you ever heard of Parkinson’s disease does it run in your family? I was shocked and in total denial. Was sent to another neurologist that told me it was SWEDD and to look it up on the Internet. He said that I was normal with a tremor. I asked for a referral to MDS he said that would be a second opinion and I am your second opinion. The next appointment I had with him I told him what he said to me and he denied ever saying it but he did give me a referral to a movement disorder specialist. At the movement disorder specialist examination was extensive I had a hard time walking and I had no arm swing on the right side. I had a great deal of pain. The doctor told me it’s likely Parkinson’s go get a hip x-ray because there’s no pain in Parkinson’s The doctor told me it’s likely Parkinson’s go get a hip x-ray because there’s no pain in Parkinson’s. I had the hip x-ray showed nothing wrong with my hip so much for that. I tried asking the movement specialist questions about my headaches be related to Parkinson’s she told me she was the clinical neurologist and then I would have to go to a research neurologist for the answers I tried asking the movement specialist questions about my headaches being related to Parkinson’s she told me she was a clinical neurologist and then I would have to go to a research neurologist for the answers. She did put me on Carbidopa levodopa 50/200 ER. But I did not feel any different that is until a year later stopped taking it to be in a research study at Northwestern university. I had to have a DaTscan to show dopamine depletion to be in the study. I am just about done with the study and looking forward to being treated with drugs that will help me. Northwestern has asked me to be in the PPMI Study so I definitely have a Parkinsonism. The symptoms that I have now that are most bothersome are tremors on the right side of the body, Rigidity dystonia in my toes my hand shoulder And just about every muscle on my right side. PT and exercises have helped greatly. Sorry this is so long but no one should suffer so long before being diagnosed. I am now able to better cope with what I have going on.

        • Dr. C says:

          Hi Sharon ~ You describe the length of time to get treatment very eloquently. It is the purpose of my research on PD and early-stage symptoms to help people understand that the diagnosis may present in a number of ways, not always recognized by providers and treatment delay occurs. It is a frustrating theme that I read throughout many comments on my columns that patients — you and I — are seeking answers. I hope that you can read some of the other columns I’ve written that touch on pain in Parkinsons, lack of pronounced tremors in early stages, and the dystonia and foot drag. Thank you for sharing your experiences… I hope the Northwestern study will provide some good information for you.
          Dr. C.

  11. 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.

    • Dr. C says:

      Hi Karla ~ Thank you for your comments. The abnormality you describe in both the odor awareness and the foot drag seem to correlate with the research that is out there about early stage PD.
      Thank you for contributing your experience.
      Dr. C.

  12. Alfern Firmin says:

    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.

    • Dr. C says:

      Hi Alfern ~ I am not a medical doctor so I can’t diagnose. The best course of action would be to see a neurologist. They can work with you to manage both of your conditions.
      Wishing you the best,
      Dr. C.

  13. Steve M says:

    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.

    • Dr. C says:

      Hi Steve ~ I really like your candid assessment. A couple of things jump out at me in your comment: You mention the cognitive testing. I had a neuropsychiatric evaluation as part of the VA service-connected assessment and it showed executive function concerns that the neuropsychiatrist said were clearly Parkinson’s. So it happens. It looks to me as if you are aware of subtle changes in your own thought processes. This meta-cognitive ability can be quite helpful when dealing with PD. I try to keep myself as mentally engaged as possible to strengthen the problem-solving and planning aspects of that part of the brain. I use a special form of cognitive training that I call “conductor exercise training” which I have written about in other columns. My case is quite similar to yours being in highly cognitive professional domains and retiring because I didn’t feel I was living up to my standard of performance. And, I too have service-connected Agent Orange exposure (Semper Fi!). Life is what we make of it and I think you are doing a great job tackling it head-on (no pun intended).
      Thanks for reading my columns and hope you check in again on BioNews.
      Dr. C.

  14. Jan Spary says:

    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.

    • Dr. C says:

      Hi Jan ~ Thanks for your thorough description of the problems of not having the science behind a good understanding of early diagnosis and treatment of PD. Many other PD patients have expressed similar paths to get to the diagnosis. I went through multiple diagnoses over the course of many years prior to getting the PD diagnosis. It is a frustrating experience for both me and Mrs. Dr. C. It sounds like you are getting some treatment now and can move forward to manage the symptoms.
      Thank you for reading my columns and I hope that what I share on various PD “challenges” will help you navigate this disease.
      Dr. C.

  15. Jeff Hill says:

    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.

    • Dr. C says:

      Hi Jeff ~ Thank you for sharing your insights and symptoms. I commend you heartily on finding alternative ways to exercise to keep up the physical management of PD. It is such a challenge for so many PD patients who have never had exercise in their lives. My days of building stone walls and massive terra-forming gardening are behind me now but I still get out to create brick paths and smaller garden enclosures. I can’t stress strongly enough that I believe mindful exercise continues to keep the worse of PD from getting ahead of me. Having the puppy as a companion to encourage you is wonderful. Among our accomplishments this year were getting the new gardens at new home in before the snow!
      Thanks for reading my columns and checking in with BioNews.
      Dr. C.

  16. Jo S. says:

    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.

    • Dr. C says:

      Hi Jo ~ Thanks for your comments. You mention the dysregulation of various “automatic” body functions, like temperature regulation. The column I wrote on the second dopamine center (the insular cortex) talks about the role that this center plays in regulating these functions. Exactly how PD causes the breakdown of these functions is still not fully understood. I hope to share more information as I find it. Your comment about having symptoms preceding diagnosis by 10 to 20 years is not unusual — I’m hearing from more readers that they have experienced the same thing.
      Thanks for reading my column and for checking in with BioNews. Comments from readers like yourself encourage me to continue to reach out.
      Dr. C.

  17. Darla Stokes says:

    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.

    • Dr. C says:

      Hi Darla ~ Thank you very much for your excellent description. It helps my research and I see other readers with the same concerns. My wife often asks me if I’m “OK” because I tend, like your husband, to wear a “mad” or sometimes “expression-less” face. The foot drag you mention is also something I’ve had for years. Hope you can read my column “Oh What a Drag It Is”!
      I appreciate your comments and hope you continue to check in on my columns and the BioNews website.
      Dr. C.

  18. Lisa Vanjoske says:

    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.

  19. Laura Johnson says:

    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.

    • Dr. C says:

      Hi Laura ~ Your comments are very appreciated — and it is a recurring theme that I read that people wish they could have been diagnosed earlier. This has been my main focus in researching and writing about Parkinson’s. I think this is the most important thing we can do to help people with the disease. Seek early intervention and find ways to work through the symptoms. Exercising, in my mind, is absolutely key — keep up the good work!
      Dr. C.

  20. Paul Joppa says:

    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.

    • Dr. C says:

      Hi Paul ~ You give a nice clear description of the symptoms. Providing the time frames in relationship to the diagnosis really support the idea of prodromal PD and early stage PD. I have followed very much the same path as you — including the foot drag which has broken three toes in my time. It sounds like you have a good handle on the progression and are dealing with the symptoms as they occur. It is a blessing to be functional despite the odds against us and I pray that you continue along the slow path….
      Dr. C.

  21. Judi says:

    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.

    • Dr. C says:

      Hi Judi ~ You have given a really excellent description of the many facets of Parkinson’s that are all too often overlooked or attributed to “stress” as you mention. I see a lot of my own symptoms in what you have so clearly stated. I would like to suggest that you read my articles through the BioNews website, “Possibilities with Parkinson’s”. You might find that the suggestions will help. I’m still learning how to deal with everything as it progresses. I hope that my research and writing will help you understand and make things a little easier. The column to be published on November 20th may also be helpful. There will still be bad days… but we face those one at a time.
      Many thanks for reading my column and checking in with BioNews for more information.
      Dr. C.

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