The Plurality of Parkinson’s

I am suspicious of autoimmune diseases with their curiously wide array of symptoms amongst various individuals. Perhaps this umbrella term is masking multiple diagnoses and processes that science hasn’t clarified. How can one disease do so many different things within the body? I was asked to compare a dad and daughters symptoms to discuss the differing disease expressions for two people given the same diagnosis: Parkinson’s.

When Tom (Dad) was diagnosed at 81, he’d always been soft-spoken. As his neck and throat muscles weakened, he became quieter and since these muscles also assist with eating, food became a potential aspiration hazard. His handwriting changed to a shaky version of his already microscopic scrawl. Freezing episodes occurred when walking from one surface type to another (e.g.: carpet to tile) leading to rapid blood pressure drops (known as Autonomic Dysfunction) and fainting. We’d walk in a row: the maroon wheeled walker, Tom plodding stiffly behind and the Plan B wheelchair driven by one of us, ready to grab him as necessary. He never experienced associated pain, nor oddly much of a visible tremor. This is one version of Parkinson’s disease.

At 51, his daughter Joyce’s symptoms began with right foot cramping after a twisting stretch on a colleague’s inversion table, caused a bolt of shooting pain to zip down from right low back to right foot. In the last nine years, involvement has extended to visible cramping and spasticity of her right calf with extension into the entire right side along with a generalized binding of the entire body, especially the torso. At random intervals, the right foot angles outwards and the left big toe stiffly tenses upwards towards the ceiling. Otherwise, she walks and turns smoothly without any of the classic Parkinson’s rigidity or stuttering movements.

These symptoms have built to multi-daily debilitating pain attacks lasting 15 to 45 minutes until the current medication dose can “get on board.” The varieties of discomfort include: a generalized tightening or what she describes as an ace bandage or blood pressure cuff over areas of her body to pulling, ripping, tearing, shredding and burning pain. There have been times wants to amputate her leg off. In the past year, she has been tracking her symptoms every two hours to gather information for her doctors about medication effectiveness and symptom control.

My spouse and I once attended a local conference geared for Parkinson’s patients and family. In the crowd were young folks in wheelchairs, those dealing with rigidity, tremor, spasticity and blunt facial expressions or dementia and all from just one supposed disease. Could a mix of genetics, diverse environmental inputs like chemical exposures, lifestyle factors and gut microbiota health working in combinations create an end result of multiple disease states with false similarities?

I look forward to receiving your feedback.

Dr. Valerie

You Drive Me Crazy

You get in, close the door and are in your own little world. Except… you’re not. You’re actually in a sea of others and while getting into that little metal box might make you feel like you’ve just put on headphones and hid under the covers, you’re still right there, on the asphalt, driving.

A friend of mine told me his brother said he “could go through red lights because his reflexes were that good.” I pictured him running through lights thinking: well that’s great for you, but nobody’s else’s (reflexes) are that good. I imagined cars swerving in confusion and chaos and upheaval following him wherever he went.

Sometimes, we take shortcuts, take chances and become naively cavalier. We can be disconnected. Our minds driving the vehicle don’t get how bad our bodies in the vehicle will feel after the smash. It reminds me of the movie, Gone with the Wind, where people were excitedly yelling (to paraphrase) something like “yeah, we’re going to war!” when they had no embodied understanding of the ramifications of that statement.

Life can seem predictable at times and we can be fooled into thinking that current events will continue unchanged. Do you drive like playing checkers with an unconscious expectation that each car will remain in perfect formation as you jump between spaces? We’re prone to distraction (the weekend was so nice, blah, blah, blah………sh_t, I’m gonna miss my exit!!), impulsivity (I need to exit now!!) and ultimatum thinking (I need to get off at this exit and this exit only!!)

By the way, my spouse and I have labels for what we see on the road. This is not to say that I’m mindfully aware at all times, but naming them has helped us keep our cool when certain behaviors might scare the sh_t out of us. If it helps, steal it. The key is picking verbiage that lightens things up. If a comment just makes you more *irritated or pissed off; that’s a dud.

We started with D.W.M. or “driving while mean,” but it didn’t meet *criteria. The acronym search continued. Our newest iterations involve ants, since they are always on the move and tend to make people wiggle if their in your…. undergarments. The first level is Ants in Pants or A.I.P. We see a vehicle frequently changing lanes, like they’re jumpy and can’t get settled. The second level is Fire Ants in Pants or F.I.A.P, which is verbally clunky, but entails lane jumping accompanied by speed. I used to semi-yell them out. That was fun, but well…..not safe. Damn.

I’ve also become curious about my own driving in the hopes of making it less stressful. I’ve taken alternate routes, even if longer, turned off distractions on stress streets and made those spaces between myself and others (when possible). Making space might involve speeding up, but is equally likely to mean anticipating/slowing down, which is typically easier on myself and the vehicle.

To help my body relax, I use a simple technique that Oren Jay Sofer offers in his book “Say What You Mean.” My back is calmly upright while the stomach, butt and legs get “heavy” and drop into the seat and I connect with the pressure of butt against seat. I breathe slowly and deeply. This is one of those ideas where your mind might think “stupid” and body might say “heyyy, not bad.”

In the end, one of the reasons I write is the same: to prevent pain. It’s frustrating to deal with a body that doesn’t move as smoothly and easily as before. I would love for you not to experience that. While that other driver might be “crazy,” you can decide where and how you want to live within that sphere of influence.

Me and Mx Cig.

My job causes me pain. Here’s what it’s like on my end to see suffering on yours and feel I have little to offer. I understand we make our own choices. Even Dr. Elisabeth Kubler Ross, who wrote about facing death, discussed her decision to smoke. But…. wouldn’t it be great to get what we need without using things that weaken us?

Before I go on, check out this one minute video link below of David Goerlitz, former Winston model. I met Dave after his presentation in Maine the summer of my first year of medical school. He is no longer with us, but his bravery and tell it like it is attitude is powerful. His has videos online and was featured in two movies: A Billion Lives (released 2016) and The David Goerlitz Story (released 2019).

Dave Goerlitz Video (It’s quiet and rumbly, so increase the volume in advance): https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=https://www.youtube.com/watch%3Fv%3DtJrCSlbkNkw&ved=2ahUKEwjJ3e_h1f6EAxUakIkEHQIlAm8QtwJ6BAgHEAI&usg=AOvVaw1P1QpO_mqWctRq28cWus9Q

Smoking may not immediately kill, but can make you suffer for years. Patients tell me they didn’t realize how often they hacked up loogies (not sexy), smelled of old tobacco or how fatigued they were until after stopping. I firmly believe that anyone can get addicted to any drug and am grateful to my brother for unintentionally discouraging me from cigarettes and in my case, by it’s association, all drugs.

One California summer, my older brother and I walked the short distance from our home to the neighborhood park. We were ages 11 and 9. After lighting the cigarette he’d brought and began coughing, I panicked. I thought he might die or we’d get into ” big trouble.” I remember being curious but afraid of the bad, bad, bad cigarette we’d been warned about in school. Neither of us picked up one again. I sometimes feel like the nutty guy in horror movies, glancing sideways and warning: I wouldn’t go in there if I were you… I wish I could summarize everything I’ve seen into one indelible story that would relay the fullness of this suffering. But I can’t so I’ll leave you with one.

30 years ago, I met a woman looking older than her years sitting stiffly upright in a hospital bed with a look of severe distress on her face at the meal set before her. She’d undergone surgery to remove a portion of her diseased lungs from years of tobacco use and could barely breath. She looked down and kept quietly repeating: “this is too much.” I offered to move a portion of food off her tray, she nodded her assent then visibly relaxed. Everything was hard for her: breathing, holding that breath for the tiny fraction she needed to swallow or trying to rest. There was no ease in her life.

Human bodies tell a story and there is beauty in their journeys. But there also can be heartache within that beauty. Over the years, I’ve been struck by the facial changes I’ve seen in long-time smokers. Some remind me of those whose hands became discolored working hard with grease and machines all their lives. My patients’ faces remind me of the beauty that can exist within the pain.

The Road Home

The long days stretch behind those heavy eyes

The creased cheeks are thickened and full with

lines of black, dotted freckles marching in rows

The years of scrubbing can’t clean this skin

The marks are like work hands stained from

years of labor that are finally released to rest

It is a long way to the road home

It is a long way to the road home.

Let there be some ease even in times of pain,

Dr. Valerie

Getting the MOST out of the initial SPECIALIST visit

You might be wondering how can I get the most use of my specialist’s time? How do I convey the entirety of my journey and it’s impact? How do I quickly get this doctor up-to-date with a complicated history, my wishes front and center, while helping that same all too human doctor cross-reference the copious medical files in their brain? The short answer: you prepare. You’re the expert as to how you feel inside your body and prep work can save so much time and frustration. This is how I got ready for my father-in-law’s first visit with the movement specialists before his eventual diagnosis of Parkinson’s with Autonomic Dysfunction.

Gathering the data. This part is a bit of a mess, because it involves throwing all your observations and data into one metaphorical pile. Get a bunch of scratch paper and write, speak into a recording device or type down your observations and conclusions (may be listed as the “Impression”) of any results (radiology, procedures) you have available. I found it easier to write whatever came to mind in one sitting then return to it in a couple days. If comfortable, your spouse, family members or friends can add their observations.

Compiling the data. Roughly organize the information into chronological order or a form that’s easy for the doctor to quickly review. (Make a copy for the doctor for reference). Next, write a paragraph that creates a picture of how you appear (physically and emotionally) trying to get through your day living with these symptoms. Your doctor only sees you for that moment in the exam room while the ongoing reality can be much different. it might help to think of how you’d write scenes in a movie with you as the main character. What would this person look like during different parts of the day?

Caveat: give an accurate range of experiences and avoid describing only your worst or best day. Overstating symptoms can lead to too much treatment which sometimes can be worse than too little. You want to be heard, but don’t want to either minimize or inflate the problem.

Summarize your treatment goals. Dr. Terry Wahls, an internal medicine doctor with expertise in research and and her own personal journey with Progressive Multiple Sclerosis, recommends patients find a physical goal as their aim. (E.G.: I want to feel better, so I can: play with my kids or grandkids, travel to Italy or work in the garden, etc). It’s better to have a specific activity you’d like to do, rather than the vague, I’d like to have more energy. You’d like to have more energy or less pain in order to do what?

___________________________________________________________

For more detailed help getting started, here are some questions to consider:

SYMPTOMS. (For each symptom or group of symptoms), indicate:

  1. When did the symptoms roughly start? (Month? Year?)
  2. Was the symptom onset associated with anything(Injury? Chemical exposure? )
  3. Where are the symptoms located and does this move?
  4. How much do the symptoms interfere with your daily activities? You can also ask what tasks are you finding it hard to do because of the symptoms?
  5. How much time or percentage of your day, are your symptoms in the Severe, Moderate or Mild Ranges? (Please clarify what “severe, moderate and mild” mean in your view. Mild could mean you can ignore the symptoms, moderate could mean it’s noticeable and delays tasks and severe could mean you are lying in bed or crying).
  6. Is there anything makes the symptoms better or worse?
  7. Is there anyone else in the family that experienced similar symptoms?
  8. Have the symptoms changed over time and in what way(s). How quickly did they change?
  9. How do your symptoms feel in your body? Put down anything you’ve noticed, even if the descriptions sound odd to you.
  10. Any other observations.

TREATMENTS.

  1. Over-the-Counter Medications. Try to be as accurate as possible when describing how many pills you use and how often. The words “as needed” can equally describe someone taking 2 Ibuprofen tablets once a month or 10 tablets daily. If you have intermittent flares, an individual might give their average use as taking 8 tablets a day for 3 days once a month, for example.
  2. Supplements (how many pills, etc do you take and how often?)
  3. Prescription Medications (including inhalers, refrigerated medications, nasal sprays, tinctures and topical agents like creams).
  4. Medical Procedures and Surgeries
  5. Physical and/or Occupational therapies
  6. Complementary Treatments: EG: Acupuncture, Reiki, Massage.
  7. Lifestyle changes: diet, sleep, relaxation, fitness, meaningful connections and work life).
  8. Any other treatments

Here is wishing you a successful visit with your specialist where you feel your concerns and priorities are heard.

Dr. Valerie

MIRACLE TREATMENTS

            Advertisers shout and dance about how easy your life will be with one little pill.  Supplements claim to make the pounds melt off or make you more of a man with a “free” trial bottle and inflated shipping and handling fees.    My suspicious mind asks that if a pill actually worked that effectively, safely and quickly, wouldn’t there be more proof out there?  Also, wouldn’t the pharmaceutical companies with all their means have jumped on it already? Years later, I’ll read independent, scientific studies showing no measurable affect with those miracle treatments.

            I also suspected that a typical TV ad was not cheap, but was unsure of the numbers.  A cursory online perusal estimations for the medium-sized market which I live (Cleveland metro area population 1.2 million), an ad charge runs between $5-$45 CPM (cost per thousand viewers).  The price is determined by time slot and frequency of ad runs.  This does not include the cost to hire actors, crew, equipment and space to film.  So, if something costs a large sum to produce, red flags go up for me when I see a company “giving supplements away.” 

Of course, all is not what it seems in the world of advertising.  We may already know that in one part of our minds, but may be unaware of how egregious the missteps may be.  I remember reading the account of an athlete who discovered his personal before & after online photos being misused by a company trying to sell pills promising similar results in 30 days.  In actuality, he went from scrawny to buff in……4 years!  This change, of course, took diet and steady weight training.  Always question the source.  Thankfully, there are real people, who have successfully changed their bodies, who can tell you how to go about it safely. 

             I’m amused by vintage ads:  “Guinness beer for Strength”, Celluloid (clothing) Starch to “protect against contagious diseases” and “Dr. Batty’s Asthma Cigarettes” which also allegedly handled hay fever and foul breath.  In these old ads, we can more easily detect the deception.  When the ad content is current and relatable, our brains may conclude that the ad must have some truth in it or else it wouldn’t be in the newspaper or TV, etc.  I can’t imagine the length of time and expertise required if every magazine and media venue were required to sufficiently research each ad for proof of medical accuracy, effectiveness and safety.  By watching ads of a bygone era, perhaps it will help us distance us from the pull of the promise today.  Hey, do you think that might also work for politics?

In health,

Dr. Valerie