What I'd Tell Someone Who's Loved One Is Diagnosed with Parkinson's

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Parkinson's is a debilitating disease of the nerves in the central brain (pituitary gland in particular) where they degenerate slowly, causing numerous problems with movement, balance, stiffness of limbs and the trunk, and unstable posture.  My father had a rare form of Parkinson's called Progressive Supranuclear Palsy (PSP) otherwise known as Steele-Richardson-Olszewski syndrome.  It's like Parkinson's but with worse dementia and cognitive decline than is normally found in Parkinson's.  There is no known cure for either disease.  The Michael J. Fox Foundation is one of the most prominent charities doing work in this field and I've donated to them over the years.  Well isn't all that really uplifting?  Not so much. However, I've had several people in my life have loved ones or others close to them be diagnosed with Parkinson's and even PSP recently and so what better time for a post like this?  I want to share what I know and my lessons learned in retrospect in the hopes that it can better prepare families and friends for their loved ones transition through the disease.

My father was Bill Prestin, born in Minnesota in 1947, a baby boomer through and through being born right after the war.  His father fought in World War II in the Army Corps of Engineers in the Pacific Theatre. Both were great men in their own rights and had very unique life experiences.  However, from what research suggests now, their PSP and/or Parkinson's related genes are in all likelihood heritable down the family line but more than likely is that they are triggered by exposure to various pesticides.  My grandfather, while we're not certain, was likely exposed to some gnarly stuff in the jungles and islands in the Pacific Theatre, especially doing the unique work of the Army Corps of Engineers like clearing forests, making roads and infrastructure to support the war efforts.  Well into the time of my dads disease I learned that he sprayed trees with who knows what after high school for 2-3 summers, often coming home totally soaked in whatever he was spraying.  They both suffered through their diseases and died in their early 60's due to complications and symptoms associated with the diseases.  My dad had what is known as "early onset" PSP and started sometime in the late 40's and progressively got worse after that.  Knowing all that, I've spent a lot of time and attention doing my best to learn from their experiences as well as paying attention to new science being done to identify ways to avoid the disease altogether or deal with the progression of it if it were to come to me.

Here are my lessons learned.  They are unique to me and framed in ways that make sense and are meaningful for me.  They can be altered and reframed easily to fit for anyone else and I don't mean to imply I know everyone's unique experiences with diseases like these.  This post is pretty raw and unfiltered so prepare accordingly.  There is much more to share and talk about if anyone is interested.  As with other posts I've made in a similar vein, my caveat with all of this is I'm NOT a medical doctor nor do I play one on the internet.  These were my fathers, my, and my families experience along with other information I have learned over time.  Seek a variety of expert medical support for your unique circumstances! Please email me directly or comment in the comments below.

Things To Expect From Them and Their Disease

  1. Diagnosis Time - when someone is diagnosed with his kind of disease or any terminal illness for that matter, it is understandably traumatic in so many ways and for them, ways in which you'll never understand unless you contract something yourself.  Even then, their experience will have commonalities with others and plenty of uniqueness of it's own.  This time is fraught with uncertainty, fear, anxiety, sometimes desperation.  A deep sense of existential crisis can emerge at this time, whether the disease can be treated for decades or has only 6 months to run it's course.  This information seems essentially irrelevant to our brains capacity to comprehend that our time is limited.  While it's always been limited, having this information on the WHAT and HOW of our eventual deaths and a general timeline on WHEN brings death to ones doorstep, so to speak.  From a process oriented perspective, the time between diagnosis, gathering all pertinent information, and starting treatments don't always line up.  The time delays can be EXCRUCIATING.  The critical NEED to do SOMETHING is strong and frustrations and emotional outbursts can run high.  This is a time to employ whatever self-care and processing techniques you know or can come to know rapidly.  It is a time to be together, for retrospection, and new beginnings.  If someone is up for it (other than the diagnosed) have them do the information and research, find the experts, get the best books on the subjects, reach out to your networks for first hand experiences.  Find the best treatment facilities in your REGION (yes REGION) and make plans to visit them.  Start a journal at this time for yourself and also have the person diagnosed do one as well.  Capture your thoughts, feelings, anxieties, and more on paper.  That alone is powerful in times like these but it can also be useful for sharing information with doctors and other experts.
  2. As The Disease Progresses - my fathers experience as well as others I've have seen or read about, seem to have some commonalities that are worth knowing about.
    1. For most people, this disease CAN be treated quite effectively for even decades.  Quality of life can be maintained and the rate of decline from the disease can be staved off with a variety of medical and other treatments.  Find out ALL your options, medical related and otherwise, and use them as a full regimen to ensure maximum Quality of Life for the longest period of time.  This can also take off some of the stress associated with waiting, wondering, and the helplessness that can come on.  Crafting a treatment approach with your Doctor's and other wellness providers will be empowering for the person afflicted as well as for their support network.
    2. The disease is a slow decline but with "cliffs" where dramatic changes and new levels of the disease appear.  The common symptoms of tremors (often worsened by the "shotgun" approach of medication like synthetic dopamine overloading the system), slowing, and stiffening can take big jumps in short periods of time.  This is quite frightening and frustrating so prepare for changes like this to come on.
    3. The disease will have secondary, long lasting ailments come with it.  Things like falling a breaking a bone (my dad fell and shattered his right shoulder), infections, and eventually involuntary muscle system decline (trouble swallowing, digestion issues, etc.) will come and cause their own trouble and hardship.  Be aware of them, handle them quickly and with full force, to stave off their longer term impacts to your loved ones health.
    4. Mental illnesses of varying kinds often accompany the disease.  This isn't necessarily unique to Parkinson's but there are some symptoms that are worsened by the impact to the brain from the disease.  Anxiety and depression are common.  There are a variety of treatments for these components of the disease so seek a variety of experts on how to approach them understanding the underlying illness is a major cause.  Basically, don't just treat the symptoms, work deeper than that.
  3. Approaching the End and Release from the Disease - sounds pretty morbid and it certainly is.  Parkinson's, as your doctors will likely explain, will typically in the end cause the involuntary muscle system to degrade to such a place where swallowing, digestion, and even breathing are extremely difficult or can even break down completely.  Complications with these body functions are often what cause the eventual passing of someone with Parkinson's. Because of this, it's not uncommon to have a Do Not Resuscitate component as a part of their medical care. I say "Release" here because that's truly how I felt for my father when he finally passed.  He had dealt with this disease for so long and had such a hard time with this last stage of his life that death was his only remaining release.  Some of my last words were "I Love You" and "Be Easy Dad, Be Easy" because it had been SO hard for him for so long.  In my later years I've found amazing resources in places like Zen Hospice Project, as I've mentioned in other posts.  Find them or a resource similar near you and these care givers will make this experience VASTLY more meaningful and smooth than my fathers was. This is one kind of resource I wish I had known about or had been offered during my fathers passing.

Things For You To Keep In Mind

  1. This is THEIR Disease - while those around someone stricken with these diseases are certainly and dramatically effected by it, keeping the mindset that they are and will be impacted in ways you can't fathom, will help you stay mindful of the difference between what THEY are experiencing and what you're feeling or projecting onto them about how you think they're feeling.  In other words, don't make your discomfort and emotional pain about their ailment distract you from loving them deeply and richly and acting accordingly.   My version of this was "powering through" the hard times of getting my dad out of his nursing home and bringing him home for a while where I basically acted as a nurse of sorts in that time.  Many situations I never would have thought would ever happen between a father and his early 20's son.  For me, my form of compassion was being present and focused on his needs while ensuring he could enjoy his time with me and the family and being at home for a bit.  Depending on how close you are to the person and your level of care providing, you'll need to go into the experience with a proper mindset as well as being constantly adaptive as things change.
  2. You're Emotional Experiences Will Expand Vastly - basically, it'll be a rollercoaster, so prepare with way's and means to both be in the moment and also post process as much as you can.  I talk a lot about self-care and meditation and those are powerful methods to stabilize yourself.  However, at the time, my methods for dealing with the emotions were wailing for hours on a punching bag in my college houses garage and even having "crying it out" sessions as needed.  Yes, plenty of crying it out.  You HAVE To find ways to process, whatever level of processing you need.  I also had a great friend who lost his father early in life and we had deeply enriching conversations over several years, in the philosophical and highly cognitive vein, and that helped a great deal as well.  Pay attention to your needs as well as the needs of the person stricken by this illness.  Doing so will make your relationship vastly more positive, uplifting, and healthy.
  3. Service is Empowering - given it was my father that had this illness and that's about as close of a relationship as can be (along with your mother) I had a VERY strong sense of duty and service to him and his needs throughout his decline.  While I was perpetually conflicted about going to college, I was repeatedly reminded by my mom and even him in times of lucid thinking, that my attendance was PARAMOUNT and coming home as often as I did was good enough.  I'm sure that sense of duty came in part from my particular kind of upbringing but in retrospect, I recognize how central it was to my world and how I got through a lot of what we did.  Putting myself in service mode helped keep me grounded, focused, and as caring as I could be across the wide variety of situations we experienced together as a family and between my father and I.  Nothing I'd be experiencing was even close to what he was going through, and that was humbling but also empowering.

Treatments I Wished I Would Have Known About

Again, this my caveat here is that I'm no medical doctor, so seek professional help. These treatments have been collected over the years as I've read about various scientific studies around the variety of treatments that can help stave off the disease as well as slow it's progression.  These are some I wished I had known for my father and could have used but some of them I use myself today to ward off the potential for PSP. These are non-medical related treatments, by the way, only doctors will help speak to the medications that can help.

  1. Sauna Time - several studies have shown significantly positive effects of time in a sauna and staving off neurodegenerative diseases as well as slowing their progression.  I'll leave it to the reader to search for the variety of studies available.  However, the key points are the Sauna's have to be pretty hot, on the order of 175 degrees Fahrenheit or above for a period of 20-30 minutes per session.  Some studies looked at doing multiple sessions like 30 minutes at 175, 20-30 cool off period out of the sauna, and another 30 minutes in.  These sorts of regimens showed significant positive results over just one session.  Also, it's kind of a situation where the more number of days per week you do sauna sessions, the more and more likely you are to avoid the disease.  One study said with 5-7, 30 minute sessions (once per day) per week resulted in a 66% less likelihood of getting the disease.  That's AMAZING.  We bought a 4 person sauna and I use it regularly as well it being a great family, healthful activity as well as fun as a social activity, especially after a good walk or hike!  If you're looking to purchase, do not go for Infrared sauna as they DO NOT get hot enough.  Pursue electric heating elements or wood wired instead.  Our sauna was purchased from Almost Heaven Sauna's via Costco special.
  2. Ketogenic Diet - there isn't a lot of deep research here but there are some that describe treating Parkinson's with this form of diet (basically powering the body with fat vs. carbohydrates).  This website has a good overview.
  3. Sulforaphane As a Dietary Component - several studies (find one here) have shown the positive effects of this compound on treating the issues associated with Parkinson's.  It occurs naturally in many leafy greens but is found in massive quantities in Brocolli sprouts.  You can purchase sprouts and grow then yourself.  They're fairly peppery but edible.  They go great in about a tablespoon quantity in smoothies, on a sandwich, or in salads.
  4. Caffeine - it's been shown to have positive effects on avoiding Parkinson's and also as a treatment for tremors and other symptoms of the disease.  Find more here.
  5. Various Fungi have been shown to have positive effects on neurodegenerative diseases - I've read about this a lot but this Podcast by Joe Rogan with guest Paul Stamets was HIGHLY informative on the world of fungi but also they speak specifically to Parkinson's treatments involving Lions Mane and other fungi (I haven't tested this treatment myself but will mention it here non-the-less) that contain the psychoactive component psilocybin.  They suggest stacking Lions Mane (a legal and widely available mushroom, in powder form for drinking from Four Sigmatic) with some other varieties with psilocybin to both "clean up" defective neurons as well as promote growing new healthy neuron pathways (neurogenesis). I take the My Community supplement of the Host Defense Line that Paul Stemet offers.  Easy, cheap, with no known detrimental effects.  Good stuff. There aren't an abundance of studies on the healthy benefits of these fungi for a variety of reasons that Paul Stemet and other experts can speak to themselves.  From the  sources I've come upon, I'm more than convinced on their healthful benefits, for PSP, Parkinson's, and beyond.  
  6. Exercise, Exercise, Exercise - aside from the abundance of evidence that a healthy exercise regimen promotes general good health and a long life, it's effects on staving off the disease as well as slowing progression are widely known.  The more you exercise your body and brain to regenerate healthy neurons, neuron connections, and muscle fibers the less the disease will impact them.  Prepare for the various phases of the disease with best known exercise regimens.  Things like weightlifting and cardio when possible then down to seated and even laying down exercises for the later stages of the disease.

Lessons for Life and Business Transitions

There are many lessons here that are transferable to any life or business transition. Some of them are:

  1. Hope for the Best, Plan for the Worst - this is plenty cliché but it's oh so true when it comes to this disease.  Plan for the worst case scenarios to cap the trauma that may come as best as you can.  Same goes for life and business transitions, take action and plan for worst case scenarios, and you'll be much better positioned to maintain sanity and quality of life.
  2. Maintain Optimal Health No Matter What - life and business transitions can be best executed when your body and mind are as healthy as possible.  The same goes for preparing for potential ailments like Parkinson's and PSP.  I've found that crafting and executing a healthy regimen to avoid PSP has plenty of positive results for the hear and now (duh!)!
  3. Stay Open Minded and Seek A Variety of Sources - I'm not promoting unverified and rigorously studied approaches here but I am suggesting to step outside the narrow fields that seem so obvious.  When planning, executing, and managing Life and Business Transitions of any kind, seek resources outside of the obvious.  Read books outside your normal area of expertise in non-obvious subjects and you may find lessons that are powerful that can be directly applied to what you're doing today.  The same goes for experts.  Seek many within the area of need but also across different domains and practices.  Having this triangulation of information will make your resulting solutions and behaviors all the more robust.

Please, contact me directly if you'd like more support for yourself or a loved one recently diagnosed with these ailments or any other terminal illnesses.  I'll do my best to help and support you in any way I can and point you to other resources that may be helpful.