Health Gone Awry – Info and update

By Randy Pierce

Randy sits in a hospital bed with a bandage wrapped around his head and an IV.
Randy’s EEG make-over gives him that Rastafarian hospital blend we probably shouldn’t have shared!

“The secret of health for both mind and body is not to mourn for the past, not to worry about the future, or not to anticipate troubles, but to live the present moment wisely and earnestly.”
– Buddha

I’m home from my six-day stay at the Massachusetts General Hospital and feeling well despite an assortment of apprehensions. While I did provide some social media updates, I wanted to share the real struggle and ultimate result with the 2020 Vision Quest Community. I will try to answer any and all questions and wish to ensure you all know that overall I am well at this point.

I have a long term undiagnosed neurological disorder which may be a mitochondrial disease or something entirely unknown to the present medical community. My first awareness of this condition began in 1989 when I was plunged into legal blindness through the death of my optic nerves. Over many years there have been an assortment of episodes which brought the total death of my optic nerves and complete blindness as a result, a vestibular assault which had me in a wheelchair for nearly two years and what is now termed severe peripheral neuropathy in my feet and hands. These challenge me in various ways, though I’ve overall found compensation methods which allow me to continue a healthy and meaningful life.

On Sunday, February 20, I was running along the Charles river with Rob Webber when I paused, felt an awkward fading of my consciousness, dropped to a knee and with a warning to Rob proceeded to lose consciousness. I was out for roughly one minute before waking to assure him there was no pain. My pulse was steady and strong and my breathing easy. I did black out again for another minute or so and as I came to it was touching to realize how many people in the area were eager to help in an abundance of ways. As we were just about 1 mile from Mass General Hospital, it was an easy choice to visit them.

I had several more episodes of reduced consciousness. I underwent a battery of tests which first confirmed my cardiac health was excellent as that would be a leading concern in any consciousness loss. I was admitted for what would ultimately be six days of intensive testing. Geneticists (due to my past explorations), neurologists, and many other specialists swarmed me with every reasonable test to help them try and understand what was happening. Ultimately they formed a team of incredible experts who will begin a longer term search into my mysterious condition.

For the present they determined a deep brain seizure was likely causing these episodes. I’ve been placed upon Keppra, a seizure suppressant, and have had only one episode since the medication began. For the present we are treating me with the precautions of someone newly diagnosed with epilepsy such that I make choices which do not put me at risk of serious harm should another episode occur.

Despite having had a 10-20 second warning before each loss of consciousness, I’ll be exceedingly careful to ensure I won’t jeopardize myself or Autumn should this occur. This means no unsafe heights, drowning risks or even busy roads alone. I am fully cleared and encouraged to resume my presentations, workouts, and even training for and running the Boston Marathon.

There is continued follow up testing and exploration already in process. I have clear instructions on what to do when episodes occur. I’m comfortable entirely with the response of the great team at Mass General. That said, it is always emotionally frustrating to be reminded of the reasonable frailty which my condition helps to place upon me.

It is a bit intimidating to be confronted with the legitimate limitations and possible complications ahead in my life. I choose to not live my life in fear and struggle to sustain a healthy outlook as much as possible. They are not all strong moments and it is reasonable for me to have a difficult time with all of this. I will continue to put my best effort into all aspects of my life, including the medical investigations.

My reward for this effort are the generally positive results of my work with 2020 Vision Quest, NHAB, Lions and life in general such as the encouraging words shared by many along the way. All any of us can do is make our best attempts at responding as we feel is appropriate and with your help I will continue to do that as I strive for new heights… just not the fall-risking versions at the present moment!


13 thoughts on “Health Gone Awry – Info and update

  1. Randy, We are wishing you a speedy recovery and keeping you in our prayers. Let us know if there is anything we can do for you. Warm regards always, Becky and Dan Smart

  2. Thanks for the update, Randy. As always, we’re behind you in facing this new challenge.

  3. You continue to be a positive influence on everyone who has ever met you! You’re attitude towards life’s challenges is inspirational. Carry on!

  4. Thanks for the update, and I am glad you have what sounds like a great team of smart and curious docs. If “that which does not kill me makes me stronger” then you are a strong man indeed, and getting stronger. Wishing you a respite from these current troubles and a safe and happy training regimen uninterrupted till you run down Boylston!

  5. Thank you all for the comments here and on social media. I am frustrated and working at the response but as for many of us it is not always smooth. I think it’s fair and good to share when I am struggling. The expected and accepted reasonable reality is that I am not physically, emotionally or even mentally strong at all times. I am blessed with tremendous support for which I’m very appreciative. I am finding the balance between learning and seeking responses as well as simply coping at times. I’ve now had a second episode since the Keppra began adn taht’s obviously disconcerting. I will be evaluating how to ease back my schedule just a little to work in enough mental rest and physical recovery to the whole of this. Thank you again for the kind support

  6. Ugh. So frustrating. (And kind of scary!) Here’s hoping they can come up with a fully effective treatment soon, and that in the meantime you’re able to find enough workarounds to keep the limitations to a minimum. Thanks for keeping us posted.

  7. Well that’s a whole lot of no fun, but you’ve already proven more than a few times that you can overcome a lot. I hope you get better in a hurry!

  8. So the sad part is that several more episodes took place and as a result we incrased my dosage. Today is day 6 without an episode since that dosage increase. I am feeling a little of the lethargy likely as a side-effect of the medicatin but we are hoping my body will adjust. There are some reasonable restrictions we’ll keep in place until we’ve proven out more time without an episode and int he meanwhile I have tests next week and on April 1 to continue our explorations of my challenge.

    While there’s more to share, I’m trying to be thorough and share everything responsibly. I generally feel well enough when not having an episode and I’m determined to give my body what it needs and find the balance in pushing myself appropriately along the way. Yes this means easng back when I might not want at times and also forging ahead when it’s reasoanble to do so. Thanks again for the kind and supportive words here and in many other formats!

  9. Well there are significant new updates and at some point I’ll share in more detail but the short response is that we have now confirmed my autonomic nervous system is functioning improperly. thisis a known possibility for someone with demyleanting poly-neuropathy which is a part of my challenge. We are now fairly certain this is the cause of my unconsciousness episodes which had previously been suspected to be the result of deep brain seizures. THis is enither an improvement or necessarily a worsening just a different root cause. It does explain why my episodes persisted even on the anti-seizure medications. I’ve got some immediate follow on procedures such as a spinal tap tomorrow to determine if the demylenation is still active and if so to treat it. I have already begun a medicine intended to help support the autonomic nervous system and over the next few weeks we’ll hopefully build confidence in it effectively managing to remove those unconsciousness episodes.

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