Personal strategies learned the hard way for others afflicted with Young-Onset Parkinson’s

“Just the facts, Ma’am” – first, some background on Parkinson’s.

Being a progressive disease simply means that the illness becomes progressively worse over time. Add the word “incurable” and it’s easy to see why a person with Parkinson’s Disease (PD) might have an occasional dark moment.

Parkinson’s is an “incurable, progressive, neurological disease.” Almost all you need to know in three easy words. Let me add a fourth.

Transition – a person with PD is always in transition. Always.

PD relentlessly eats at one’s body and mind, not with imagined or self-induced symptoms, but with the real, measurable physiological depletion of a person’s Dopamine producing capability. Dopamine regulates muscle control throughout the body and also impacts mood.

Levodopa – essentially the pill form of Dopamine – is hands-down the most effective medication to alleviate PD’s symptoms. The proper dosage, however, is critical: too little and the symptoms will not be reduced; too much causes the writhing, loopy, physically exhausting body movements of dyskinesia that make it difficult to function, communicate, or even think clearly.

Levodopa loses efficacy in the treatment Parkinson’s as the disease progresses; e.g. more must be taken today to produce the same positive results of six or twelve months ago. Determining the proper dose and interval between doses is a never-ending task trying to catch the “sweet spot” of nearly normal. As levodopa becomes less effective, the margin between too much and too little narrows until eventually it is gone. That is why PD always wins in the end.

Depression of varying severity is a hallmark of Parkinson’s. PD depression is not a by-product of the constant wear on the body and loss of hope for the future, although many afflicted with Parkinson’s have some of that too, but instead it is a separate physiological entity; it is a real physical symptom. Please go to this link for more info:
http://www.usatoday.com/story/news/health/2012/11/28/parkinsons-health-depression-study/1731641/

But that doesn’t mean that depression can’t be overcome, at least for the majority of the time, by a patient accepting complete responsibility and control of their treatment and taking advantage of periodic moments of relative calm to formulate a strategy to counter PD’s insidious effects. To do so requires creative and proactive responses to PD’s progression every step of the way, doing whatever it takes to tweak medication dosage and timing until something works.

My neurologist is great, but she – like everyone else who does not have PD – doesn’t have a clue on a personal level what it actually feels like to experience PD symptoms. You simply can’t know without experiencing the disease.

My neurologist appointments used to involve a series of questions to try and decipher what was working, what wasn’t, and how best to tweak the meds. This information went through the multiple filters of my best description of a symptom and her attempts to understand how the medications impacted these symptoms. I quickly realized that a more responsive and empowering approach would be to “cut out the middle man” and take control of my own medications. My neurologist is supportive of this strategy, which I greatly appreciate.

This is not to say that my neurologist isn’t a key part of my overall strategy to counter PD symptoms; I rely totally on her advice regarding the safe limits of each medication and whether there are other options to try. But beyond this, all dosage and timing of pills taken are one hundred percent in my control. If a drug regimen begins to prove ineffective, I don’t have to wait for a Doctor’s appointment; instead, I adjust until I find something that does work.

This approach would appear to be obviously advantageous, but in my experience very few PD patients want this responsibility (this is only an anecdotal guess on my part and I could actually be far from the mark). Empowerment is good. Personal lesson learned #1:

Take personal control of your medication regimen.

The second lesson is to step up to each challenge Parkinson’s presents, while looking the facts square in the eye and acknowledging that at the end of the day the disease will eventually win. Keep fighting. Although you will not win the war, you can win individual battles; you can win “small victories.” The sense of accomplishment from these victories can help one handle the pain, fatigue, depression, and disorienting, exhausting dyskinesia.

Try to take on normal challenges accepted in the past, even if this means being in the public eye, a factor that will almost certainly increase stress and aggravate your PD symptoms. Parkinson’s causes anxiety, which causes stress. Stress in Parkinson’s patients usually significantly increases their symptoms. My advice is to do it anyway.

For me, accepting this type challenge acts as a way to go head-to-head with PD on the disease’s home field. It’s a way to push back. It might be difficult at times, even painful, but when such a challenge is met, it turns a small victory into a very big one.

Here are some personal examples. I still serve on the local school board, often run public meetings, and have given two graduation speeches (a third one is coming up in June) to about 5,000 people. I also occasionally have the opportunity to present on scuba diving and writing to at times hundreds of strangers in different parts of the country. Just traveling to these locales can be a physical challenge.

It is not easy. I always have second thoughts before such events, I’m always scared and stressed, and so far, I have always followed through anyway, usually with my walking canes nearby. But guess what – so far, I have never had to use them: just as it was prior to PD, the bigger the challenge, the greater the reward.

Tackling these challenges has given me the confidence to keep diving, but only with a carefully thought out plan to counter symptoms. I’ve found that the more I dive the easier it becomes, and that I’m capable of far more challenging dives than I thought possible even four years ago.

Parkinson’s eliminates many individual choices over time – it feels great to push back at PD on the disease’s own terms and win. It’s a big victory. Personal lesson learned #2:

Step up to new challenges.

Next lesson: exercise relentlessly and creatively adapt your routine as needed. If an exercise becomes problematic immediately flex to a different one. I’ve had to do this so far with running (I had been an avid runner since about age 15), the elliptical machine, and weight lifting. My current exercises are Hot Yoga (modified as needed), the stationary bike, stair climber, hiking, and when all else fails simply walking or doing leg exercises while lying down. Personal lesson learned #3:

Exercise is the key to mobility and a positive attitude: move!

Let me try to tie it all together with a personal example. About four months ago my body began to make a fairly dramatic shift toward the bad. For the past two years my transitions from “off” (too much or too little levodopa) to “on” (the sweet spot) and back were reasonably predictable. My “off” symptoms of greatest concern are extremely forceful muscle contractions in my right ankle and right wrist, causing pain and making it impossible to walk unaided.

To counter I nearly always have two canes nearby (they are collapsible and kept in a back pack) to avoid getting stuck as it can take up to an hour or longer for an additional dose of levodopa to take effect. When periodic wrist pain is too great to use the canes, I also have collapsible crutches.

Some other “off” symptoms include: joint pain, tremor, deep fatigue, loss of balance, sleep attacks, an extreme free-floating anxiety that comes on without warning, and periods of depression. None of these are fun, but the muscle contractions potentially pose the greatest risk to my immediate physical being (i.e. unable to walk and becoming stranded or causing major injury to ankle or wrist).

For a very long time, my PD symptoms were fairly well controlled with relatively predictable doses of levodopa. My other five daily medications remain quite stable, but these are not nearly as effective as levodopa.

Several months ago this regimen no longer worked, not by a little, but by a whole lot. There seemed to be a constant swing between being over or under dosed.

There was no warning: one day the regimen of the past two years worked just fine, and seemingly the next I could not find the “sweet spot” of balance. Being in constant transition between the two physical states of over or under dosed is very, very difficult, tiring, painful, and confusing.

It took me several months, but I think that I’ve discovered a new workable levodopa strategy for this next round. I now cut most of my levodopa pills in halves and quarters, and in the last month I’ve developed a written plan through trial and error. The plan requires 15 specific times during the day and night when I take a pill or pills of different dosage. I’ve got about 15 minutes leeway on either side to make it work, all other things being equal. But all things are never equal.

Feeling ill, being excessively fatigued, working out too little or too much, hunger, or getting cold all impact proper levodopa dosage levels and times significantly. It’s not an exact science, and it requires constant real-time adjustments.

What have not changed are my overarching strategic commitments in countering PD.

I still exercise 6-7 days a week. I’m still on the school board. I travel to Chicago in two weeks to give presentations on the Andrea Doria at the Our World Underwater dive expo. This routine of challenge keeps me motivated and positive, not all the time, but most of the time.

One last bit of advice: if you have PD, consider making it widely known. This helps fend off misunderstandings down the line when one exhibits inexplicable behavior, whether it’s at the local supermarket, an official function, or a friendly get together.

It would probably be impossible to keep PD a long-term secret anyway. It goes back to controlling what you can; I would prefer that people find out that I have PD on my terms. Parkinson’s leaves no choice in most facets of life: it’s liberating to take control over those aspects of your life that you can.

And when all else fails, laugh often and loudly.

Cheers,
Pete

Empty

Pain is nothing,
Generality of convention,
Relative term, sentence,
Omnipresence,
It’s real.

To feel,
Prickle, tingle, ache,
Unobserved trick,
Saturated wick,
No course.

Full remorse,
Acts unfulfilled,
Dreams left floating,
Death’s ill gloating,
To wait.

The bait,
Life’s solemn promise,
Passion’s blitz,
Temptation’s glitz,
No. It’s done.

The rabbit’s run.

Tilting at Windmills: Limitations of the professional aviation safety model in sport diving

In 1985 I joined the Navy. After a 14 week stint at Aviation Officer Candidate School (“An Officer and a Gentleman”), I began pilot training.

Military life was a different world in all sorts of ways (I still fold my “skivvies” in a 6” X 6” square, but at least I no longer iron them), and the changes in routine ranged from confusing, to frustrating, and occasionally even to the welcome.

Naval Aviation’s attitude toward safety fell into the welcome category, and it was immediately apparent to me that sport diving could benefit from some of the lessons learned operating from the carrier deck.

But, as the saying goes, “The devil is in the details,” and I had to wonder which aspects of Naval Aviation’s methodical “systems” approach to safety were transferrable to sport diving, and which were not. What appeared at first glance as an easy task in 1985 became more complex with each passing year.

Naval Aviation’s safety program permeates every aspect of both training and actual operations; it is not open to negotiation. In contrast, it was clear to me that for practical purposes a single, cohesive “dive community” did not even exist.

Each dive certification agency at the time (and maybe still?) was in active competition for new students, there was little standardization, and recreational divers lacked a common goal or purpose.

Because the Navy’s rapid training cycle did not allow for the accumulation of significant experience (experience being the single greatest contributing factor to proficiency, in my opinion) prior to operational deployment, the training system had to pick up the slack from day one.

No such sophisticated safety system exists or probably can exist in sport diving, where the primary incentive for participation is recreation.

It was still puzzling, however, why so few individual components of Naval Aviation’s successful safety program had translated effectively to diving. It appeared that even the most fundamental of safety lessons learned by the Navy, such as the disciplined use of briefing checklists, had not been widely adopted outside of the military.

There’s a saying in Naval Aviation: “You need a plan to deviate from…” Without a baseline of coordinated expectations prior to a flight, a reasoned response to the inevitable surprises that crop up is impossible, especially if limited in experience.

With that in mind, I saw an obvious place to start. It seemed a no-brainer to me that a reasonably thorough briefing before a dive would be an obviously worthwhile safety enhancement for virtually every diver.

In 2004, I decided to mass produce a dive safety briefing checklist based on my experience flying A-6 Intruder carrier attack jets. The goal was to create a short, easy to use checklist that would take an experienced buddy team of sport or technical divers a nominal 30 minutes to brief the first time it was used, and then perhaps 15 minutes to review prior to subsequent dives.

The checklist was purposefully short because it was assumed that a truly comprehensive “Naval Aviation style” brief (minimum of one hour; as long as four hours for a complex strike – this does not include planning time) would meet resistance from participants in a sport motivated primarily by a desire to have fun. Whether “fun” was defined as a relaxed tropical dive on a shallow reef or a deep, highly complex wreck or cave penetration was moot. In the final analysis, sport divers share no common mission other than to have a widely varied definition of “fun.”

The checklist served as a briefing tool between dive team members as well as with surface support personnel to clearly define basic responsibilities and procedures utilized in the most common aspects of open-circuit diving. Briefing examples included such varied items as an in-depth discussion of each diver’s gear configuration and the plan for transferring an incapacitated diver from the water back into the boat.

The briefing checklist was a total failure.

Granted, it was designed for function over glitz. Printed in black and white on a hard, durable two-sided plastic card with rewritable blank spaces, it was not especially pretty. It certainly did not fit in with gear purchased by divers who cared about the color of their fins.

But I believe the failure was due to more than a lack of curb appeal. I had grossly underestimated the average diver’s willingness to slow down the “fun” long enough with what could be perceived as a 15 to 30 minute “downer” of a brief talking about all the things that could go wrong.

There was an obvious conclusion to draw: an honest understanding and desire for a culture of safety simply did not exist in diving as was enjoyed by professional aviation. Thorough briefings provide pilots with the “warm and fuzzy” of being truly prepared for any contingency. Sport divers seemed to consider a thorough briefing checklist alarmist at best and overall a nuisance of limited value.

This story serves as an illustration of the fundamental difference between diving and professional aviation that makes it exceedingly difficult, if not impossible, to incorporate the central beneficial feature of an aviation safety program into sport diving: the structural ability to develop a professional culture – or “system” – of safety.

Please do not misunderstand; there are definitely transferrable practices and procedures in professional aviation that have been or will be (and most definitely should be) adapted to diving. My point is that the limitations of utilizing an aviation safety model in total are significant and probably insurmountable.

Not recognizing this fact could conceivably lead to misplaced confidence, complacency, and potentially new, unforeseen types of mishaps to begin to develop in diving. The law of unintended consequences comes to mind.

Here’s an example.

Required aviation skills such as maintaining adequate situational awareness, or “SA,” serve as an example of a developed aptitude that might only be possible to widely implement in an organization that possesses a culture – or system – of professional safety.

SA as a practical skill can be thought of as a pilot’s mental picture of the location and attitude of his or her aircraft and all surrounding aircraft in three dimensions, the status of an aircraft’s mechanical systems, the aircraft’s progress along a navigation plan, weather considerations, communication requirements and status within the cockpit and with all outside players (for example air traffic control or other jets in a strike package), and other mission-specific considerations such as enemy threats, all updated constantly in real time.

Finally, this cumulative awareness needs to be preserved while flying an aircraft under extreme stress due to mission requirements (i.e. getting shot at) or system failure (e.g. engine fire).

When an emergency arises, none of the above listed SA components can be automatically jettisoned to accommodate a pilot’s mental capacity to handle the new situation. When a pilot is overwhelmed by new information and rapidly changing circumstances, an automatic prioritization process of identifying and disregarding the least important input at that particular point in time must occur.

“Task saturation” is the technical term for this feeling of being totally overwhelmed, of literally drowning in a sea of inputs (the sensation can initially make even breathing difficult), secure in the unsettling, deeply seated understanding that multiple complex decisions need to be made right now, and that choosing the wrong course of action will likely lead to your death or that of someone else in the flight.

There are numerous catchy phrases for task saturation, such as making room in a pilot’s “bucket” (i.e. head) for surprise decisions and tasks.

Seamless delegation and prioritization of the tasks required for mission completion, first, and survival, second, are routinely practiced by Navy pilots in extremely complex simulator sessions and during actual training flights.

A true safety system ensures that every pilot spends a significant amount of time in scheduled, recurring training with a “full bucket.”

When task saturation then occurs in the real world, as it inevitably will, the pressure of being overwhelmed is mitigated by lots of intense practice spent in this regime. Experiencing the sensation of a “full bucket” in a life and death situation is certainly still stressful, but it definitely does not come as a surprise, and it is in fact a familiar feeling.

Having the opportunity to spend time with a “full bucket” is not fun, and many pilots would probably skip the training if given the choice, that is, until they encounter a real-life situation where their “bucket over-flow-eth.” But they are not given the choice.

Many aspiring pilots wash out because they simply “can’t hack it”: they do not possess the “right stuff” to get the job done. The only way to know this for certain is through rigorous, highly complex simulations followed by closely monitored – and at times extremely dangerous – actual flights.

There’s another Naval Aviation saying, a bit hackneyed, but applicable all the same: “The more you train in peace, the less you bleed in war.”

And when all is said and done, despite hugely expensive, mandated recurring practice and testing in complex simulators, “Loss of SA” is still a frequent causal factor for many Naval Aviation mishaps.

Virtually no determined sport divers need fear being barred from diving altogether because he or she is unwilling or unable to adapt to a model approach to safety.

Operating within the unyielding confines of a true safety system offers other advantages as well. Professional aviation’s success in not making the same mistakes twice is well established. This is made possible by the requirement to document every incident and disseminate this detailed information to a centralized body for future training improvements, with the process being guaranteed by a system of strict accountability enforced by an established chain of command, either military or civilian.

DAN does a phenomenal job as a limited central clearing house for sport diving mishap summaries. Could you imagine how busy DAN would be if every sport diving incident, big and small, was required to be reported?

Now add in what if every recreational diver were required to read every single report in a timely fashion, prior to every single diver being thoroughly trained in any new procedures or policies introduced as a result of lessons learned from the mishap?

It is this type of uniformity that allows for the existence of a highly complex, but common and intuitively understood, language that reinforces a culture of safety in Naval Aviation and serves to self perpetuate these lessons as one of many intrinsic feedback loops.

A true safety system is structurally organized to constantly and automatically learn and improve.

In my opinion, the extreme demands of system standardization, training, and tested, consistent performance at the highest level, all overseen by a clearly defined and empowered chain of command with actual clout, can be described, but must be experienced to be truly appreciated.

This is in essence what produces a culture of professionalism in safety. These are the components that enable the development of a true “safety system.”

It’s my guess that the vast majority of divers do not have direct, actual experience participating in a relentlessly demanding organization such as professional aviation, and particularly military flying with its more evolved concept of allowable levels of risk.

This is the salient point: it is the entirety of many complex pieces that allow the professional aviation system to be so safe. In my opinion, a “system,” or culture of professional safety, as experienced in aviation simply does not and cannot exist in a sport conducted at the end of the day for enjoyment and lacking a chain of command, common mission or purpose, vast funding, and standards which preclude participation by a large number of aspirants.

There is much to be gained by divers in studying aviation safety practices, but as every pilot knows, complacency is the greatest danger. I would encourage sport divers to utilize the individual pieces of professional aviation practice that prove useful to safety, but also to recognize that these are but small components of the overall system and subject to significant limitations.

For diving to adopt a true safety system with the fidelity of professional aviation would require rules and resources that would defeat the purpose of the sport: to enable the average person to enjoy the underwater environment.

But that’s just my opinion; I’d love to hear yours…

The author was a Navy carrier pilot for a decade, spent another ten years flying for United Airlines, and holds a University of Washington Masters in Strategic Planning for Critical Infrastructure, a graduate program heavily reliant on systems theory and risk management.