Written October 6, 2023, At Kansas City, Missouri.

Most of us are creatures of habit. We like routine and when our routines are disrupted, we are often annoyed.

Example: An employee parking lot without assigned spaces, yet repeated use of a particular spot brings with it a sense of ownership. (annoyed and spoken under one’s breath) “Who the f*** parked in my spot today!”

Another example: Earlier this week I was invited to sit in on a community college history class. It was an excellent experience, but a bit sobering. I was significantly older than the professor, and shocked to see how young college students had become in the last 50 years! Prior to class I had been cautioned to sit in a particular seat so as not to “take a student’s seat”. This is despite the class having open seating.

Those are relatively benign examples yet when change is imposed by another person or agency and we feel powerless in its face, that person/organization may become the target of more extreme anger, vilification, and even conspiracy theories.

I recall when national legislation mandated the demise of most incandescent light bulbs, instead requiring the use of the more efficient compact fluorescent and led lights. Incandescent lights typically last 1,500 hours and convert only 10% of electricity into light, the other 90% is converted to heat. Who remembers the Hasbro “Easy-Bake Oven” which used a lightbulb as the heat source with which children could bake small cakes, “just like mom”.

Conversely, compact fluorescent and led lights last upward to 25,000 hours and use 75% less energy to create the same amount of light. A 60-watt equivalent led light uses only 7 watts of energy, about the same as an old incandescent “night-light”.

It seemed a no-brainer; less electricity used in a longer life bulb meant significant money saved and it was good for the environment… Yet certain (dare I say conservative?) elements of society saw this as a grand conspiracy. They decried this as an attack on our personal freedoms, much as they did with the introduction of and later mandated use of seatbelts, motorcycle helmets, smoke-free flights, childhood vaccinations, etc. (COVID masks anyone?)

My dear mother (may she rest in peace) railed against the Obama Administration, blaming the President for taking her lightbulbs from her. Educated with a master’s degree, logic could not eclipse her anger. I learned the hard way to avoid this and many other topics during our frequent telephone chats, “Peter Michael, I don’t know why YOU think the way you do. NO ONE ELSE IN THIS FAMILY DOES!”, and with that there would be a loud “click” the line going dead.

Our electric utility in this part of Missouri, Evergy, recently implemented a timed rate structure. During the weekday peak use hours of 4 pm to 8 pm rates become significantly higher and from midnight to 6 am they are significantly lower. This provides a financial incentive to moderate use during the periods of high demand, thus reducing the need to construct greater generation capacity… good for the company, good for the environment, and good for the customer, win, win, win, right? Not with everyone.

Social media has been lit up with some folks calling it communism, the heavy hand of government, corporate greed, etc. My efforts to explain the system and the rationale behind it have merely made me a target of vilification and conspiracy, “I bet you work for Evergy!”. Even producing the proof that my electric bill has been reduced 30% by timing the use of appliances and changing the thermostat during peak hours has fallen in those circles upon deaf ears.

Sometimes we are our own worst enemy. Sometimes we act contrary to our own best interests… just to make the point that we can. And sometimes those who reach out to lend a hand find that the hand gets bitten. It is a wonder that our species has flourished. Give us more time and Nature will eventually have the last word.

Peace Everyone. Pete

 

Written September 28, 2023, At Kansas City, Missouri.

I learned today of the murder of a friend in Northumberland, England. The coward took her life late last night, a senseless act of premeditated violence that has left the region, the country, and those of us over the world who knew her, in shock.

I met her earlier this year on March 31st as I was hiking the trail along Hadrian’s Wall. It was the day before my birthday.

It was also a difficult day. Long, and punctuated by steep climbs and treacherous descents on rain slicked rocks and muddy cutback paths. My spirits had been brought low by the bone chilling drizzle and dense fog which frequently denied me the full vistas that my eyes yearned to see.

She stood waiting for me at the bottom of a steep vale. I was breathing hard, and my legs trembled from the fight against gravity that had threatened to bring me crashing down the cliff face.

She was famous; indeed, a star having appeared in countless photographs, paintings and even with Kevin Costner in the movie, “Robin Hood, Prince of Thieves”. Yet she was humbly a servant dedicated to all of us, rich and poor, young and old, every day of the year.

Upon sight of her my emotions were immediately lifted. I beheld a family gazing upon her in awe. I approached, and after a moment’s hesitation I embraced her. Strong, tall, almost eternal, she was unyielding to my arms yet soft to my soul. My spirits soared! She was glorious in the pictures that I took of her, but I knew that the images would not convey to Christine her majesty.

Last night she died, murdered. What I know is that a 16-year-old male has been arrested, allegedly having cut her down in her prime. His weapon, a chain saw.

Image from “Wandering Wounder” on Wikipedia

Along Hadrian’s Wall, her home has long been known as “Sycamore Gap”. It is where she put down roots. It is where she now lies in death.

Birds once sang in her arms. No more.

Lovers once laughed at her feet. No more.

Children once danced around her. No more.

… and aging hikers found encouragement to continue, no matter how difficult. No more.

Today the Earth cried a tear and so did I.

Peace Everyone. Pete

PS. There was another tree. I caught a glimpse of her in February of 2017 as I drove past. It was near Carpinteria, California. She was so stunningly beautiful that I risked an accident to stop and take her picture. She died later that year in the Thomas wildfire that tore through the region.

 

Written September 24, 2023, At Kansas City, Missouri.

For those “tuning in” for the first-time, links to my previous posts that recap what brought me to this point are set forth below in a postscript.

It has been over 2 months since my last update, and nearly 4 months since my DBS surgery. The short answer to the question that has been privately asked of me many times is that I am well. Actually, I am better than well.

In my July update I reported: “…I was already experiencing a major improvement of my tremors, post-surgery and post brain bleed (without controller activation). The doctor posited that a “honeymoon period” of post-surgical tremor reduction is common. It is a temporary result of the minimal ablation to the thalamus that results from the insertion of the non-activated electrical stimulator in the brain. However, those benefits would have usually disappeared by now.

She further theorized that the additional impact of the brain bleed in the thalamus had extended and enhanced this effect, much as ablation through Focused Ultrasound might. She believes that the significant tremor reduction I am experiencing is still temporary.”

4 months later and the “temporary” tremor reduction persists. Moreover, the slight numbness in my tongue and occasional stumbling over the pronunciation of certain words has almost disappeared. I have returned to my former activities and exercise routine, including travel to Colorado with hiking at altitude (10,000+ feet), enjoying amazing sunrises, an early snowfall, and the joys of a pint in celebration of Oktoberfest. PROST!

 

Earlier this week I had a follow-up appointment with my neurosurgeon, Dr. Chang. I drew an Archimedes spiral, two straight lines and gave a sample of my handwriting. This was compared with similar efforts at my first meeting with her in late December of 2022 where I was asked to trace within pre-printed spirals and straight lines. A writing sample at that time was out of the question. Here are the contrasting “before and after” efforts of December 2022 and earlier this week:

December 21, 2022. 5 months before surgery.
September 20, 2023. Nearly 4 months after surgery.

A good friend and retired medical doctor once told me that one should hope never to be an “interesting case” to a physician. I became an “interesting case” when I developed a brain bleed nearly a week after the first surgery. That rare complication typically occurs at or immediately after the surgery. In Dr. Chang’s considerable experience, it had never occurred days after surgery. “Interesting”.

The “honeymoon effect” of tremor reduction typically lasts a few days, rarely as long as a month, never four months. “Also Interesting”.

The quality of my tremor reduction is consistent with the level of tremor control experienced by patients whose DBS controller has been activated. Dr. Chang candidly admits that at this point there would be little further to gain in activating my device. “VERY Interesting”.

I think that I would have still preferred being an “ordinary” patient.

Will this unanticipated benefit last? It could end next month, next year, or never. If it does end then I will return to activate the DBS controller. Dr. Chang and I are scheduled to meet again next May to review my progress. Only time will tell.

The “Next Thing”:

On October 22nd Christine and I depart by plane for Fort Lauderdale, Florida. We will board the 900 passenger Viking Star for an 18-day cruise through the Panama Canal.

Viking Sky, from the Viking website.

The itinerary includes ports-of-call in Cozumel, Columbia, Costa Rica, Cabo San Lucas, Los Angeles, and of course Panama. As in travels past, I hope to post pictures and a near daily narrative, so stay tuned!

From the Viking website.
Peace Everyone. Pete

PS. I did not come to the decision to undergo DBS surgery easily. I announced it to my wife in an open letter published as I was hiking in Spain last year. Here is a link to that letter:

“The Decision”

I wrote in greater detail the specifics about the DBS surgical procedure. Here is a link to that post:

“My DBS Surgery”

The day before my scheduled surgery I wrote a post that was both a conclusion to our travels in England and my pre-surgery update. Little did I know how prophetic the title to that piece was to be:

“Shake, Rattle, and Roll (the dice) Surgery”

My second surgery occurred on June 16th, but on June 7th I suffered a brain bleed with symptoms that mimicked a stroke.

My DBS Surgery, A Stroke of Bad Luck.”

July 17th was my appointment to activate the controller that had been implanted in my chest on June 16th. Although the activated controller promised excellent tremor control it was decided to leave the unit turned off for a later date.

“My DBS Surgery, Dark Cloud or Silver Lining?”

 

 

Written August 13, 2023. At Kansas City, Missouri.

I was recently engaged in a deep conversation with a good friend. The conversation wandered to a discussion of their loved one who had passed a few years ago. I was aware that theirs had been a close relationship yet tinged with some minor regrets. I asked, “Do you still feel any regrets over what you might have done differently for them?”

“Yes, I suppose that I still do.” To which I responded, “When do you think you will grant yourself resolution?” (Or is it absolution?)

“Maybe never” came the too quick response. Clearly, my friend had grown comfortable with the small regret still held.

I found myself wondering if there is anything positive in holding a regret and not granting oneself resolution.

It occurs to me that with resolution comes closure, an end to the unfinished business, time to move on. Holding on to a regret may be one away of not letting go and holding the departed close in one’s thoughts and feelings.

Just a thought.

Peace Everyone. Pete

 

Written July 18, 2023. At Kansas City, Missouri.

For those “tuning in” for the first time my previous posts recap what brought me to this point:

I did not come to the decision to undergo this procedure easily. I announced it to my wife in an open letter published as I was hiking in Spain last year. Here is a link to that letter:

“The Decision”

I wrote in greater detail the specifics about the DBS surgical procedure. Here is a link to that post:

“My DBS Surgery”

The day before my scheduled surgery I wrote a post that was both a conclusion to our travels in England and my pre-surgery update. Little did I know how prophetic the title to that piece was to be:

“Shake, Rattle, and Roll (the dice) Surgery”

My second surgery occurred on June 16th, but on June 7th I suffered a brain bleed with symptoms that mimicked a stroke.

My DBS Surgery, A Stroke of Bad Luck.”

July 17th was my appointment to activate the controller that had been implanted in my chest on June 16th. 3 hours were set aside in the University of Kansas neurology clinic for the Neurology DBS Coordinator to work through identifying the setting that would give maximum relief from my life-long essential tremors yet avoid needless side-effects.

On July 18th I met with the neurosurgeon, Jennifer Chang, MD for a detailed post-operative examination and discussion of my condition.

The appointment on the 17th was with Alyvia Elliott, RN, BSN, the Neurology DBS Coordinator, and took every bit of the 3 hours that had been scheduled. She methodically explored various settings. Some of the settings evoked tingling in my right hand and right side of my tongue. Others caused my speech to thicken. None seemed to impact my gait. Alyvia successfully found at least 2 settings which gave me the ability to hold a full glass of water in my right hand and bring it to my lips without shaking its contents onto the three of us. Mind you, THAT is an AMAZING accomplishment in my world and something I have not been able to do for more than 50 of my 71 years.

Unfortunately, that is not the end of that story. The physical impact of the repeated charging of the brain implant was exhausting. Moreover, the anxiety that I experienced weeks earlier was slowly building over the course of the appointment and threatened to again become “crushing”. I could feel the air slowly escape the room and leave me to figuratively suffocate.

We took a break. Ms. Elliott was concerned and suggested we suspend further efforts. At her recommendation I took a walk with Christine to regain my center. It helped, but I was shaken. She would be discussing in detail the results with my neurosurgeon and neurologists.

On July 18th Dr. Chang met with me and Christine. She allowed that a longer delay for the activation of my DBS controller had been considered due to the brain bleed, however it was thought that since the bleed had resolved and my residual symptoms were minimal it was appropriate to proceed along the original schedule.

I had remarked to Alyvia Elliott on the 17th and to Dr. Chang on the 18th that I was already experiencing a major improvement of my tremors, post-surgery and post brain bleed. The doctor posited that a “honeymoon period” of post-surgical tremor reduction is common. It is a temporary result of the minimal ablation to the thalamus that results from the insertion of the non-activated electrical stimulator in the brain. However, those benefits would have usually disappeared by now.

She further theorized that the additional impact of the brain bleed in the thalamus had extended and enhanced this effect, much as ablation through Focused Ultrasound might. She believes that the significant tremor reduction I am experiencing is still temporary. I am scheduled to see her again in September for another follow-up. For now, activation of the DBS unit is on hold pending the elimination of the last residual symptoms of the brain bleed. These consist of slight numbness on the right side of my tongue, and an occasional slurring of a word, which is barely noticeable even to my wife.

She also hypothesized that my anxiety might not relate to the brain bleed, but rather is a manifestation of my subconscious fears of the procedure and the complications that I have experienced.  This is a possibility that I now recognize. She suggests that prior to an appointment to again activate the DBS controller I take a dose of the antianxiety medication prescribed on June 14th. I have not used the medication over the last 2 weeks, but I find her suggestion to be spot-on.

So… I have been so focused on the “dark cloud” of the post-surgery complications that I have failed to appreciate the “silver lining” benefits that I have already experienced, whether they are temporary or long term.

The things that I have truly come to appreciate are: The kind thoughts, words, and prayers from my many friends both here and abroad; The helpful and attentive professionalism of the physicians and staff at KU Medical Center; The love and caring of my children, grandchildren… And most of all my wife of 46 years, Christine.

Peace Everyone. Pete

PS. I am increasingly more comfortable out in public and engaging in selective social activities. I am now cleared to resume my exercise routine which consists of yoga, stationary cycling, weight training, and walking 5 miles a day on average. Communication is vastly improved, and I again appreciate in advance the thoughts, wishes, and prayers of my friends and family. I hope all will understand that I cannot directly respond to each of you. A general “Thank You” will still have to do for now. Pete