Saturday, May 18, 2019

You Inspire Me

For the first six years of my life, I lived with my parents on my grandparents' farm. Both my parents worked, so my Grandma Olga, provided daycare for me. This amounted to me remaining within arm’s-length while she did her chores around the farm. She was a hard-working, simple, immigrant woman. She had married my grandfather when she was very young and had a total of 17 children (of which, 11 lived to adulthood). She never went to school and could neither read nor write. She signed her name with an X and never had a driver’s license. Her native language was German, which meant that when she was angry with me for misbehaving, which occurred frequently, she chastised me in German while wielding a hefty wooden spoon aimed at my behind. I did not need to know German to understand exactly what she meant. Grandma taught me to perform simple tasks, such as how to find eggs that the chickens had hidden. She showed me how to milk the cow, and then separate the cream from the milk by cranking the handle of the separator. I often observed her carding wool, and then using a treadle-operated spinning wheel in order to create yarn used to make sweaters and socks. Her chores were endless.  Grandma was on her feet from before dawn, when she could be found in the farm kitchen making breakfast, until it was dark and she was pulling the sheets off the clothesline so the beds could be made. I do not remember her ever being ill or going on a vacation.  Little did I realize then, or for many years after, how much my uneducated grandma inspired me.
To be inspiring we must be inspired.
Scott Barry Kaufman, a psychologist at the University of Pennsylvania, wrote an article for the Harvard Business Review called "Why Inspiration matters". In it, he said, "Inspiration allows us to transcend our ordinary experiences and limitations. We often overlook the important role of inspiration. Inspiration transforms a person from experiencing a culture of apathy to experiencing a world of possibility."
What exactly does it mean for you to be inspired? The root meaning of "inspire" comes from the idea, "to breathe in".  Simply put, we need to breathe in (be inspired) before we breathe out (be inspiring).
What, or who, is the ultimate source of our inspiration.  You see, "Inspiration does not come from us, but through us." This is a radical statement in today's rational, humanistic world. It takes us out of the centre of creation and compels us to recognize that we do not “own” inspiration. It is a gift. A gift we must share in our own unique way, just as my Grandma did. We cannot keep it to ourselves. We must breathe out.

Over the past six years, I have been inspired by many students. They have given me a gift by sharing their stories. They have touched my heart. Because each of us our own way can inspire others, we can change the world.
We all need to engage this world -- a world that desperately needs to experience love, compassion, reconciliation, and hope.  So, I challenge you to ask yourself, "How can I inspire others?" For many of us, myself included, we need an inspirational launching pad into the adventures to come. We need to look for, listen for, and seek the breath of inspiration that will come to you.
To those of you who struggle sometimes with finding inspiration amidst the frustration, pain, self-doubt and rejection resulting from Parkinson’s disease, let your transparency, your achievements, your courage truly inspire others.  And as you do, you surely will change the world.

Saturday, May 11, 2019

May Day! May Day! May Day!

Starting on May 1, this repetitive phrase echoed in my head. These are words of a distress call, used since 1923 by radio personnel to communicate extreme danger. In fact, the phrase used has nothing to do with the month of May. It is simply the English transformation of the French phrase “m’aider” (literally, ‘help me’). That made sense to me.

As of May 1, I entered a phase of life that may present the greatest challenges yet.  I resist the word “retired“. It sounds too much like giving up. The idea of “Freedom 55” (or whatever) has always seemed to me like a nightmare more than a dream.  The word has so many connotations. Unneeded. Busy but barely useful. Easily forgotten. Irrelevant. Losing touch with what was important. Self-consumed.

The past six years have been a daily adventure. Energizing. Inspiring. Jam-packed with challenges. It was living life to the fullest, feeling fulfilled. But as of April 30, I am now more often than not characterized as retired” or “semiretired”. There is more fear than freedom in that label. While I have often yearned for more free time, it suddenly stares back at me from the empty pages of my calendar.

May Day! May Day! May Day! Help! How do I fight back against the impending sense of purposelessness?

The first day of May was the beginning of my post-President life. I am trying to relax, rest and recuperate from the busy schedule and mountaintop activities of the past few months. The farewell events, extraordinarily kind comments, new title of “President Emeritus”, and generous gifts were all gracious, if not embarrassing. But, as thankful as I am, those are now in the past. What do I do now?

This post, and my return to blogging under the label of “Positively Parkinson’s”, is my way of sharing the fears and falsehoods of this new chapter in my life. I anticipate this season will present a broad spectrum of experiences, from daring and dangerous at one end, to sadness and self-isolation at the other.

I have often recommended to people caught in the turmoil of mixed emotions to ask themselves question: “what are you afraid of?” So… when it comes to my current state of life, what am I afraid of? Here are my top three:

Getting old. While my Parkinson’s disease (diagnosed in 2006) seems to be largely under control, thanks to my body responding well to the medications, I am worried that the increased free time will simply mean more focus on the symptoms of my disease.

Irrelevance. For the past six years, I have been fully engaged in trying to meet the demands of a consuming job. While demanding, it was incredibly rewarding, and consumed all of my available energy. But now what?

Loneliness. While I enjoyed the support of an extraordinary woman, who has stuck by me for more than 45 years now, I have become accustomed to maintaining many relationships, in large part because of the roles I have played. Will these friendships dissipate over time?

None of these three fears is likely to be resolved easily. But, in the meantime, I also recognize I need to seek solutions that give time to self-care. Balance. Learning how to avoid reacting to every request with a thoughtless, “Yes”.

Perhaps, above all, I need to be willing to risk reaching out with a personal, “May Day”.

Thursday, May 9, 2019

It Is Good to Be Back

A little more than six years ago, I accepted the position of serving as President of Trinity Western University. I am confident that most people probably thought I was out of my mind. After all, why would a 60-year-old with Parkinson’s disease accept such a challenging role? I am still not sure I have an answer for that question, but the past six years have been both the hardest and most rewarding of my life. I have learned more than I ever thought possible (and enjoyed hanging out with the students).

But I have missed writing this blog. And I promised myself that when my term as president of the University ended, I would pick up my pen (actually, my voice recognition software) and continue writing these posts. My desire for this blog remains the same; to be encouraging to others through transparently sharing my life as a person with Parkinson’s.

Some who may be reading this may be asking themselves the question, “How did my Parkinson’s progress during these past six years?” Well, the PD did not get better, but it did not get that much worse either. I was pleasantly surprised that my symptoms did not worsen significantly. This minor miracle certainly did not result from my complying with the doctor’s orders. My neurologist strongly advised me to avoid stress, get lots of exercise, and ensure I get enough sleep. I did none of these. The job was so demanding that I just did not seem to have time. It could be that my work simply constituted a sophisticated form of denial. In any event, I feel about the same as I did six years ago. I chalk it up to being one of those people with Parkinson’s who respond well to the standard medication (carbidopa levodopa). I do not take the slow progression of the disease for granted. In fact, I count each day as a gift.

So, at the age of 66, I am returning to the practice of law in the hopes that I can still “serve as a trusted problem solver”[1] . In future posts I will let you in on some of my plans for the future. For now, know this: life is still in an adventure and having Parkinson’s disease just adds to the challenge. I plan to remain ‘Positively Parkinson’s’.

[1] this is taken from my law firm's Mission Statement, which can be found by clicking here.

Wednesday, July 18, 2018

Parkinson's Disease: Adversity or Adventure

About six months ago I was challenged to do a Ted Talk. After writing the narrative of the talk, competing to be one of the finalists, and then writing and rewriting, practising and practising more, I had the opportunity on May 30 to give my talk. It has the same title as this post. It can be found on the TEDx YouTube site here.

I must admit that it was a lot more work than I thought it would be, but it was also a lot more rewarding in terms of learning what it takes to produce one of these talks. I think the most satisfying aspect of this "adventure" was the thought that this might be an encouragement to some; encouragement to be transparent about the challenges we Parky people face every day, and encouragement to choose adventure and the positive attitude that goes with it.

So please feel free to pass this along, provide your comments, share as you feel inclined.

LINK IS HERE and I was to.

Saturday, April 1, 2017

Return to Jacksonville

I am back in Jacksonville, Florida for the first time since riding my motorcycle from coast-to-coast (San Diego to Jacksonville) in less than 50 consecutive hours.  It is April Fool's Day.  It seemed fitting.  I was invited by Dr. Oguh to be the keynote speaker for the Parkinson's Disease Symposium hosted by the University of Florida. The topic was "So You Have Parkinson's, Now What?"  Folks here were warm and welcoming, and seemed ready and willing to see life with PD as an adventure driven by passion.  This was a portion of my talk.

Do you live life with a passive purpose? Or are you prepared to commit to a passionate purpose?

Choosing to live life with a passionate purpose is rarely easy. I am reminded of the saying: The outer strength of a person is determined by how difficult it is to knock him or her down. The inner strength of that person is evidenced by how that person gets up again”. Of course, we will fail from time to time, or even most of the time. But failure is a remarkable teacher. And failure is wasted if we do not choose to use it, to learn from it, rather than denying, ignoring or blaming. Suffering, pain and loss are inevitable. But we get to choose:
Will it be the pain of trying and failing, or the pain of failing to try?

Choosing a positive attitude, risking hope and committing to a passionate purpose each constitute a major challenge for those of us with PD. Some of us are tempted to give up before we start. Others turn back when the road gets rough or the weather gets bad. How do we respond when promises of a cure seem continually 5 to 10 years away?  How do we find our way forward?

The answer to these questions is “it’s up to you”. One step at a time. The difference is daily.  Each day we can start thinking about the fact that we are making an investment of a very valuable commodity; 24 hours.  Time is the ultimate nonrenewable resource. Failure to invest it guarantees there will be no return, only hopelessness. 

Let me ask you to pause right now. No matter what your circumstances, your age, the degree to which the disease has disabled normal functioning, you can make a decision. You can choose a passionate purpose for your life. It is a reason to get out of bed in the morning, to be disciplined when facing the demands of the day, and a reason to be satisfied when crawling into bed at the end of the day. Purpose yields hope and it is hope upon which positive attitude is grounded.

My daily challenge, my commitment is found in three words. Engage. Encourage. Inspire. These words constitute a high calling. 

Engage. We must engage others, risk rejection, hurt and disappointment.

Encourage. We must encourage others whenever we can: literally, this word means to put heart into someone.

Inspire. We must inspire others. This word comes from the Latin meaning to breathe into. This gives others hope and purpose, inspiration.

Engage. Encourage. Inspire. These words are a call to action, a call to attitude. Can we do that? Can we chose a positive attitude, to get better rather than bitter?  I believe we can.

Sunday, September 18, 2016

Self-Care Plans – World Parkinson's Congress Presentation

On Tuesday, September 20, 2016, I have the privilege of speaking at the World Parkinson's Congress 2016, to be held in Portland, Oregon between the dates of September 20 – 23.

My first of two talks will be on Self-Care (although I must admit that I feel quite inadequate to cover this topic given my failures in this regard). One of the tools that I will be discussing is the use of a Self-Care Plan (SCP).

An SCP can serve as a constant and invaluable resource that will allow a person with Parkinson’s, a caregiver, a healthcare worker, a medical professional, and even family and friends, access to comprehensive information that will result in a higher quality of life than you would otherwise be capable of experiencing.  I suggest you collect all the material necessary for your SCP in a three ring binder with multiple tabs to reflect a Table of Contents. 

Table of Contents of Self-Care Plan Binder

1.      1.  Self-Care Plan – under the first heading/tab would be a description in detail of what might otherwise be called a wellness plan. This would include a general description of what is sought to be achieved by a SCP, goals and aspirations, as well as priorities, rewards and limitations. There are excellent smart phone apps available for free or very little cost (under $10) in which a great deal of relevant information related to a wellness plan can be kept for easy access.
2.   2.  Symptoms and Side Effects – under this heading would be a comprehensive description of diagnosis and onset list of both motor and non-motor symptoms experienced and side effects of medication (which may be difficult to distinguish). These descriptions should be as comprehensive as possible, with timing, duration and effective means of dealing with these matters. This could be a separate binder or journal. Alternatively, subheadings or sub-tabs could be used. Included under this heading would be:
a.      a description of all known symptoms experienced, when they started and stopped, their severity and potentially associated cause or trigger, any factors alleviating or amplifying symptoms;
b.      a description of all reactions/responses to medications, when experienced, for how long, severity and relieving factors.

3.      3.  Health Care Team (HCT)– under this tab should be a complete list of all healthcare professionals including your family doctor, neurologist, key nursing staff potentially surgeon in relation to DBS), their contact information, addresses, and other relevant information.

4.      4.  Therapy – listed under this tab would be the same kind of information as noted under the first heading for your HCT, but in this case it would be for therapists, including physiotherapy, occupational therapy, speech therapy. It may be helpful to list any therapeutic regimes, responses to different therapies or other relevant information here.

5.     5.   Nutrition/Diet – all information related to dietary and nutritional concerns.

6.      6.  Weight – if fluctuations are of concern.

7.      7.  Exercise – all exercise plans, trainer/coach particulars and contact information, results and accomplishments.

8.      8.  Pharmaceutical Medications – a complete list of all medications prescribed, and changes, together with the relevant dates, reactions to end a copy of the comprehensive information provided by pharmacies at the time of the prescription is being filled.

9.      9.  Sleep, rest and fatigue – record sleep sufficiency, disturbances, irregularity (consider using phone apps to record sleep patterns). Also describe fatigue levels, timing, severity. List nap(s).

10.   10.  Cognitive functioning, depression, anxiety, self-isolation and apathy – if not listed elsewhere, provide comprehensive information on therapist and personal coach. Detailed journaling would also be helpful to assist in assessing both onset, responses and treatments.

11.   11.  Caregivers – list particulars with respect to any caregivers, including arrangements made with them.

12.   12.  Technology – list of computer applications, technology involved, passwords, mechanical assists.

13.   13.  Involvement in the advocacy and clinical trials/studies – relevant details.

14.   14.  Psychosocial – describe feelings of guilt, self-pity, anger, lack of confidence.

15.   15.  Social Options/Support Groups/Peer Support/Friends and Family network – particulars with respect to groups and/or individuals. Recording of dates, events and occasions.

Sunday, July 10, 2016

When I’m 64!

“Will you still need me, will you still feed me, when I’m 64?”

Anyone under the age of 50 probably won’t recognize the title of this blog. The Beatles (who most people have at least heard of) recorded the hit, “When I’m 64”, at the end of 1966, 50 years ago. It became one of the lead songs on the four time Grammy award-winning album, “Sergeant Pepper’s Lonely Hearts Club Band”. 32,000,000 copies were sold, more than any other Beatles record.
As of today, July 10, 2016, I can no longer sing this song in anticipation. I remember first hearing it when I was 14 years old, a mid-teen country boy consumed with dreams about the adventures and exciting opportunities that would fill my next 50 years. The age of 64 seemed like an eternity away. But here it is, my 64th birthday has arrived much faster than I thought it would.

The lyrics of the song are somewhat of an enigma, especially when you discover that Paul McCartney had written the lyrics at the ripe old age of 16. Sung from the perspective of a teenager wondering what it would be like at the age of 64, the song is a series of questions posed to his prospective lifelong partner. See the lyrics below. The song expresses personal insecurities and asks questions that remain relevant even after 50 years. Will we still celebrate life when it’s not quite as romantic as it once was? Will we consider the needs of each other? How will we spend our time together? Will we continue to live meaningful lives? Will we have enough money? Will we have family to enjoy? Will we be secure in the commitment we have made to each other?

When I get older
Losing my hair
Many years from now
Will you still be sending me a Valentine?
Birthday greetings, bottle of wine?

If I'd been out
Till quarter to three
Would you lock the door?
Will you still need me
Will you still feed me
When I'm sixty-four?

I could be handy
Mending a fuse
When your lights have gone
You can knit a sweater by the fireside
Sunday mornings go for a ride
Doing the garden
Digging the weeds
Who could ask for more?
Will you still need me
Will you still feed me
When I'm sixty-four?

Every summer we can rent a cottage
In the Isle of Wight if it's not too dear
We shall scrimp and save
Grandchildren on your knee
Vera, Chuck, and Dave

Give me your answer
Fill in a form
Mine for evermore
Will you still need me
Will you still feed me
When I'm sixty-four?

For my part, it has been an extraordinary 64 years. Far from shallow, boring or tedious. Renae and I, both 64, have had, and continue to have, phenomenal adventures and meaningful opportunities far beyond our teenage dreams. But alongside the fullness and blessings of the past 64 years there have also been times of great pain, loss and struggle. I’m sure that when the Beatles first performed this song they did not anticipate that two out of the four (John Lennon and George Harrison) would not make it to the age of 64. Paul McCartney would not have likely guessed that he would be married three times.

The final three lines of the song’s chorus continue to strike a chord of insecurity. Even at the age of 64, and perhaps even more so, I sometimes wonder whether I am needed. Given the reality of Parkinson’s, a degenerative, currently incurable, and quite likely debilitating disease, I may well need to rely on others to feed me. Yet, despite any insecurities, there is a great deal of living to do at the age of 64. Aging presents us with a remarkable opportunity. It gives us a chance to be thankful for so much, which attitude in turn helps us to be positive, from which follows a willingness and desire to care for others. At 64 we have some questions to answer. But they need not be the ones asked in this song. Rather, we can ask ourselves; how can we help others? How can we encourage and value members of our family, our friends, or simply those we encounter from day-to-day? And for those of you who can still sing the song with anticipation, you don’t need to wait until you are 64 to ask yourself these questions?