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.

Imagining the Parkinson's Story

What will my Parkinson's disease be like next year? In 5 years? How fast will my PD progress?  These are not inspiring questions.   And if you are asking them the answer in your head is not likely to be overly encouraging.  I could spend all day imagining the worst of predictions.

PD or no PD, we all spend time, often a great deal of time, translating our current struggles into tomorrow's sorrows. Why do we envisage unhappy endings in the middle of the story.  Instead, we could be writing the ending we want and working to make it a reality.  I am convinced that there must be no giving up on the best ending, even in the worst of times.

Great authors start fictional works with the end in mind. Successful adventurers begin their journeys with their destination chosen. It is a terrible waste to simply live like you write a journal or just wander through each day, month or year aimlessly without direction. There is little benefit to singing endless verses of the Doris Day fatalistic hit, "Que Sera Sera". How about memorizing Martin Luther King's "I Have a Dream" instead.  After all, which is more inspiring?

Someone once said, "Life wouldn't be so tough if it weren't so daily."  It is certainly true for those of us with PD. The dailyness is often tough, and we know it may well get worse. But what if we write our story as a battle that ends victoriously. What does "victory" mean to you? If you can't define it how will you attain it? Now I know that a positive plan does not mean it will play out perfectly. Circumstances may dictate edits to the plan, a twist in the tale or even writing a new chapter. But if you cannot imagine a happy ending then today's troubles will replay themselves as variations on the "woe is me" theme.

We must dare to imagine a way through the troubles we face. We must define success even when doing so creates the fear of failure. We must pursue our best dreams even if it means confronting our worst nightmares. If we fail to script a hero's ending to life's saga then we have become the villain.

Apathy to Optimism - My Parkinson's Pendulum

Parkinson’s disease can test the toughest and most hardened, playing havoc with your emotions. Over time, the Parkinson's pendulum picks up speed. Sometimes it is like a swing, pushed so hard that it reaches a near horizontal plane at both ends. It is then that I feel insecure, a sense of being out of control. Yes, there is a rush as I speed from one emotional pinnacle to the next, from push to pull and back again. But I wonder each time that I fly by the safety of the ground, who or what is pushing me out of control. Or am I simply pumping my own legs to achieve the heady heights and speed.

Life with PD has been like that lately. One minute there is exhilaration at the challenge, and the next discouragement. I move with ever-increasing velocity from enthusiasm to apathy, optimism to cynicism, ready to take on the future then over-burdened by the present. I know it is related to the PD, whether it be the disease itself, the medications, or the psychological reaction to the uncertain but inevitably compromised future.

And yet there are moments, like now, when the spin cycle slows enough for me to gather my thoughts and remember my commitment to being positive. You see, I realized that it must be a commitment, a decision, for there are those who will beckon me to visit the land of negativity, all the while gripping their own half-empty glasses. They seek to defeat any sunshine that might creep ever so tentatively from behind the cloud that is raining on every parade it can find.

At every step along the path of Parkinson's there are choices I have to make. Will I be brought down by the pending problems, or buoyed up by the challenge to find the silver lining. Will I, by words and attitude, choose to encourage others and myself, or fall into the pit of despair, self-pity and depression? In a phrase, will I be positively Parkinson’s or sadly resigned?

Of course, this vacillation in living goes to the very core of who we are. It forces us, even if we do not face the challenges of a debilitating and degenerative disease such as PD, to ask serious questions we fear because we do not have adequate answers. What or who will we put our faith in? At the risk of "wasting" our time, energy and money, what investments in the future will we make? Despite how we may feel; hurt, alienated, angry, or isolated, how will we live each day such that each person we touch will feel cared for? These are not questions that can be answered once and then never revisited. Curious, but that is the way it is with most important issues. They must form part of the fabric of our lives, demanding of us a response, a commitment, a decision, on a continuing basis.

The emotional swing goes forward then backward. For every action there is a potential reaction. Most of my reactions are ill-considered, emotionally-driven and self-centered. But I have learned that it is often better to feel the sting, take the punch, and study the source so that my responses can be reasoned, tactful, sensitive and caring. It is the way I can slow the swing of the pendulum to a measured pace.

It is my prayer that the start of a new month will be an opportunity to re-commit to the goal of living out my Parkinson's positively rather than succumbing to cynicism. Let me point the way to Hope and in the process replace the panic and pain of the pendulum's swing with peace and purpose.

A - Z for People with Parkinson's

Simple but memorable.  The following is based on a talk I gave at the Parkinson’s Society of British Columbia - New Diagnosis Day – October 3, 2009

These are things that I have learned and am still learning:

ATTITUDE – Attitude is everything. How are you doing with your attitude? – It’s a decision! Not a feeling. We didn’t choose this disease but we can choose how we are going to respond to it. It need not define us!

BRAVERY – Some days you will need it. You will feel sorry for yourself sometimes. That is okay. Just don’t stay there. Fight back.

CARING FOR OTHERS – Including your caregiver. We can be hardest on those closest to us. Focus on the world of others not self and you will be far less likely to fall into self-pity.

DEPRESSION – Watch out! It sneaks up on you. Anticipate it now. Beware if you are feeling anti-social, consistently down, apathetic, or experience change of eating habits or lack of sleep.

ENERGY – Fatigue is often an enemy. How will you combat the villain?  Naps are a great remedy.

FAITH – Faith can be very important to inform your attitude and give purpose to this chapter in your life. It gives focus to all other “letters”.

GROUPS – find others that are struggling and keep in communication. You are not alone.  Even if a group of two, it helps.

HELP – Be willing to seek and accept help. Don’t let your pride keep you from allowing others to help. Allowing someone to give to you requires humility and being vulnerable and communicates value.

INTELLECTUAL AND IMAGINATIVE STIMULATION – Beware the forms of entertainment that allow your mind and creativity to turn to mush. What stimulates your mind? How can you be creative?

JOURNAL – Keep track of what you are thinking and how you are feeling. Write, type or dictate ideas, plans and goals. Record the good, the bad and the ugly. It can then be understood by you (and others) better.

KNOWLEDGE – Keep up with what might be helpful. Be in the know. Great books and websites are available.

LAUGHTER – Look for the humorous. Spend time with people that make you laugh. Learn to laugh at yourself.

MAKE MEMORIES – Build the treasure chest of great memories and stories intentionally but be ready for the spontaneous. With whom do you want to build memories?  What kind of memories (places, faces, experiences)?  Ask why you want these memories. Need not always be laughter memories.  Remember that memories usually are shared.

NEVER GIVE UP – You are a model for those who watch how you live with your challenges. How will you “finish well”? What does that look like in your world? The disease cannot beat us if we defy it. Choose not to give in and let it get in the driver's seat.

OPTIMISM – About what? Breakthroughs are happening daily. Support the effort. Life could be worse. Life is still worth living when you have a mission. We all enjoy the infectious optimism that encourages us to keep trying, keep living, and keep hoping in anticipation of what good things will happen. Avoid wallowing in self-pity at all cost. A little is realistic, but no more.

PURPOSE – Find a purpose that transcends the disease and gives focus to the time, talents, energies and resources you have. It may be to visit and encourage others. It may be to learn a new skill or take a class.

QUALITY LIVING – What is it that impedes living a quality life? What is quality versus quantity? Define the values you ascribe to. Don’t ask what I can’t do, but rather what I can do. Make a decision to live a quality life despite or even because of the PD.

READ – So many books on dealing with disease or challenges (Tuesdays With Morrie). They are uplifting. Consider writing your story.

SOCIALIZE – Family and friends are keys to avoiding that “aloneness” feeling. The tremor and other symptoms often result in us feeling awkward and embarrassed. Combat that feeling of wanting to distance or isolate yourself.

TALK – Others often don’t know how to respond to you but you can talk to them about it. How can you do this without sounding like you want their pity, or being silent and afraid of getting a shrug?  Accept yourself as you are and others will accept you.

UNDERSTAND – The disease, the roles of the various health care professionals and the treatments available. Keep a drug diary. Record and research medication responses. Keep a binder of information on PD.  Join http://www.patientslikeme.com/.

VENTURE – What is an adventure? It is something a little scary, risky, out of the norm, exciting and challenging. Something we look forward to. Reach beyond the comfort zone. Every day has adventure.   Find it. Every day is a great day (sometimes we just don’t recognize it). So find and live the adventure in each day. Look forward to things (daily, weekly, monthly and yearly).  What do you want to do while you can? Every year pick something that is an adventure.  Mine is motorcycle rides.

WORK – Find something to keep you productive. If you are not able to work, make something your “work”. It will make the resting and relaxing rewarding.

XERCIZE - Get moving and keep moving. Anything – stretching, strength and cardio. Helps with fatigue, depression, plus physical symptoms. Build in accountability to someone (trainer/coach/nag).

Y ME? – This is an unanswerable question. Why not you or me? Why do you have the support to actually survive this disease? The reason does not matter, only how you respond to the card dealt to you.

ZZZZZZ – Get the sleep you need. How can you deal with insomnia? Ideas from others?

Maybe make one of these ideas a focus point for each of the next 26 days.  Let's just do it!

In the Beginning

Parkinson's disease (PD) starts out as innocently as a small outbreak of acne. It is annoying at first, but generally goes unnoticed. A few people seem to have eyes that see the rather unappealing flaws, but most don't much pay attention. But week after week, month after month, it gets worse. More people look at you a little too long with that quizzical expression (you know, the one that says, "There is something wrong with this picture. Now what is it?"). You are increasingly bothered by this "condition" that does not seem to go away. At some point you see the doctor. You expect the dismissive, "take a few of these pills once a day for the next two weeks and that nasty problem will disappear". Instead, after a few rather innocuous tests the unsmiling man in the white smock tells you the news that will change your views of your genetic heritage, upbringing, work, family, and/or even God (there has to be something or someone to blame). In short, your whole worldview is shaken. Most of all, the diagnosis immediately distorts your sense of the future.

There is no doubt after a second or third opinion, it's POSITIVELY PARKINSON'S. This is a life-altering, "incurable", degenerative and ultimately debilitating disease. This dying of dopamine in the brain, and its consequences, begin to define you. A thousand times a day your mind repeats mournfully, "I have Parkinson"s Disease."

The good news (of which there is precious little) is that you are unlikely to die from PD. The bad news is that you must learn to live with its greedy encroachment on "normal" living. And you have no idea how to do that!

PD is not a disease you can hide for long, although one becomes very adept at doing so (sitting on my jumpy right hand is my personal favourite). It is not a disease that progresses or evidences itself predictably, even day-to-day. It will certainly humble and frustrate you as it progressively conquers your limbs one by one, but no one will predict exactly when or how . Its symptoms might be 'treatable' by a plethora of pills, but at some point the adverse affects of the meds may be worse than the PD itself. There may be pain or not. Tremors or none. Stiffness might convert your face to an unblinking, expressionless mask and your legs to planted stumps. Depression, insomnia, loss of smell, and/or fatigue may invade your experience. The picture is not pretty.

Writing a blog focuses the mind. Writing one about living with a disease that has the disturbing ability to incessantly remind you of its unwanted presence is like looking through a microscope. It can be a frightening picture; like a horror movie with a progressively more scary storyline. No happy ending!

But must those of us contending with PD be permanently relegated to the ranks of those pitied by others (and sometimes ourselves)? I say "No!" After all, "normal" really is just a setting on a dryer. There is so much we can do. It was my 21 year old daughter who came up with the name "Positively Parkinson's" as we drove together from the Seattle Airport to our home in Langley British Columbia and talked about this risky business of blogging. I told her I wanted to start a blog to share words of encouragement with others dealing with PD, and those who care for or about them. The name was perfect.

So here it is, the beginning. I intend to post entries as often as my schedule allows. I invite feedback and comment; good, bad or ugly, I will try not to take it personally.. I will share stories and ideas (and I invite yours).

My hope and prayer is that this modest and personal attempt at sharing my PD journey and exploring ideas of how to live positively with it will somehow encourage others facing the often overwhelming and always uphill uncertainty of life with PD. We can be "Positively Parkinson's"!