Monastic Musings on Parkinson's

The meal was eaten in silence. That is, except for the reader. He was perched above us in a small balcony protruding from the wall about 8 feet above the diners. Thirty or so members of the Benedictine community sat silently on simple wooden chairs on the outside of the U-shaped table arrangement, eating and listening to an echoing essay about the Roman Catholic church in Africa. Supper was comprised of bread, salad and a rice dish, with applesauce for dessert. Not being a social gathering, it was over in about 25 minutes. The food was plain, but tasty, and certainly adequate, much like the room in which the meals were eaten. It was 25 feet high at its steeple peak, covered with wood paneling rising from colored concrete floors to windows through which beamed the unusually warm January sunrays. A vibrant, iconoclastic style mural of Christ and his disciples filled one end of the hall, evidencing a reverent and loving dedication of thousands of hours of painstaking attention to detail. I have always been honored and humbled to be eating with these men who have voluntarily surrendered many of what we would call modern life’s benefits. Father Placidus, Father Mark, Brother Luke and Father Abbot John welcome me despite the fact that I am not a Catholic. This is a community that lives St. Benedict's vow of hospitality.

This setting, Westminster Abbey in Mission, British Columbia, has become a place of refuge and peace for me for more than 25 years. I come here to a world that has no rush hour, or rush at all, to step off the treadmill for a day or 2, or more. The guest quarters provide the rudimentary comforts; a room with a bed, a small desk, chair and a lamp, and bathroom, but no more. It is here, in relative silence, beauty and solitude, that I come to think, read, write, plan and pray at least a couple times a year. I have never found a place that is better for these contemplative activities.

It took me a while, and still does each time I come here, to get used to living without the constant barrage of noise, distraction, people and obligations. I recognize that this may not be everyone's idea of a good time. But this is the place where I can unbundle the many applications that I have concurrently running on the hard drive of my life. It is a time of retreat. A time to refresh, reboot or defrag, if you will, for the onslaught of spam, viruses and phishing to which I will return.

Perhaps, most significantly for me, this brief repose gives opportunity to consider the important, instead of just the urgent, matters of living. Since being diagnosed with Parkinson's 4 years ago this month, I find I need and value these times more. Perhaps it is the fatigue or vulnerability caused by the disease. But whatever it is, these times alone at the Abbey provide a much-needed rest stop in the race I run.

I have found that, while the 2 activities may seem similar, there is a significant distinction between isolation and solitude. As people with Parkinson's it is often easier for us to isolate ourselves rather than face questioning looks and the seemingly inevitable embarrassment of social interaction. But solitude is not hiding. Rather, it is meant to prepare us for engagement with life as fully as it can be lived. But without time for contemplation, how can we determine what it means to live fully?

I wonder why we are so often afraid to be alone with ourselves in silence?

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!

Physio for the Frozen Shoulder

Paolo was as direct and merciless with his words as he was with the pressure he brought to bear on my shoulder, neck and back. It was the first time that I had met him, but he was already talking to me like he had known me for a lifetime. He was unapologetic when challenging me, "why are not you making the lifestyle changes that you know you need to make?", "why are not you getting exercise 3 times a week?", and "when are you going to start taking care of yourself?". Good questions. Too bad I did not have any good answers?

At the time I made my first appointment with him my shoulder and elbow were a little sore and stiff, but I could not isolate the cause. Was it the PD?  These days I immediately identify almost any physical, cognitive or imaginary change to my bodily functioning as being attributable to Parkinson's. However, my second response is to pooh-pooh that first response for fear of the label "hypochondriac" being put on my business card. By the time I made it in to see Paolo the physiotherapist today, the range of motion in my shoulder, elbow, and then neck, were becoming more limited everyday. I have been wearing an arm brace just below my elbow, as it seemed to help with daily tasks. But the pain streaked down my arm whenever I put my arm/shoulder in the wrong place or position.

Despite the pain of the probing by Paulo this morning, it was evident afterwards that my range of motion had increased thereby validating his diagnosis and making his prognosis quite likely: if I do not work on the "frozen shoulder" now I will run the risk of rendering my right arm of limited use. I am already becoming a virtual left-handed person due to the tremor, and this would only speed up that switch.   My elbow pain is apparently from acute tendonitis.

I suppose it is only appropriate that today, the 4th anniversary of my "PD Diagnosis Day", I should receive a wake-up call from someone I had never met. After all, that is what happened 4 years ago. Maybe I need the feedback from a distance instead of those close to me. Change must occur. I must do a better job of shining a light into the future and responding now to what I can discern there.

So tomorrow morning I climb back on the "wagon" with my personal trainer and recommit myself to exercise at least 3 times a week for an hour, focusing on aerobics, core and stretching (yuck, how boring).

Bucket List - 2010

What are you looking forward to?

Although it is raining outside tonight, the weather in this brand-new year has not been excessively rainy. And the snow has managed to make only the briefest of appearances. Despite the gloom and gray of threatening skies, there must be a reason why this time of year causes me to think about my "bucket list". While it seems a strange and somewhat morbid fascination, or even addiction, I find a growing excitement when contemplating what might be struck from that list in the year ahead.

If you remember the Jack Nicholson and Morgan Freeman movie (The Bucket List), the 2 main characters recognized their mortality and realized that time was inevitably running out. What does one do when one faces that reality? Some would sigh and bemoan the fact that they cannot do everything they would like before they "kick the bucket". Others would simply ignore the reality of the clock winding down, effectively denying the inevitable, and continue to live life in the same fashion as it had been lived before. But, recognizing the value of the time we have to live, some of us make a "bucket list".

Whatever "kick the bucket" originally meant, and whatever one believes about the afterlife, there is certainly merit in those of us with Parkinson's disease asking the question, "what do I want to do now that I may not be able to do in the future?" In my experience, and I expect and that of others, there are a multitude of rather phenomenal benefits that occur from answering this question and then working on the resulting list.

The first benefit is that one's priorities are committed to writing.  In many cases the real important things in life are not written down. This is what triggers the imagination of the characters in the movie. The really important stuff of living is often subverted to the urgent or obligatory demands that confront us daily. Somehow it seems selfish to answer the question, "What is really important to me?"  But what could be more important than asking and answering that question?

Secondly, making and pursuing a bucket list gives one focus, a sense of priority, something to look forward to.  Rather than simply anticipating the inevitable deterioration of our physical and mental functioning, we can concentrate on living life to the fullest, as may to some extent be defined by our circumstances, but is often most limited by our choices. This exercise gives purpose beyond the daily regime we often fall into, rather than choose.

Thirdly, you can take it from me, and others who have pursued marking items off their own bucket lists, that the enjoyment and sense of achievement is thrilling. It leaves a legacy of stories to tell and encouragement for others to reach beyond their comfort zone into a land of hopes and dreams that can come true. I have found that my list has grown even as I have checked off items each year. And with it my desire to seize the day. Carpe diem! Some of my friends with Parkinson's have grasped this rallying cry, making it their solemn commitment in the fight against the corrosive effects of the disease. Every goal accomplished is a strike against the our opponent.

Fourthly, but not finally as there are too many results to discuss here, by listing the items our hearts desire we can begin to see how very much there is that we can do, instead of focusing on what we cannot do. It is in this way that we can defeat the enemy of hopelessness that so often hides in the shadows of this disease that seeks to take from us the life we had, and thought we would have.

Go around the world. Visit friends or relatives or the home you have not seen since you were a child. Write a book. Skydive or scuba dive. Go to Antarctica. Get a degree. Learn a new art, hobby, skill or language. Climb a mountain (not me!).  What are you really looking forward to this year?

Hyperbaric Hope for Parkinson's?

Being slid into a man-size acrylic test tube was the perfect metaphor for what was occurring. It was an experiment, and I was the object. It was obvious from the hospital gown that I was wearing, the wristband, and the fact that I was lying under a crisp sheet with a warm blue blanket over top of that. The door above my head shut, and despite the lack of my hearing aids, which along with all metal had been removed shortly before lying down, I could hear the hiss of what sounded like gas entering the acrylic canister. It was odorless (at least as far as my smeller allowed me to detect), cool feeling and colorless. I did not react as the pure oxygen filled the small space around me, but I immediately concluded that this was no place for people with hyperactive imaginations or claustrophobia, despite the fact that it was quite comfortable.

As a Scuba diver, I was familiar and quite at ease with the idea of going down to 2 atmospheres (about 60 feet under the surface). I adjusted the air pressure in my eardrums by swallowing, yawning and, when necessary, blowing out while closing my mouth and holding my nose. I descended slowly in the dive and after a few minutes reached the appropriate level. There I would remain for the next 90 minutes.

Under 2 atmospheres of pressure your bladder is prone to remind you that there is no toilet in the airtight transparent capsule. Thankfully, I had accepted the invitation to visit the men's room before beginning.

At first I thought that my fatigue would easily allow me to sleep despite the movie playing above my head during my time in the tube. At first I was too aware of everything that was going on, the sensations and how I was feeling. And then I got interested in the suspense movie. I was comfortable in my crystal clear cocoon and found myself wishing I could stay there longer when my ears started to pop as the pod was decompressing.

That was my first of 10 experiences in a hyperbaric oxygen chamber. Klaus, Sanja and Payman of BaroMedical, who monitored my every move from the moment I arrived until I left each time, were completely professional, careful and caring. There was no attempt to "sell" me on more treatments than I needed to make my decision. They seemed as interested as I was in finding out whether hyperbaric oxygen therapy (HBOT) would have a positive effect on my Parkinson's disease.

From my reading and surfing the Internet, I was aware of some evidence that HBOT could help people with Parkinson's disease. But there was no significant amount of scientific support for this application. HBOT has proven helpful and is entirely accepted by informed members of the medical profession when it comes to healing wounds, burns and other uses. Virtually every sports team has a facility either for its own use, or readily at hand, to increase the speed with which any of their athlete's injuries can be healed. There is also considerable evidence that this therapy can have significant benefits for some neurologically-based diseases.

While there were no significant improvements in my symptoms after my chosen experimental 10 "dives" of 90 minutes each, I felt entirely satisfied with my experience. I would have always wondered if I had not tried it.

Although I was disappointed in the lack of results, it also gave me plenty of opportunity to think through my initial reticence to try something out-of-the-box like Hyperbaric Oxygen Therapy. I discovered that it was my fear, my being afraid of disappointment, afraid of looking foolish or having my high hopes dashed.

I found that this is but another fear that must be confronted. We must have hope. No matter how many times the harsh waves of life’s sea dashes our fragile vessel of hope against the rocks of disappointment, we must continue to be willing to try the unconventional again. For that is how discoveries are made.

After watching 3 "heist" whodunit movies in a row, I elected to watch a CBC series on the history of Canada (Canada: A People's History). I found it extremely well done and fascinating, especially the parts about explorers who ventured to the New World against all logic of the day to confront merciless forces for pitiful gain. It was ironic that I watched stories of those brave, sometimes reckless, men who, with little more than laughable hope and insane tenacity, survived starvation and danger to find new lands. Despite the disappointment that became their stock and trade, these adventurers persevered, finding new paths through the wilderness and passes across the mountains.

Was it worth it? Certainly! It is not a failure to learn that something that might work for others does not work for me. For I am but an explorer, and hope is my daily ration.

I Resolve to Fight

It is the wee hours of a new year as I type one-handed in the dark silence, seeing nothing but these words on a glowing screen and the single lamp post illuminating the road outside my den. Hearing nothing but the soft click of computer keys and my own breathing. I find myself teetering on the brink of 2010 with my usual ambiguity.

New Year's Day always raises doubts in my mind about what I should feel about the year gone by, and do in the year ahead. It can be defeating to look back on last year's failures to meet my own expectations (not to mention those of others). But I abandon that exercise quickly as I prefer to focus on the invigorating newness; the expanse of days ahead, untouched and unspoiled, like a field of freshly fallen snow, so fragile and yet beckoning to be claimed by the first footprints. But I will not tromp upon this virgin year with careless feet. Instead I will choose to mark its canvas with a fusion of mindful steps and the serendipitous; laughter and silence; companionship and solitude. I will brush off the dust of past journeys as best I can and marvel at the choices and opportunities in the days ahead.

I resolve to unravel the mystery of 2010 one day at a time to discover the riches in memories to be made, lives to touch and be touched by, and wisdom to be gained and shared. Were it not for fear that lurks around each dark corner I would carelessly stride into the days ahead. But, as poorly armed as I may be, I must face the fear with faith and fight the giant who threatens to imprison me in its shadows. I must be the challenger of my foe, the conqueror of the enemy that makes me tremble and stiffen at the same time. If I will not take arms then how can I wage war against the evil of this adversary? Would I send mercenaries to wrestle for my freedom? How will others learn to fight if I remain resigned to wait for occupation by enemy forces?

I know from the past, and news from other warriors, that the combat will be hard, with no assurance of defeating the opponent. But would it be acceptable to cower, or worse, admit that I am beaten and surrender to its fearsome grip?

Forgive me for my attempt at dramatic imagery and the resulting exaggeration, but Parkinson's is a battle to be fought on many fronts. I resolve to fight in ways I can. Will you resolve with me?