Monday, January 30, 2017

Meeting Dad with PD from Davis Phinney's Daughter

Thanks to my local support group leader, Zack Earp, I ran across an excellent article about meeting someone with Parkinson's.  In "Preparing People to Meet Someone with Parkinson's," Davis Phinney's daughter highlights some important visual symptoms to understand.  Kelsey Phinney explains that in addition to the expected tremors that a majority of patients display, though not all PD sufferers have tremors, there are facial expression, balance, stiffness, and communication issues to be aware of.  Kelsey is a neuroscience graduate who wants to help the broader community understand that by preparing people to meet a Parkinson's patient, they may be able to get past some of the visual distractions and see the individual as more than their brain disease outcomes.

It is important to understand that ideas may not be as fast to emerge in a conversation, though your friend or loved one with PD may have some great stories to tell as an individual who once possessed a very expressive personality.  The facial mask and delay in getting words to be formed in a discernible syntax are issues that may put off they listener, therefore it is worth knowing what to expect in order to appreciate that the Parkinson's patient is not defined by their disease, but is the person inside the body struggling with odd-looking movements or lack of facial expression.

My final point is that in addition to physical movements, postures of limbs and facial expressions, there are bodily functions of digestion, heart rate, swallowing, breathing and urinary systems, to name several, but not all of the issues.  These additional symptoms are autonomic in nature and  would generally be found in this degenerative brain disease.

Some days are better than others, but I appreciate the points Kelsey has made,  if you take a few moments to read this article it will equip you with some great suggestions in preparing distant relatives and/or friends to meet your loved one with Parkinson's or a Parkinsonism-plus condition such as mine.  -- Patient-Online


Tuesday, January 24, 2017

Artwork with Climbing Theme by Stephen Brooks

Habakkuk 3:19 
"The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights."

I am so proud to display my new header art work.  My son Stephen is a professional artist with a bachelor's degree from California State University in Fine Arts.  He is also a full-time substitute teacher who serves in the San Luis Obispo community in public schools, K-12 grades. Formerly, he taught in Riverside County public schools districts.  His serious interests include rock climbing on the mountains and peaks of the western United States, along with biking, running and camping.  He designs, draws and sells art on the internet that represents his love of the mountains and his climbing pursuits.

Stephen was raised camping and hiking with his family on annual vacations in the southland (Not that I take credit for the rock climbing-- I am terrified of those kinds of heights!).  Mt. Palomar State Park and Joshua Tree National Park fill a special place in his heart.  In addition, he grew up beneath Box Springs Mountain in Moreno Valley, California and has had many adventures roaming its peaks that shadowed our house.

I asked Stephen to use the concept of a long hike, an arduous climb, the pursuit of heights beyond our ability to act, as a metaphor of the struggle that journeying with Parkinsonism-Plus brings.  Those with Atypical Parkinsonian diseases and idiopathic Parkinson's know that strength, fitness of mind and body, courage, faith and stamina are all required resources to take on the "trip".  Reaching the top, overcoming to make the most of life with a neurodegenerative brain disease, is possible with these attributes, and the love and support of loved ones and friends.

Stephen's design, drawing, composition and color scheme all came out of this theme and are represented in his original and exceptional header print that I am honored to post permanently on the top of my webpages.  I hope that you enjoy it!  Great job son!

To see Stephen's work and various professional pieces that he markets on the web, go to:

Hem and Haw - Artwork by Stephen Brooks

For CLIMBING online magazine interview with Stephen Brooks and his artwork featured (see no. 5), visit:

Eight Climbing Artists You Should Know -- Stephen #5


Please give us your feedback and let us know if you like our new design! -- Patient-Online

Monday, January 16, 2017

Pastor's Early Influence Goes On Years Later

If you have known me long, or read my book, I Will Go On: Living with a Movement Disorder, you may recall me telling stories about a man named, Jay Bartow.  Jay was my earliest minister in my home church, Lakewood First Presbyterian Church.  Pastor Jay, as we affectionately called him, was the most influential friend and Pastor I can remember in my development as I transitioned from high school to early adult.  Jay led me to understand a deeper walk with God in Christ and taught me so many things about life.  He shares a number of my most important interests, including the writings of C.S. Lewis, camping, trout fishing, social justice, sports and, of course, Christian life.  

I am so grateful to Jay and his wife Gail for being there for me and all of my friends in our youth group in Long Beach.  We were fortunate and thrilled to have a special visit in our home with the Bartows last week.  It was a time of sharing, laughter and prayer.  

Subsequent to their visit, Pastor Jay preached a sermon as the retired Pastor of his church where he served for 40 years.  I am posting it here, in hopes you will read it and gain some insight to the blessing Jay was to me and my whole family.  My boys know camping, fishing, a Christian upbringing and many different values that we had in our home while they were growing up due to Jay's influence in my life.  Thank you to Rev. Jay Bartow for allowing me to share his sermon in this written form!
 -- Patient-Online
First Presbyterian Church of Monterey, CA

Light into a Darkened World
Jan. 15, 2017
Jay Bartow, Pastor Emeritus
First Presbyterian Church of Monterey, California



Texts: Isaiah 49:1-7; John 1:29-42

Every now and then we ask or are asked a question that literally changes our life.  Can you remember the day you asked or were asked, “Will you marry me?”  I can.  And the “yes” that I heard changed my life for good. I mean that literally. A cascade of good things have flowed into my life since that day.  We just celebrated fifty years of marriage and cherish my life with Gail more each day.

Another question that changed my life was asked of me in the Student Union at UCLA in September of 1962.  A fellow student asked if I would take a short survey of questions, and my car pool ride hadn’t arrived yet so I said, “Okay.”  At the close of the survey he thanked me for my time and asked one final question which I think I can remember verbatim: “Eighty five per cent of the collegians who have taken this survey have indicated a desire to deepen their spiritual life. Would you count yourself among them?”  I didn’t think too long about it before I said, “Yes.”

From that response came an invitation to meet again after reading a magazine that this student presented to me.  The magazine was a compilation of testimonies of collegians who had found meaning in their life through a relationship with Jesus Christ.  As I met with my new friend, John, the next Friday, we continued our conversation and he asked if I would like to read the Gospels with him. Since I had never read the Bible I thought it a good idea for me to become acquainted with this literature that has been so influential to the development of our civilization.

I was captivated when I began to read the words and ways of Jesus. I entered college an idealistic agnostic with a major International Relations, hoping to become a diplomat and to work for a more just and peaceful world. What Jesus said and did spoke so profoundly to the dilemmas facing our world that I came to conclude that his person and message was the best curriculum I could study in the pursuit of my goal.

Today’s text from John describes two incidents in which John the Baptizer speaks to his disciples about Jesus.  In verses 26-27 of John 1 we hear John say, “I baptize with water. Among you stands one whom you do not know, the one who is coming after me; I am not worthy to untie his sandal.”

The next day John sees Jesus coming and says, “Here is the Lamb of God who takes away the sin of the world. This is he of whom I said, ‘After me comes a man who ranks ahead of me because he was before me.’ I myself did not know him; but I came baptizing with water for this reason, that he might be revealed to Israel.”

That mysterious phrase, Lamb of God, is found nowhere else in the Bible. John is unique in using it, and de does so twice. Scholars have debated the possible meaning of the phrase, but I agree with the majority who believe it is a reference to the Passover sacrifice of a lamb each year during the most important holy day for the Jews. The sacrifice was offered to atone for the sins of the people.

Lambs are not particularly noble or powerful animals, but Israel was instructed to offer lambs without blemish in payment for their sins.  The fascinating thing to note here is that John does not limit the efficacy of the sacrifice to the Jewish people, but says the Lamb of God takes away the sin of the world. 

That phrase has been tumbling in my mind for the ten days since I gladly accepted my pastor’s invitation to preach this weekend as he and pastor Katie are at Calvin Crest with many others from our church. 

The sin of the world! Wow! That boggles my mind. That is a weight beyond computing. Even a cursory knowledge of history shows us a sad chronicle of violence, prejudice, malice and mayhem that brings a sensitive soul to tears.

I remember lying in bed one morning and my father lying down next to me to share one of those tender moments that lend such strength to children. I asked him, a veteran of World War II in the Pacific Theater, “Dad, why are there wars?” He didn’t have a ready answer, but as we pondered this painful question I sensed that he shared with me a desire to work to end war, and that no doubt was one of the seeds that led me to want to be a diplomat.

The Greek word translate “sin” which John uses is hamartia and is a term used in archery having to do with missing the mark.  When Jesus was asked which commandment was the first of all he replied: “You shall love the Lord your God with all your heart, and with all your soul, and with all your mind, and with all your strength. And the second is this, ‘You shall love your neighbor as yourself.’ There is no commandment greater than these.” (Mark 12:29-30)  That is the succinct definition of the target or goal of living. 

Any honest person has to admit that he or she does not always hit that target, and when we look at history we see the misses writ large.  God sends Jesus to wipe away our misses and to redirect our lives in ways that reflect love of God and neighbor.

When two of John’s disciples approach Jesus, curious to learn more about this mysterious figure who is God’s Lamb, Jesus asks them, “What are you looking for?” They reply, “Rabbi, where are you staying?” A question followed by a question, but the upshot is they want to be with Jesus, they want to hang out with him. And he graciously says, “Come and see.”  And that changed their lives and changed the life of the world, because those first followers reached out to others who in turn reached out to others and so on down through the centuries to where you and I connected with this same drama.  

Who is this mysterious figure Jesus of Nazareth? How could he possibly take away the sin of the world?  Come and see. Apprentice yourself to him. Take him up on his offer which my friend Eugene Peterson so beautifully translates from Matthew 11:28-30.  “Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.” (Mt. 11:28-30 The Message)

How does that sound to you? It sounds like a great offer to me: learn the unforced rhythms of grace, learn to live freely and lightly. And since I first apprenticed myself to Jesus I have found no small measure of truth to that offer. His grace has enabled me to relax inside my own skin to a degree greater than I could have on my own. His forgiveness has freed me to do and dare in the confidence that if I stumble and fail he is ready to pick me up, help me dust myself off, and try again.

You ask, how does one hang out with Jesus since he is not physically present on earth? It is true that he is not present as he was those brief years in Palestine, but he promised to baptize his followers with his Spirit, to come again to them after he physically departed. And when you find yourself reaching out to others in love, giving of yourself and substance because you want to and not because you have to, you begin to realize that his Spirit is at work in you and in the world.  

Paul also reminds us that his followers are the body of Christ, and individually members of it (1 Cor. 12:27).  We see evidence of Christ at work in the world through his followers. Many of the world’s finest universities and hospitals were begun and sustained by ardent followers of Jesus: Harvard, Yale, Princeton, Columbia Presbyterian Medical Center to name just a few of hundreds of institutions inspired by the person and message of Jesus. 

Many of the best schools and hospitals in Africa. Latin America and Asia and Oceania, were likewise begun out of similar impulse.  This Friday I fly with a team of eleven others to Cuba to help install a water purification system and do health and hygiene education in a church in the eastern part of the island near Santiago. Every time I go on a trip like this I meet dedicated followers of Jesus who volunteer their time to learn how to build and run these systems and to educate their communities in proper hygiene and use of this water.  We work together with energy, enthusiasm, imagination and love.  And when children and parents no longer get sick by drinking unsafe water we thank God for the work we accomplished as partners.

The world-wide nature of the church has always inspired me and confirmed to me that the power of the good news is truly saving across all manner of cultural and linguistic barriers.

The passage we read from Isaiah 49 makes clear that God has a greater task for his servants than simply to restore the fortunes of their own nation. God proposes to make them a light to the nations that God’s salvation reach to the ends of the earth.  This world-wide calling and vision for God’s people was a new idea. Up till then each nation and cultural group had its distinctive deities who were primarily concerned with the welfare of their group, and not the world at large. Often they saw their deities and opposed to others whom they saw as enemies. 

Judaism and Christianity, which grew out of it, believe in a God who desires that the whole world experience God’s Shalom, a word that means harmony and wholeness and fullness of life. Salvation is not just a ticket to another world when we die, it is entry into fullness of life here and now and forever more. That is why schools and hospitals and proper nutrition and potable water and honest and just governance have always been part of the mission of Christ’s followers.

Many of you may not have the inclination or opportunity to go abroad to share in the work of Christ, though you certainly facilitate it through your gifts and prayers. But think of your world, your family and friends and co-workers and neighbors.  All of us know persons who are battling darkness and doubt and fear and grief. How can be bring and be light to them? A card, a visit, a shared meal. Simply being present and listening to others attentively and with kindness channels hope and light to them. If you have been on the receiving end of such kindness you know this to be true.

Last week Gail and I visited family and friends in Southern California, and one visit in particular warmed my heart. My first call was to a church in Long Beach where I was pastor to students. Early on I visited several high schools to meet students on their own turf. One afternoon after school I met a young man named Dan Brooks who was practicing free throws, and we struck up a conversation as we shot baskets. It turned out that he sporadically attended the church where I worked and I invited him to our high school group which was just about to begin a weekly Bible discussion group. 

He was one of the first four to come, and the message of Christ connected with him and he began to invite others, and soon we had thirty-five students coming and seeing, to borrow the language of John’s Gospel. And what they saw was the Spirit of Christ bringing hope and purpose and life to their fellow students.  

Four and half years later I was called here to Monterey, but in the intervening years good things were happening in Dan’s life and the lives of many others in that group. He worked as a youth pastor for a while and then as a public school teacher at the elementary level. He had a special charisma and touch with children and their parents. Later he worked his way into administration and personnel management in one of the top positions of a district. He and his wife raised three sons who are all doing well. But then Dan began to notice some physical problems which turned out to be the first stages of a Parkinsons-like illness which has cut short his work career.

But that doesn’t stop Dan from serving and loving others. He has written a memoir and launched a blog titled wewillgoon.com. And that is what he does. On Thursdays he sings at a nearby convalescent hospital. That he gets there slowly and with a walker tells them it isn’t easy, but he does it because he knows his visits bring some light to the residents there.  He has made them part of his world. 

At Dan’s home I noticed a copy of Petersons The Message that he had received this Christmas. When he reads that passage I cited earlier where Jesus says,  “Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly,” I am certain he will say a loud amen!

And so can you if you will dare to come and see who Jesus is. If you want to explore how to begin that journey I will be up front here in the chancel after the service and will be glad to answer your questions as my friend John so patiently did for me my freshman year of college.-- All Rights Reserved Used by Permission of Rev. Jay Bartow 2017


Monday, January 9, 2017

San Diego Choir for Parkinson's Patients; M. Streep Speaks Up for Disabilities

I couldn't help my excitement to receive a link from close friends about a Choir in the San Diego area for Parkinon's Patients.  You might want to go and read the whole article here:  Parkinson's Patient Choir.  It has been shown that the disabling effects of Parkinson's Disease, and other Parkinsonism-Plus conditions such as my diagnosis, include vocal difficulties known as dysarthria.  Singing is a very beneficial therapy for vocal issues caused by a degenerative brain disease.  A speech and language therapist started the inaugural choir for Parkinson's sufferers known as the Tremble Clefs in Scottsdale, Arizona in 1994.  My Uncle Ned Brooks, who was a Parkinson's patient who passed due away early in the last decade due to its complications, was in a choir for PD patients in Scottsdale at that same time, so I am confident that he was likely in that very group!  Thank you to my friends Lori Copeland and Marlene Fisher for sharing this information with us!

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II Corinthians 12:10 
Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong.

I couldn't help notice the story about Meryl Streep gracefully speaking about President Trump's ungracious physical and verbal mockery of a journalist he came across on the campaign trail.  The New York Times reporter, Serge Kovaleski, has arthrogryposis, a congenital condition affecting the joints. Arguably one the greatest screen actors in the last several decades, Ms. Streep spoke gracefully and articulately about the truth, stating that this was insulting to her and many others.



Trump didn't wait long to tweet that this had never occured, which is hard to stomach given the number of times disabled people such as this man, myself and many friends of ours, had to watch the newsreel showing Donald Trump defensively depicting this fellow in a mockingly insulting manner.  He claims it didn't happen.  You decide:


I do not have sympathy for Trump or those who voted for him if they claim that "Hollywood-types" are always attacking the lack of politcal correct-ness in society. PLEASE!  Don't insult the intelligence of those with the neuromuscular/skeletal disease that this reporter suffers from, or those of us with Parkinson's or Parkinsonsonian disorders that have very similar involuntary movements.  Donald Trump is the man with all the power and an opportunity to shed light on the struggles of American citizens.  When will he begin to be the President for all the people?  If he is insulted that some are offended and this results in his complete denial of reality, we have more of an issue than a serious breech of proper standards of courtesy and respect.

I look to my Presidents-- e.g., George W. Bush, Barack Obama and now President Elect Donald Trump-- to be a champion for awareness of Parkinson's, MSA, PSP, FTD and CBD, among many other conditions.  He is our leader and should represent all Americans, even those of us who have movements and postures of our limbs and bodies that may not be easy to look upon.  We deserve that much respect.  Lying about it is just beyond disappointing and hurtful-- it is despicable.

Please put down the Twitter and start reading about national security and demonstrating faith in the good people of our US government that are going to be aiding you in your efforts and maintaining your safety and well-being.

I believe in the office of the President and want to give you the respect and honor that is due your victory and your position.  Would you in turn please honor those of us with physical disabilities?
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Romans 5:3 
And not only so, but we glory in tribulations also: knowing that tribulation worketh patience.

Thanks for reading and supporting! -- Dan Brooks, Ed.D.