Davis Phinney Foundation, Parkinson's Disease, Parkinson's exercise, Support Groups, Uncategorized

Essential PD Communities

I owe Tim Hague Sr. an enormous thank you. The Canadian Parkinson’s advocate/educator/motivator helped me rethink my relationship with the various communities in my life.

Hague was a featured speaker at the Davis Phinney Foundation’s Victory Summit last week in Punta Gorda. He captivated the more than 800 Parkies and friends with perseverance stories about winning the first Great Amazing Race Canada with son Tim Jr.

Their reward was $250,000 cash, plus automobiles and free air travel. The perseverance required to win had everything to do with Tim’s PD-related memory and organizing challenges.

To hear Tim tell his story, go to http://www.timsr.ca/watch-tim-speak/

Tim often referred to the communities in his life: family, his hometown Winnipeg, fellow Parkies, his health care team.

He got me to thinking about the communities in my life: my immediate and extended family; PD SELFers; Rock Steady Boxing compatriots; PD support group members; fellow Florida newspaper editors; the golf group I once belonged to; college friends; high school friends; journalists I worked with at three Carolinas newspapers. The list goes on and on.

Each community commands my attention, requires nourishment and provides me support in large and small ways. I count on them to help fuel my perseverance in pushing back at my Parkinson’s condition.

Davis Phinney Foundation is also about communities and individuals in those communities who serve Parkies. The foundation’s primary mission is to salute people who persevere with their PD and serve their communities. Until Friday, I had not understood how Davis Phinney stands apart from other PD organizations in this way.

I salute the foundation and their speakers, such as Tim, for the large contribution they are making to the lives of those of us with Parkinson’s.

 

 

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Parkinson's Disease, Research, Uncategorized

How my post won, but didn’t, a $2,500 prize

January 12 was a strenuous day. After helping facilitate Module 4 of PD SELF —the groundbreaking personal leadership program of the Parkinson’s Foundation, PF for short—I was wasted and ready for a Sam Adams Pumpkin beer…..or two.

Come 2:00 PM, when I finally sat with my Sam to check email,textito-2500-award what did my tired eyes spy but a message from PF.

Here’s an edited version of that eye-popping email: “I have good news for you —remember when you helped us by writing a post (for a contest)? It turns out PF won the most liked post of the year (yours) award, which means we get the sum of $2,500.”

I asked myself who is the “we” getting the $2,500? Posing that question publicly, however, would be very bad form.

I imagine the whispers at HQ.  “He wants what? To take money for himself that we would use for research to find a cure for PD? Come on man! Get real.”

Brain Lightning……….Write a tongue-in-cheek email to new PF leader John Lear implicitly asking the money question. Have it coming to Lear from two top aides.

Pure genius………. Worthy of my chosen nom-de-plume, “The Wily Old Editor.” So it was—a practical joker’s delight.

“Dear John:

“Remember that passionate and sometimes difficult to manage PAIR (Patient Advocate) in Tampa whom we told you about? The guy who blogs at www.shufflingeditor.com.

“Turns out the dude actually can write. He won us a $2,500 prize…… for  contributing to a commercial blog about Moving Day. It was the most liked post of the year. Since the money is ours, consider sending him an “Atta boy” note as his consolation prize.

‘He blusters but is a sucker for sentimentality.”

The  connoisseurs’ email was sent Jan. 12.

To date no response. Nada.

Swing-and-a-miss, it would seem.

Anyway, here’s the version of the $2,500 column that appeared in the late Tampa Tribune and on this blog in April 2016.


MY PARKINSON’S CRASH COURSE

I wasn’t ready for a crash course in neurology that day two years ago. I was enjoying semi-retirement, assuming my medical writing days were far behind me. But then the doctor said, “You have Parkinson’s disease.”

Ever since, I have been immersed in Parkinson’s 101: what it means to live with a chronic neurological disease.

This month is Parkinson’s Awareness Month. Accordingly, I think even more about the 5,000 people in the U.S. who will also hear those words this month.

What do I wish I had known when I was diagnosed?

  • It’s a snowflake disease.Just like a snowflake, each of us is unique and so is our Parkinson’s. Do not assume your disease will look like someone else’s.
  • Some symptoms are invisible.Because many of us associate Parkinson’s with movement symptoms, we may ignore signs of depression, fatigue, constipation, or sleep problems (especially acting out nightmares). In recent years, the medical field has recognized that such symptoms are part of the disease. If you experience them, tell your doctor so they can be diagnosed and treated for what they really represent.
  • A Parkinson’s specialist can help.Most of us see a general neurologist for our care, without realizing we might benefit from seeing a movement disorder specialist. Those neurologists, who have undergone two years of additional training, can help us to better manage the disease and stay current on research and clinical trials.
  • Staying active is essential. Parkinson’s may affect our movement, but staying active can help in the long run. Research shows that intensive, sustained exercise (such as boxing, hot yoga, interval cycling} can ease symptoms and combat fatigue. And that regular daily activity (going for walks, doing the laundry) can help improve life with Parkinson’s.
  • We can benefit from complementary care. In addition to medications, we can benefit from physical, speech and occupational therapy and the knowledge of nutritionists and psychotherapists. Putting together a care team of these professionals early on can pay off for years to come. But due to the fragmentation of PD care delivery; it takes effort on your part to assemble that team.
  • All support groups not created equal. Support groups have different constituencies (young/elderly onset—newly diagnosed), different energy levels, different ambitions and agendas. Shop widely before you choose.
  • There is a lack of localized information. Patients want close-to-home answers. Where do I locate the physical therapy that doctors often suggest? How do I find a personal trainer who specializes in PD? Who can help me make my home safe from falls? Where do I enroll in recommended tai chi, spinning or boxing classes? In most locales, there is no one place to find answers to those and dozens more local questions. National PD foundations offer effective national advice but can only do so much at the granular, local level.
  • We can live well. Most importantly, I learned it is not only possible to corral the disease but essential to do so. Never, never give in to the disease or lose hope. Cognitive decline and dementia are worrisome (but not inevitable) accomplices to PD neuromuscular difficulties. Find your passions. Mine are advocating for research, raising awareness and sharing validated information.

Also remember that you are not are not alone. There are 1 million of us nationwide. Groups such as the Parkinson’s Disease Foundation and the National Parkinson Foundation are available to support us. Contact them to find information and resources. Together, we cannot only live well with Parkinson’s, one day we can end it.

 

 

Must Read, Uncategorized

Humanizing Jesus

manger
Fellow Parkies and other Shuffling Editor readers:

I found this  gem of an essay particularly moving on Christmas Day. It underlines the deepening spirituality  that the PD journey often brings. It certainly has done that for me.  I hope you enjoy it as much as I did.

A very Merry Christmas,

Gil Thelen, The Shuffling Editor 

http://www.nytimes.com/2016/12/23/opinion/humanizing-jesus.html?emc=edit_th_20161224&nl=todaysheadlines&nlid=52114048&_r=0

By Peter Wehner

Early in my Christian pilgrimage, as a young man struggling to understand the implications of a story I had only a surface knowledge of, I stumbled onto a theological insight. For followers of Jesus, salvation was based not on his life so much as his death. Jesus could have been incarnated as a man and been crucified within days. That’s all that was needed for his death to serve as an atonement, but that’s not what happened. God clearly wanted to instruct us about how we should live in this life, too. He became not just the author of the human drama but an actor in it.

According to the Christian Scriptures, Jesus had a life story — born in a manger in Bethlehem, later moving to Nazareth, and dying in his 30s, just outside Jerusalem. The fact that we’re so familiar with the story has inured us to just how jarring and unexpected it was. God came to earth “not in a raging whirlwind nor in a devouring fire,” in the words of Philip Yancey, author of “The Jesus I Never Knew,” but in humility, without power or wealth, in a world marked by strife and terror.

Jesus spent his infancy in Egypt as a refugee, Mr. Yancey points out, and the circumstances of his birth raised the specter of scandal. His life, then, was a profoundly human one, involving work and rest, friendships and betrayals, delight and sorrow. This has deep implications for how Christians should understand and approach life.

For one thing, the Incarnation dignifies the everyday. There has been a temptation throughout Christian history to denigrate the things of this world, from material comforts to the human body, viewing them as lowly and tainted. But this concept is at odds with what Jesus’ life taught, which is that while worldly things can be corrupted, they can also be elevated and sanctified.

Consider that Jesus was incarnated in a human body. He was a child in need of care and protection. He was a carpenter, a craftsman who worked creatively with his hands. His first miracle was at the wedding in Cana, where he transformed water into wine. There was joy and purpose to be found in the commonplace. The Incarnation also bestowed worth on people considered contemptible, unessential and valueless — “the least of these,” as Jesus put it.

Indeed, one of the indictments of him by the religious authorities of his day was that he was a “friend of sinners.” Jesus’ love was “undiscriminating and inclusive,” according to the writer Garry Wills, “not gradated and exclusive.” He spent most of his time with those who were forsaken, poor, powerless and considered unclean. In a patriarchal society, Jesus gave women an honored place. He not only associated with them, but they were among his disciples, the object of his public praise, the first people he spoke to after his resurrection.

The most intense confrontations Jesus had weren’t with those with loose morals but with religious leaders, the upholders of the “holiness code” whom he called out for their arrogance, hypocrisy and lack of mercy. In the Temple courts, Jesus told the chief priests, “I tell you the truth, the tax collectors and the prostitutes are entering the kingdom of God ahead of you.” In the words of Professor Wills, “He walks through social barriers and taboos as if they were cobwebs.”

The Incarnation also underscores the importance of relationships, and particularly friendships. The Rev. James Forsyth, the winsome and gifted pastor of McLean Presbyterian Church in Virginia, which my family attends, says friendship is not a luxury; it is at the very essence of who we are. The three persons of the Christian Godhead — Father, Son and Holy Spirit — speak to the centrality of community. When we are in a friendship, according to Mr. Forsyth, we are “participating in something divine.” That is, fellowship and friendship were present in the Trinity and are therefore of immense worth to us. I’ve experienced that in my own life, when friends served as God’s proxies, dispensing grace I could not receive in solitude.

In some rather remarkable verses in the New Testament, Jesus told his disciples: “I no longer call you servants, because a servant does not know his master’s business. Instead, I have called you friends, for everything that I learned from my Father I have made known to you.” God’s emissary on earth had a core group of intimate friends — Peter, James, John and perhaps his most faithful friend, Mary of Magdala. These are people Jesus confided in, relied on, celebrated with and mourned with. He not only praised friendship; he modeled it. It’s difficult for us now to appreciate the shock it was considered then — that the “image of the invisible God,” in the words of St. Paul, not only didn’t compromise his divinity by taking on human flesh, he actually found succor in human relationships.

The Incarnation is also evidence that God is not an impersonal, indifferent deity. Instead of maintaining a divine distance from life’s experiences, including its grief and hardship, Jesus shared in them. This can be seen in the moving events surrounding the death of Lazarus, the brother of Martha and Mary of Bethany. Here is the account from the Gospel of John:

When Mary reached the place where Jesus was and saw him, she fell at his feet and said, “Lord, if you had been here, my brother would not have died.” When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled. “Where have you laid him?” he asked. “Come and see, Lord,” they replied. Jesus wept. Then the Jews said, “See how he loved him!”

In the account in John, Jesus raises Lazarus from the dead. The point here, though, is that Jesus not only had sympathy with those who were suffering but experienced grief to the point of tears. Contrary to the “health and wealth” gospel, which argues that God will deliver prosperity to those who have faith in him, Christianity does not promise an end to suffering even among the most faithful, at least not yet. But it does promise that God can bestow mercy amid our struggles, that in time he can repair the broken areas of our lives.

Jesus was not a systematic theologian; that work was left largely to St. Paul and others. While he certainly argued for the importance of righteousness, Jesus was far less concerned about rules than he was about relationships and reconciliation — with one another and with God. For some of us, Christmas is a reminder that while moral rules can be issued on stone tablets, grace and redemption are finally and fully found in a story of love, when the divine became human. I didn’t enter Jesus’ world; he entered mine.

Peter Wehner, a senior fellow at the Ethics and Public Policy Center, served in the last three Republican administrations and is a contributing opinion writer.