Overcoming Challenges: Trach Tube Change and PEG Tube Rupture

Time to return to our blog and let you, my readers know what has been happening. As an atypical parkinsonism patient with MSA and CBD, I have several ongoing issues that need attention from medical professionals. I want to thank each of you for reading and providing support for Karrie and me. After our book FURTHER ALONG With Atypical Parkinsonism was published, we had a great first month or two of sales. Though the numbers haven't been updated for four weeks or so, at the end of August we had sold 271 printed books and another 30 Ebooks. I recently did a reprint, adding our sixth granddaughter's name to the story. She was born just following the publishing and with a few small errors to fix as you would find in any book, I took advantage of the opportunity to add her name! Our sixth grandchild, each of whom we are very proud! I recently encountered difficulty with my PEG tube as it had ruptured and created an infection in my stomach, causing some bleeding and pain. I had a procedure to replace it and it is showing signs of steady healing, though all discomfort is not alleviated to date. Soon, I will be in the hospital as an outpatient to have my trach tube replaced with a cuffed version, to begin using the ventilator with effectiveness. It will be inflated to use the vent, and when not it can be deflated to allow some use of my voice. I am a bit anxious, naturally, but expect that things will go well with the wonderful pulmonologist I have who is conducting the bronchoscopy and trach placement. My movement disorder specialist sees me every three months and maintains and adjusts my deep brain stimulation device. This enables better movement and allows me to use my walker to move around the house. Due to Covid-19 and the trach and feeding tube, we are limited to home literally almost every hour of every day. Not driving and having no place to go safely, we make the most of our home and our time together. We have hobbies and love spending quiet afternoons together more than ever. I am so thankful to have the person I love most in the world beside me every day. Karrie gives so much of herself caring for me and works hard with a positive, kind attitude. Thank you, Karrie! If you would like to purchase a book, you are encouraged to go to most online book sellers, including Amazon, Barnes and Noble, Walmart and many others. You will hopefully be encouraged in facing whatever challenges you are facing to walk in hope and faith. Thanks for reading, Dan

Purchase a softbound, hardback, or ebook: https://www.amazon.com/Further-Along-Parkinsonism-Dan-Brooks/dp/1087969670/ref=sr_1_1?crid=O9FSY9JMNWA9&dchild=1&keywords=further+along+dan+brooks&qid=1631984160&sprefix=further+along%2Caps%2C215&sr=8-1

Book to be Completed in August - FARTHER ALONG

 I have a publisher in place for our new book: Palmetto Publishing.  I have submitted the complete draft of the book.  We are working on the details and it is exciting to see it come together.  Karrie has done some extensive editing and advisement on the details of the accounts I have written in the book. Our sons, Mark, Stephen and Daniel are involved.  Daniel is writing the preface for me.  Stephen is designing the cover, while Mark is drawing two illustrations for the interior.  It is looking really good!  

The name has changed, Farther Along With Atypical Parkinsonism is likely the final title.  

Included will be all new writing not in my first book, I Will Go On.  I will discuss the emergency in January 2020 and the lifesaving measures taken to bring me back from near death.  I describe what it was like to be under heavy sedation nearly a week and my family wondering if I would be back with my ability to move and communicate.  Also, the process of transitioning to a tracheostomy and feeding tube are thoroughly covered and there are details few of you would know that I share.

Problems with the diagnostic process of a rare neurodegenerative disease are also a topic I cover.  The decision to have brain surgery and the resulting success are explained.

I think this book has the potential to be a benefit to patients, caregivers and all people contending with challenges that seem too big for one human being.  Faith and hope are the keys to finding your way through such trials.

I hope you are as excited as I am to see this in print in the coming months.  I expect a completion date to be announced for some time in August.  There will be paperback, hardback and e-book versions available on many book outlets including Amazon books. Thank you, again, for keep up with our blog.  -- Dan

PET Scan and Corticobasal Degeneration

I haven't been a regular blog writer this summer, to be sure!  I guess the teacher in me still sees the natural need for a break?  Sounds like a very nicely worded excuse!

Anyway, I was a principal and district office administrator, so I had a fairly conventional vacation schedule (very little :) the last 20 years of my career as a manager.

On the brain disease front, I am still working with our MDS (movement disorder specialist, neurologist) at the medical clinic to get a very specific diagnosis.  I continue to be considered, as I have been for 11 years, as having Parkinson's Plus, with MSA, PSP and CBD all showing symptoms in my case.  (Multiple System Atrophy, Progressive Supranuclear Palsy and Corticobasal Ganglionic Degeneration).

CBD is often referred to as CBS (Corticobasal Syndrome) during life and confirmed as a CBD after death.   CBS is under the umbrella of Parkinson's Plus, and more specifically, one of the Fronto Temporal Dementia's (FTD).  There are several categories under FTD, including PSP, CBS and Primary Progressive Aphasia (predominantly a severe language issue).

In my book, I WILL GO ON: LIVING WITH A MOVEMENT DISORDER, I discussed CBD, MSA and PSP, knowing that I had the potential for being defined has having one of the three.  I didn't know that 8 years after publishing that book that my diagnosis would be possibly redefined-- well that isn't the best way to express it-- further defined. My neurologist way back when said it was "so much more than Parkinson's Disease," and that was in 2006.  He thought that Shy Drager or PSP were likely, and later landed on Shy Drager and more specifically, Striatonigral Degeneration.  Then, in 2012, I had brain surgery and Deep Brain Stimulators were inserted in my brain to block faulty signals causing walking and shaking/jerking issues.

I have had a lot of benefit from the DBS system I have in my brain in two areas and also the generator place in my chest, connected to cables that send the electrical stimulation to the movement center of my brain.  Not many on this earth with Parkinson's Plus have had DBS, so I feel pretty special!

Now, with an outstanding Movement Disorder Specialist working with us, I have had a DAT scan which had very noticeable results confirming that I have a Parkinson's Plus Syndrome.  Now, our MDS  has ordered a PET, which will use radioactive isotope to track metabolism in my brain to determine the type of protein damage I have.  The proteins in MSA (alpha synuclein)  and PSP or CBD (tau) clump (MSA) or tangle (PSP, CBD).  The aggregation of these proteins causes brain degeneration and is incurable and irreversible.  Attempts are being made through research to develop methods that are hoped to recognize these degenerative diseases early and possibly arrest them in their progression, or even just slow them down.  Cures are a long way off, but we are not out of the fight because we care about future generations who could develop the same type of conditions. 

What I have is not genetic and is not communicable.  It is a disease that begins spontaneously or sporadically.  It is possibly caused by toxins in the environment, including workplace or dwelling.  The domino effect of the proteins folding brings about the loss of neurons that provide for the function of the body: everything from blood pressure regulation, breathing control, swallowing, eliminating, eye movements and gross motor function, to name several but not all of the disabling affects. 

I have lost abilities, and will continue to decline, but I am still here and loving this life!  There is so much going on and I have so much hope and enthusiasm for my family, faith and music.  I have so much I want to accomplish each and every day. 

I will post after the PET Scan to share what might be learned about the effects these degenerative processes have brought. I end with a scripture reference that once was the motto of my Christian band I played in with John Moffett and Dale Samuelson, "Changing Heart":

2 Corinthians 4:16-18 New International Version (NIV). Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 
 -- Patient-Online

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

Walking Is Increasingly Hard this Week

Note: Our friend Lori is home after a successful hip replacement surgery.  We pray that her recovery will be smooth and timely.  Our best to you and Pastor Brad!

Multiple System Atrophy is a syndrome which causes such a variety of issues that as a patient you will forget the difficulty of one serious symptom while several others have risen to the fore. I live with balance and walking/gait difficulty always, and have since this came on just over 10 years ago.  Due to blood pressure being low (orthostatic hypotension) makes it hard to rise and begin to stride because of either a grey out moment or weakness in muscles.  Once I going, my balance due to brain changes in the cerebellum contributes to the struggle to walk with much balance, and my pace is very slow due to parkinsonism as I attempt to go get the mail from the mailbox or take the trash to the garage.  Even with a cane or walker, it is a rocky road.

These last several days, it has been worse.  I am stooped over more and moving very slowly, with an exaggerated shuffling gait.  I went in the grocery store with my wife and found the size suggests a wheelchair rather than a walker next time.  I may get my next DBS adjustment and find that it brings improvement in this area.  It is hard to say, but often the electrical stimulation that is continuously flowing to both sides of my brain, when targeted to improve a symptom can actually do something close to that!  Always Hope,  Dan

Four Years Since Deep Brain Stimulation Surgery

It has been four years since I underwent DBS surgery.   Though I have Multiple System Atrophy, I was a good candidate as deemed by my doctors.  It has been successful and I have benefited from it. 

It was quite a challenge to face brain surgery and the possible complications, not to mention the range of outcomes from success to failure that may have resulted from it.  I am glad to say that it was a big success! 

Did it change the fact that I have a neurodegenerative disease that will continue to progress?  No, it did not cure me, but this medical simulator and two implants in my brain, helps me move better and reduces unwanted jerky movements and tremors.  Also, it seems to be lengthening my life.  What more could I ask for? 

-- Dan

Bernice Bowers -- Long Time Friend of CurePSP and Shydrager Support Group

I was deeply saddened to learn yesterday that Mrs. Bernice Bowers of Milford passed away in October 2015.  Somehow this news had slipped by without our knowing in the Shydrager/MSA forum.  Bernice was a long suffering caregiver and spouse of a wonderful man named Ken Bowers, a fire fighter who was treated for a Parkinson's Plus syndrome beginning in 1987, and was eventually diagnosed with Progressive Supranuclear Palsy in 1995. 

Ken was found to actually have had MSA posthumously, made clear by the study of his brain, which was generously donated by Bernice after his death in 2000.  Bernice remained active for over a decade in the Shydrager and PSP online forums.  She participated in the first few years of the Cure PSP monthly online support group facilitated by Gary Rose and Vera James.  I personally had much contact with Bernice online and she provided encouragement and friendship throughout the confusion and disappointment of the early years of this struggle for me.  

I am certain there were many others for whom Bernice did much of the same. Bernice was a positive individual with much faith and gave her time to church and community activities and caring for friends and family.  She developed breast cancer several years ago and it had been treated successfully.  This past year it returned and she passed as a result.  Bernice wrote a poem called, "The Golden Cord" which I published in my book I WILL GO ON, along with much of Kenneth and Bernice Bowers' story of his struggle with Multiple System Atrophy.  See her online obituary here. 

We are thankful for Bernice M. Bowers and her generous support for the patients and caregivers facing MSA, PSP, CBD, DLB and other Parkinson's Plus Syndromes. She was a true friend and advocate, and will be greatly missed.  Our sympathies and prayers are with her family and friends.    -- Dan