Yesterday, I went live and gave a mini-concert from my couch. I have posted it below this should update you on the latest and my medical challenges, while I hopefully inspire and entertain you. Please take a few minutes to give it a listen, if possible. Thank you so much!
I depend my DBS system (Deep Brain Stimulator) greatly. It smooths out motor movement to some degree and helps preserve urinary function, swallowing mechanism, and keeps my body from being rigid and in pain.
Last week I started noticing I could no longer stand up straight and my joints and muscles were aching and burning. I felt as though my head was spinning.
If you have read my book, FURTHER ALONG, you know where the brain implants are located and the purpose they serve. They generator in my chest is connected to these brain implants.
In addition to my very curved, down facing posture, I was struggling to make my bladder muscles work and urinating has become very painful and, at times, nearly impossible. My voice has been weak.
Then it occurred to Karrie and I that we needed to check my generator power. We have a hand held device that we place over my generator, located beneath the skin on my upper chest. Karrie placed this over my generator and it indicated that it was no longer functional.
We are in the process of working with my movement disorder neurologist to get surgery scheduled as soon as it is possible. This needs to be done by a neurosurgeon.
In the meantime, I will just have to find a way not to let it depress me as the change or lack of stimulation can severely affect my basal ganglia function. This part of my brain is located in my midbrain, and can play havoc with my sense of well being. Also, the stimulator going out has caused intractable hiccups that have continuously returned for 3 days straight. They are very difficult to stop and the constant jerking of my abdomen is painful for my stomach G-tube.
I would appreciate your thoughts and prayers as they will be of great help!
I have a link to the playlist for my album A LONG TIME COMIN' below. Go there to hear all the tracks and you can save them for free. If you send me a messenger message, I can get you a hard copy. I have a few. I mainly wanted the music to be preserved and available online. As I progress in my illness, I am losing my abilities. This way I will be able to share the good news, always. Thanks!!
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| Susan Edwards 2023 - Used by Permission |
In recent posts I have filled you in on all that is going on with my brain and body. Both atypical parkinsonism, a tracheostomy, feeding tube and now kidney cancer have combined to make life discouraging at times. So much to contend with which requires me to remain home 95% of the time, confinement to a wheelchair a good portion of my day, eating liquid food through a tube in my stomach, and sleeping with my trach tube attached to a ventilator to keep me breathing while sleeping each night are all part of these realities. How do I make the most of the life I still have?
There is so much to live for and I am ambitious to learn and accomplish things. I still have my music, writing, online groups and being available to friends and family to help in conversation and encouragement, when needed, which are all important factors in finding motivation for pushing on. Let me tell you a bit about my friend who painted the art piece shown above.
Susan Edwards is a close friend I met in our high school youth group. She is married to my lifelong friend Gary Edwards. I met Gary in junior high school youth class at our church in Long Beach in the 60's. Susan suffers from nerve impingement from spinal stenosis in her back, and in her cervical area, particularly. This has made Susan's existence limited physically due to a lack of feeling in her hands and difficulty coordinating her steps in order to walk with proper balance and strength. What does Susan do with this life that is is limited by constraints on movement and the ability to get out of the house and experience things most of us take for granted?
Susan lives a life focused on her Christian faith. She spends a lot time praying for those she loves and whenever given the opportunity she devotes herself to artistic expression. Her paintings are often reflections of the inspiration she gains through faith that connects to reading the Bible and prayer.
The above painting is so illustrative and brings solace to me as I look at it. Susan has her explanation of what this beautiful painting reflects in her thoughts and resulting intended metaphors. My response to it when she shared it with me-- by way of encouragement when I was going through various surgeries on my tracheotomy and kidney cancer-- was that it represented an open gate leading to the rest God offers to all of us through His grace.
I see the familiar architecture of the California missions, emulated throughout our communities in schools, college buildings, hospitals and churches, among other structures. This path leads to restoration and hope. You may see other ideas in this picture. I love the way the courtyard is seen through the realistic wrought iron gate that is symbolically inviting us to an available place of graceful contemplation.
Susan is an example of finding purpose in the midst of suffering. I too have a daily struggle to find such purposes. For me it is connecting with my family-- my dear wife, our three marvelous sons, our supportive daughters-in-law, and our six grandchildren-- who brighten my skies so frequently. Also, I have three groups that meet online through Zoom, regularly. Two are for specific diagnoses that I have-- Corticobasal Syndrome and Multiple System Atrophy. These give me support, but they also give me a chance to encourage and provide caregivers and patients another individual willing to share his own difficulties and solutions.
The third group is our weekly Bible study with a church in Monterey, whose pastor meets with us weekly and we read through and study books of the Bible. Those hour-long discussions, and times of bonding as brothers, provide me with a point of contact and an opportunity to give and receive. These online groups are irreplaceable in the big picture that is my life going forward.
Music continues to be paramount for me, though the hole in my airway has changed my ability to sing, something that was always central to my joy in performing for others. Now, I have the ability to sing on a limited basis by putting a cap on my trach opening called a Passy Muir Valve. This valve allows air in, but but not out, through a membrane in the opening of the cap. This then lets the air I take in travel up through my vocal chords for those times I want to make a video singing for my audience on YouTube. Sure, my voice is older and limited by the partial paralysis of my vocal chords, but I still have a drive to sing, hopefully bringing hope and enjoyment to my viewers, who are so faithful.
This decreased ability to sing, has caused me to pursue instrumental improvement. While I once had a melding of my voice and guitar that inseparably allowed me to send out a message through song, this is no longer the case. I could never see the guitar, that I began to play 61 years ago as a child-- once being an integral part of my music for the purpose of weaving rhythm and harmony in partnership with my voice-- becoming the point in itself, instrumentally.
Today my mandolins and guitars, though my coordination from my neurological disease has lessened my abilities, have become nearly the entirety of my musical expression. What I work on now is chord melody, which is defined for me as playing a tune while also playing the chords on the same instrument at the same moment. This produces a complete composition and performance as I imagine the words I would be singing in to the tune.
Here is an example:
Since my last post, I have received a number of comforting and uplifting comments that we have enjoyed reading. Thank you for your responses. I read each one and am grateful for the sincere words of support, prayers, appreciation and love that are represented in your expressions.
I wanted to highlight a friend whose poems I have posted in the past. He writes to inspire and remind others of the power that comes from faith and prayer in walking a difficult path. His name is Gary Edwards, whom I have know since I was 13 and he 14. We met in Sunday school class for junior high students. We went on to have a lifelong friendship. Through high school and beyond into our late teens we often performed folk-rock music together centered around the gospel message. We always enjoyed sharing music and visiting various youth events, churches and skilled nursing homes to share our songs.
Gary's wife Susan, was also from our local church, coming later in the high school years. She too is an artist, of the visual type, and paints wonderfully thoughtful and inspiring works that are displayed in their Dallas area home. In addition, she paints on custom greeting cards that she sends to lift others hearts.
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| Gary Edwards Calling to Say Hi |
Gary has been in close contact with me the last 10 years, and during my medical struggles has been one to share an encouraging word to build up my sense of hope and trust in God's strength in my weakest times. As a way to communicate those thoughts with me, he has written some poems that I would like to post for you to enjoy and appreciate. Maybe you will find them a blessing for you, too, as you read and contemplate their messages.
This is one that Gary wrote for my 68th birthday, as I was in the midst of my cancer battle:
Fashioned by the Master
Fashioned by the master
With a stroke of his hand
Final touches of your potter
As you live at his command
Empowered for his service
The battles are for real
The molding has been accomplished
On his perfect potter's wheel
The color of your soul painted
In a thousand different ways
It won't be bright until you shine at night
And he fires on his glaze
Your body tells you one thing
Your hope of glory's real
The fragile clay has been hardened
So don't react to what you feel
As you speak to your potter
As you say, "I don't have the faith,"
He will guide and hide you
In an overflow that's safe
His grace has empowered you
As the potter's kiln is done
His strength made perfect in weakness
This birthday battle is won.
A poem for Dan, from Jesus, through the hand of Gary
Happy Birthday
Here's another that Gary and Susan mailed to me in a greeting card. I had just had my kidney removed three days earlier.
Dan, Standing in Your Dad's Legacy
Dan, you are not like others in their plight,
Whose health problems burden them every night.
For in His life, God's grace takes hold,
And through His love, you're in his fold.
While fighting health battles O so long,
Your strength in weakness is His song,
With tender mercy, God sets you free,
Through Jesus Christ, your strength is He.
Many ailments affect body and mind,
But you a different road did find,
With every step, blessings you receive,
His grace your guide, and comfort believe.
Doctors' proclamations, like shadows cast,
But through his grace, you're free at last,
In his embrace, your spirit soars above,
His boundless grace, you truly love.
So let your heart be filled with gratitude,
For God's great mercy and His fortitude.
You've been given a journey all your own,
In his compassion, a new seed has grown.
So embrace the path before you laid,
For through His grace, your burdens fade,
Your dad's legacy, a strength you've gained,
With every victory, His glory is proclaimed.
In His eternal love, you'll find release,
No longer bound, In His perfect peace,
Rejoice, dear Dan, in this blessed call,
For in His hands, He gives you all...
By Gary Edwards and your Master Craftsman
Gary added:
"So we're not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There's far more here than meets the eye. The things we see now are here today gone tomorrow. But the things we can't see now will last forever."
2 Corinthians 4:16-18 The Message Bible
These poems are used by permission and are written by Gary L. Edwards.
My deepest gratitude to Gary and Susan for their friendship with Karrie and I, and for the love and care these poems represent. --Dan
Dear Friends, I know you may have been wondering why I have not written an entry in nearly two years. I have gone through so much, as we all do. This road is a tough and lonely one. The combination of multiple system atrophy and corticobasal syndrome are enough with the added challenges of the tracheostomy and feeding tube. The COVID 19 pandemic was a huge inconvenience for all of us, and for many, it meant the terrible loss of family members and friends. I found myself becoming quite inward and the progression of my disease, with the autonomic dysfunctions and increasing immobility, were weighing down my spirit. I became more and more convinced my days were getting shorter on this earth. When my lifelong friend, the Rev. Dr. Jay Bartow, who had been my pastor in high school, passed away in the winter of 2022, I was left with the feeling of great disappointment and sadness. Somehow, we had to find a way to go on. Thankfulness and looking for the good that can be found in each day are two avenues to pursue when times get darkest. You may relate to this kind of experience.
Then, in the early spring of 2023, my G-tube was creating problems in my stomach. It began to fester and I felt pain. Just the weight of it hanging from my abdomen was painful and I knew, once again, something was up with it. Karrie checked to see if I could get in to see my gastroenterologist, and the conclusion was that this couldn't wait. We were directed to go directly to the emergency room.
While there in the emergency room, the doctor was able to determine that my G-tube would need to be removed and replaced. A CT with contrast dye was conducted to get a view of the state of the balloon holding my feeding tube in place. From this imaging, the problem was understood and the tube was removed and replaced. The pain subsided and the doctor approached us to discuss the conclusions he had drawn. Then, the next shoe dropped. He said, "Some masses were observed in your left kidney and your liver. You should follow up and see what your doctor recommends for you to do next."
We made an appointment and it was determined by the gastroenterologist that I should have another CT scan of these masses. It was scheduled and conducted within the next month. The results were read and the gastroenterologist explained, "The liver mass is stable for now, and we will recheck it. This kidney mass is concerning for cancer." "I recommend you see your urologist right away."
We were able to get in to see the urologist within a few days and he reviewed the resulting scans on the computer. The mass had grown and his impression was definitive. "This is likely a cancerous mass and needs to be removed. It is buried deeply in the center of your left kidney and therefore it won't be possible to remove it by doing a partial nephrectomy." He indicated that the entire kidney would need to be removed. This procedure is called a radical nephrectomy.
I subsequently I had the surgery on June 13, 2023. All went well and required a 6-day stay in the critical care unit of the hospital. Special provisions had to be made for me due to my liquid G-tube feedings and the need to be hooked up to a ventilator each night as I slept (I sleep with a high tech ventilator each night at home as it is required to prevent sudden respiratory failure while sleeping). I was discharged the night before my 68th birthday. We received much support from our sons and their families. The guys, Daniel, Mark, and Stephen all spent time at the hospital. What a blessing they were! Karrie needed that support and it made all the difference. Karrie came each day from the beginning of visiting hours until they tossed her out at the end of the visitation time allowance.
The pathology report did come back and the conclusion was that the mass was indeed kidney cancer, stage 3, and that it had been removed with no spread apparent in the region. I was relieved that the margins appeared to be clear. Thanks be to God!
I returned to the urologist, who had conducted my surgery, and my staples were removed from the center-line of my abdomen. It became apparent fairly quickly that something wasn't right. Our urologist urged, "You will need to go to emergency directly. I need to get you into surgery today." My wound had opened up without the restraint of the staples and began to allow my intestines to protrude out of my body. This was undoubtedly the result of the much coughing I have to do on an ongoing basis to clear my trach opening that gets clogged with fluids. It was impossible to avoid the strain this coughing and clearing had put on my surgical wound. The condition of my open wound was more dangerous that I realized at the time, but I felt calm and had trust that God would guide my surgeon and the team to get things straightened out.
Karrie bears a great deal of responsibility. This was weighing heavily on her mind and her thought process "wheels were turning". She knew as she drove me to the emergency room that this was serious business! It didn't take more than 2-3 hours for me to be an operating room again. All of my insides and affected areas were washed with sterile water and antibiotics. My organs were rearranged, for a lack of a better way to describe it, and I was once again closed up. Special care was taken to get the area carefully stapled and sutured. I must give much credit to this wonderfully dedicated physician who took such care to be sure I did not get an infection or have another problem with the healing of this incision. I stayed in the hospital 2 more days.
Now, 7 weeks have passed and I have seen all the pain subside. The wound has healed well and I am feeling back to my normal "abnormal." Once again I am filled with gratitude for Karrie, who cared for me as any nurse would have so well. Our sons and their families were there between these two surgeries to celebrate my birthday all gathered around my bed. All 14 of us were together and the love was palpable! I can't help but be filled with gratitude for the goodness of our family and the professionalism of our doctors, hospital staff, home health nurses who visited and the physical therapists who provided exercise to get me to the point where I could get out of bed after a week at home.
At this point, I am going to need to be more conscious of my single right kidney. It will need to be babied and paid close attention to in order to keep its function effective and healthy. The cancer does not appear to be present for the time being. This too will be carefully monitored for a number of years. I feel confident that it is gone. Just added concerns to accompany those Karrie and I are contending with due to multiple system atrophy and corticobasal syndrome.
I have renewed interest in communicating and sharing those things I am able to through this blog. I intend to keep it up and I hope you will again be a regular reader. Please feel free to write to me below or to my email me at danstune@aol.com. I would love to hear from you and receive your questions and feedback. -- Dan
