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

Nearing Completion of My Next Book --- FARTHER ON

Karrie and I are faithfully being safe, hoping for an end to COVID 19.

My friends and readers, 

The new book is getting near completion.  It won't be too long, page number wise.  But it feels right at just over 125 pages.  I have written about the ensuing years since the publication of the first, I WILL GO ON.  It was a chance for me to reflect on some of the changes that have taken place, such as the DBS surgery and the tracheostomy experience.  Also, I have had an opportunity to consider how I have truly lived on longer than would have been anticipated with a parkinsonian-plus condition such as mine.  I am excited to share it with all of you and I hope to be able to encourage others who are going through similar brain diseases or experiences with a tracheostomy or feeding tube.  I feel my little book will be an inspiration to others who are not seriously ill, as well.  It is a chance to share my personal insights that occurred to me during my near death experience and what I have struggled with subsequently.  Finally, the things these difficulties have helped me to gain are priceless and worth trying to put into words.

Karrie is going through my rough draft now, helping to edit and looking with what I hope is a critical eye for ways to improve my grammar and punctuation in the document I have been writing for most of a year on my MacBook.  I want her input on the content too, as my favorite editor.  She is excellent at this task!

Well, it is time to move on for today, so I just wanted to get that out there.  The book is coming this spring or summer, and I hope that you will help me spread the word.  It will likely be on Amazon by that time. 

Thanks for all you support and interest,  Dan

Replacing Trach with Cuffed Version

I am being scheduled to have my smooth trach tube replaced in mid March with a cuffed version.  This will allow me to be able to have a ventilator at night while I am sleeping. As a result of my brain degeneration, my diaphragm is not fully functional and has reduced my lung capacity.  This is progressive so the ventilator will ensure that when my body is slowed down during sleep that I continue to receive enough oxygen.  It has an inflatable ring inside my windpipe that will seal the trach so that I get a tight fit and 100% positive airflow.  That will mean I will have no speech during the night.  Karrie can deflate it for me in the morning so that I may speak.  Thanks for your prayers. If anyone has experience with this trach type, please write to encourage me in this process.  Thank you friends! 

Singing with A Passy Muir Valve

I have been working at playing music after my trach operation. Generally, I try to stick with just instrumental material because of the coughing that it causes.  Occasionally, I will be recording a vocal, such as this song I am posting today.  I am using the Passy Muir speaking valve.  This allows air in, but prevents it from exhaling thus pushing the air up through my vocal chords to produce sound.  These valves cannot be used with a cuffed trach, which is the type I had when I first had surgery.  Speaking with the cuff inflated made me silent and my family couldn’t hear me.  Once I had an uncuffed trach, I was able to speak and sing with the Passy Muir valve.  I hope you enjoy my song, written in 1974 but recorded this morning!  — Dan

 https://youtu.be/nwpbzffcGY0

Starting Book Number Two

It is time.  I have more stories to share and want to put them in a book.  Some interesting and painful things occurred in going to two physicians 10 years ago. I will write about them using fictitious names to avoid harming anyone, but rather to delineate the difficulty of being treated for a rare brain disease such  as I have. These did not include the specialists and Doctors I was diagnosed by originally or those I have today. Hard to believe the specialists I will write about were so clueless about how to respond to a patient in my situation.  These two are not from RMC or Loma Linda and I have spoken little publicly about their treatment of Karrie and I when we sought second and third opinions.

Also, much has occurred since I WILL GO ON was written and published in 2009.  I have had brain surgery with an extraordinary neurosurgeon, and a great new neurologist/movement disorder specialist at Loma Linda University.  Most importantly, to write about how early this year (2020) I nearly died in the emergency room and was saved by the quick thinking of my wife, Karrie, and wonderful doctors and medical staff at Parkview Community Hospital.  My experiences during my time in the hospital, and subsequently in the rehabilitation facility for 6 weeks,  followed by the time of adjusting to a new normal at home as Karrie and I adapted to the tracheostomy and PEG tube feeding are stories crying out to be written. 

“Farther On” is chosen grammatically speaking because “further” speaks of literal distance and “Farther” of metaphoric progress along a continuum.  Farther On is the sequel to I Will Go On: Living with a Movement Disorder, and I hope to complete and publish it early in 2021.  

More news about my writing progress to come.  Thanks for reading.  I will end with a relevant, and one of several favorite Scripture references. -- Dan

Philippians 3:13-14 "Forgetting what is behind and straining toward what is ahead,  I press on toward the goal to win the prize for which God has called me heavenward in Jesus Christ."

Home 7 weeks - Healing Progress During COVID-19

With Karrie, In December before my Tracheostomy Operation

I was in the hospital 11 days and in the nursing home 6 weeks.  I didn't know what to expect when I got home, though Karrie did so much to prepare the way for me.  Our home is set up so well, with a hospital bed, the IV pole for the feedings through my tube and a cart for the tracheostomy supplies.  Karrie is so organized!  We moved some guitars and mandolins out of our second bedroom closet and Karrie made a storage area for the boxes of liquid food, trach supplies and it amounts to a bunch of materials!

We are adjusting well.  Karrie has the trach care down, as well as the feeding process.  The trach requires an AM and PM servicing.  She does the following:

Morning:  removes debris from around the stoma (hole in my throat), removes and replaces the inner cannula, suctions the trachea as needed, and removes and replaces the trach tie that holds it on my neck.  She cleans the area around my stomach tube (PEG) with a Q tip and saline water.

Evening:  removes debri from around the stoma, suctions the trachea as needed.

Monthly:  The actual trach tube that holds the inner cannula has to be completely replaced.  Our ENT doctor does this but the last time we went he trained Karrie and she removed and replaced my tracheostomy tube, which is daunting! She did it well and we feel confident that it will be doable in the long run.  It means taking the old one out which leaves just the open hole in my throat, and then she puts a tiny bit of lube on the tip and carefully guides it in, while exerting some pressure.  This process is mildly uncomfortable but I am used to it now having had it replaced 3 times now.  It was one of my biggest hurdles but I feel confident now that it is fine.  It is something you can't "take your time" with because it will close itself after a while.  We need to get right on it once we take out the worn trach, or I could have trouble breathing. 

With regard to feeding, there is nothing by mouth-- and here is the process:  Three times per day Karrie hangs a bag on the IV pole with a tube for attaching to my stomach tube that has a valve on it, that closes and opens.  She fills the bag with 700 calories of liquid (looks like a peanut butter shake), and then opens the valve at the bottom on the bag and it drips into my stomach for 40 minutes.  At the conclusions she uses a large syringe to pour medications crushed and mixed with water into my stomach tube.  At the end she pushes the syringe with clear water and it removes the left over food and liquid putting it in my stomach.

These processes are time consuming and we are very much home bodies, with or without  COVID-19.  We will always have these things to do.

I am a trach patient and it is on top of the fact that I have a Parkinson's Plus condition called Multiple System Atrophy. I still have movements difficulties such as tremors and walking struggles, in addition to all the autonomic issues including the dropping blood pressure called Orthostatic Hypotension.  Two weeks ago I had my Deep Brain Stimulator implants generator replaced in my chest.  This system, which sends a flow of electricity into my deep brain in two places through implants is still very helpful to me and I have had this now 8 years! 

This whole new way of life is hard to get used to, but like one of my friends told me, "It's your new normal."  I am still human, though I fear the shortening of my life.  I have greater faith than ever that my life is in Christ and He has plans for me on this earth.  I was saved from dying on January 3rd, 2020, and I am so grateful for His grace extended through the doctors, the nurses, staff and of course, my wonderful wife and sons who supported me along with their great spouses, whom are like daughters.  Our grand kids sent me pictures and letters which lifted my spirits greatly.  Many friends and family prayed for us and continue to do so. Thank you!

Being home but isolated due to COVID-19 has been very trying.  It is worth living having the feeding tube and trach, and while some reject them, I chose life.  I had talked to Karrie before my emergency many times and she knew I preferred to live on, especially because of our family and sweet grand kids.  They are my purpose now.  I still play my instruments, but singing brings pain in my throat so I am trying to limit it to a minimum. This is a great loss for me.

I appreciate you keeping up with my blog.  It means so much to me.  Dan

2 Corinthians 4:16-17 - -  "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."

Easter Song for Good Friday

I recorded this video shortly after DBS brain surgery in 2012.  — Dan