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

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."