Latest News and Stomach Surgery

It has been an exciting summer as we have also turned to fall.  I went through the change of trach tube from uncuffed to cuffed, with the aim of using the ventilator each night as I sleep.  This process has gone off without much of any hitch!  The ventilator paired with my Portex size 8 cuffed trach tube has worked out beautifully. I am really benefiting from the ventilator.  I sleep much more deeply, wake for shorter periods, and most importantly, breath so much better with the ventilator attached to my tracheostomy tube.  

Our second book, FURTHER ALONG, got off the starting line with a burst of online sales, thanks to all of you.  I have recouped about half of our original expense in publishing, although I haven’t been happy with some of the minor errors not caught by the professional editors.  For this I apologize, and am getting the books going to the shelves improved with these minor errors fixed.  It is hard to write and see everything that is mistyped in such a long document.  The pros should catch things but with all books errors occur.  I am reminded it is the content and the message you want to get out that matters most.  Being there to help fellow patients and their caregivers, to lift and encourage, is my aim.  

The PEG or G Tube, needs to be moved. As you know, the last one ruptured injuring my stomach where the tube enters this vital area.  It was replaced, helping some, but ultimately needed a surgeon to actually move it to a fresh, healthy location.  My feeding tube is long-term due to swallowing difficulties resulting from faulty brain signal confusion, coupled with vocal cord closure on inhalation. Breathing and swallowing difficulty together cause a need to have a stomach feeding tube.  Do I miss food? Absolutely! 

I have surgery scheduled to go in and excise the tissue that is damaged at the old site (removal of a small portion of my stomach), and relocating a new feeding tube where it will have a much better chance of avoiding further injury and/or infection.  Infection is the main culprit of degenerative brain disease demise. Infection with multiple system atrophy can occur in the stomach, lungs, and bladder, among other locations.  Also, the ventilator at night helps to avoid respiratory failure during sleep.  

Thanks for keeping up with my sporadic postings and for all the support in promoting my book.  Happy Holidays! Dan

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

FURTHER ON: with Atypical Parkinsonism Book Release Announcement

It's finally here! The writing, the editing, the layout, the cover, the illustrations and the printing-- it is a long process but very rewarding! Now the fun part is here. Our book is available, initially in electronic form for E-Readers such as Kindle and Nook, and within hours/days the print versions, both paperback and hardbound will be available. You can buy the e-book right now at Amazon, Barnes and Noble, Apple Books, and several others as we speak. Here are links: AMAZON NOOK Apple Books Here is the write up posted with the book on sites: This moving and intimate memoir reflects on Dan R. Brooks's long battle with a rare, atypical parkinsonism syndrome. It discusses the details of his condition, how it affects his daily living, the changes he has gone through, the amazing efforts his wife and caregiver make to care for him, the impact and support of his family, and the spiritual journey it has taken him through. He speaks of a life with a growing disability and the choices he's had to make as he lives life to the fullest each day, even while in decline and more and more homebound. It is an honest look at how a degenerative brain disease is defined and affects an individual and a family. The memoir is about moving further along in life, knowing that we aren't promised tomorrow, but that we can live today like we will never die. It encourages a strong sense of hope in the midst of struggle against a terrible disease, giving inspiration to keep moving forward to make the most of a life with purpose. Highly recommended for patients looking for hope and inspiration in going through a chronic or fatal illness, and for the families, friends, and caregivers of people with neurological diseases such as atypical parkinsonism syndromes, Parkinson's Disease, Alzheimer's, ALS, FTD, and LBD. Thanks for all you support! Dan

Book Cover Design FURTHER ALONG

Just to give you a taste of my book, this cover gives you a feel. The professional artwork was done by our son, Stephen, who is a full time Visual Designer. Content wise, you will have the chance to read about my near death experience with a breathing emergency that resulted in my trach and feeding tubes, permanently implanted. Also, I describe my time as a patient in a nursing home and what that was like. I talk about overcoming difficulties and how to face trials with determination, love of family and friends and the hope that comes from faith. It should be available in softback, hardback and e-reader form in the next several weeks.

FURTHER ALONG with Atypical Parkinsonism - the Book

 A little update on the book:  The title will be FURTHER ALONG with Atypical Parkinsonism, a slightly different spelling and grammar of the the word "Farther", which I liked.  It will be more correct this way.  The book will talk about my experiences with Deep Brain Stimulation surgery, my near death breathing emergency which resulted in a tracheostomy and feeding tube, some early difficulty with a couple of specialists who weren't helpful, some great doctors who were the overriding majority of great care I received, and some inspiration on the road to dealing with a fatal illness.  

We do have a draft of a cover that I want to share, to get the excitement rolling.  We are looking at a late summer or early fall roll out.  -- Dan

The home owner's association helped us by removing a beautiful shade tree that was sending roots under our house after 47 years.  I got out for some sunshine with Karrie and she snapped this on her iPhone.

 

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!