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

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.