The Encouragement of Friends

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.

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

 

 

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.