Two Thumbs Up on Johnny's Healthcare

Notice to ALL:

Since I brought Johnny home instead of putting him in a Nursing
Home or Vent Hospital or PULLING the plugs (which certain
unmentionables wanted done) in January '08, he's been doing great.

On Tuesday we had a visit from a team of physicians and a neurologist from the Miami VA Hospital along with 2 nurses who visit here frequently. The house was full with medical personnel!

We had a thumbs-up, excellent, yes, excellent, report!

We were told by all that they have never been so impressed by the progress of an ALS patient........... and the care that he receives here at "HOME".

We will be getting a Full written report next week which will be posted to this website. Stay tuned.

HURRAY JOHNNY!!!!!!! I love you!!!!!

God Bless to all who keep him in their prayers; it's working!

Love,

Debbie & Johnny Read more!

Johnny Before the Heart Attack - Photo Gallery

Read more!

Johnny's New Wheelchair - Christmas in July

It's finally here, complete with all the bells and whistles. Read more!

A Vow is a Vow, Part Two

Part One here.
Last Summer, Johnny and I decided we would get married in September. He'd said that no one would take better care of him than me. Two and a half years into his illness I had been caring for him day and night. He never wanted me to leave his side.

So we applied for the marriage license and set the date for Sunday, September 9th, 2007. We chose to exchange vows in Ryan and Lisa's back yard among the trees and plants that my son had planted. It was a beautiful setting to confess our love for one another and become husband and wife.

On Thursday, October 4th, we threw Johnny a surprise birthday party. It was his 67th birthday but all his friends managed to keep the surprise a secret. Johnny's eyes welled up with tears as he found the cocktail lounge at our condo was filled with many of his close friends. He celebrated in style that night, spending time talking with each person there.

Then the roller coaster ride of ALS went into overdrive on October 16th of last year when Johnny suffered a serious fall while walking behind me in Holy Cross hospital. We were in their Orthopaedic Center because I had broken my foot. Johnny had an episode of "drop-foot" that caused him to fall dead weight onto the marble floor. He was hospitalized with a broken orbit, a fractured shoulder and wrist.

We spent 32 days in Holy Cross hospital while Johnny recuperated from the fall. I stayed by his side through each of those days and nights. Through natural healing and much physical therapy he was ready to return home on November 16th. As he would become extremely anxious when I had to leave to do errands, I promised again that I would never abandon him. I will always be there for him. He was sent home with a brace for his right leg that would prevent the drop foot from recurring.

We thought we were done with the hospital for a while. We were wrong.

To be Continued... Read more!

A Vow is a Vow, Part One

"In sickness and in health, I vow never to leave your side."

Johnny and I repeated those words to each other on Sunday afternoon, September 9th, 2007. Enjoying the moment with us were Pastor Joel, my son, Ryan, and his wife, Lisa, my daughter, Shannon, and Lisa's parents. It was a simple, yet wondrous wedding known as a Trinity ceremony. John accepted Shannon, Ryan, and myself as his own. We vowed to always be there for each other. It was a day I will never forget.

I have loved every minute of the last eleven years with Johnny. We have had great times and great trials. In February, 2005, Johnny was diagnosed with Amyotrophic Lateral Sclerosis (ALS) - Lou Gehrig's Disease - and that has been the greatest trial of all.

At first hearing the diagnosis, we were in shock. The day after that we cried, and the third day we were asking ourselves why this was happening. Johnny has always been an optimist and, by the third week, he said, "Hell, I'm 64 years old. This could have happened to me in my 30s or 40s. I've lived a good life and I am NOT going to stop living my life to the fullest!"

Over the next several months and years, he signed up for every trial and study in our area for ALS victims. It first attacked his upper body; his shoulder muscles and arms. In the first year and a half after the diagnosis it progressed slowly, but Johnny weakened dramatically in 2007. Since he has been in home care nearly all of this year, he has remained stable.

For Christmas, 2006, we planned a family reunion for Johnny and the Miller family in Hilton Head, SC. There Johnny found out that his family was proposing he move from Fort Lauderdale to Fernandina Beach, Florida into a nursing home. Johnny's response was clear, "No way am I leaving my home!" From then, we began to seriously discuss marriage and our future.

From February to April, 2007, Johnny was part of a hyperbaric oxygen treatment research study in Miami. We found out in June that his deterioration from ALS had accelerated; the experiment did nothing for him. By this time, Johnny was not able to swallow his food, the muscles of his tongue and throat having succumbed to the disease. Johnny dropped from his normal weight of 160 - 170 pounds to 114 pounds, so he ordered a feeding peg in June. He also signed up to receive an LTV900 ventilator, as his breathing had become terribly labored; the muscles around his lungs were losing their strength.

Johnny gained back all of his weight by November of last year thanks to the feeding peg, returning to his pre-ALS weight of 160 - 170 pounds. He was happy that at least one aspect of his ALS had been turned back.

To be concluded in Part 2... Read more!