Johnny by the pool

Cool weather finally! Read more!

Guardianship!

It's official. I'm now Johnny's guardian. I waited nine months taking care of the man I love day and night, and now I can better give him the care he needs. Georgia Tech is also sending a team here in November to check on Johnny. More on that in my next post. Thank you all for your prayers. Read more!

A Vow is a Vow, Part 4

The note was clear. "Take John Miller off life support now", the relative had written in the email to the hospital. Of course, the relative whom I will not name doesn't have to watch as the man that I love slowly suffocates while dying of starvation. Another moral dilemma is that the feeding peg and ventilator were both ordered and signed for by Johnny.

It's easy to send emails when you don't plan to visit. They haven't. Instead they have sent mean-spirited emails, and more emails, called the hospital where Johnny was staying to ask the staff to update them on his condition. One of the nurses joked once that she was going to start replying, "No, he's not dead yet."

People who have been in the front lines of caring for their severely ill spouse or loved one might be familiar with family members who send edicts from far away rather than lending moral support. Physically, it would be easier to just have watched Johnny die last December. But spiritually, I know I took a vow to care for him, and I know he's cared for me. Spiritually, watching him struggle for air is not an option. It's different when you're next to him in his times of clarity, and your eyes connect with his. If God had another solution, I think He would have revealed it to me by now. But His timing is not our timing.

Johnny stayed at Holy Cross from the time of the heart attack in November to January 25th. The crew at that hospital was quite wonderful, from the nurses to Father Jim Nero and Joanne the Chaplain. Spiritual care is important to Holy Cross, and it was a great help to me. I slept in the room with Johnny for 62 days, and snuck downstairs most mornings for Mass before he woke. Father Jim and Sister Joanne's support was a pillar of strength for me in those days. As were the daily calls from my son Ryan and daughter Shannon who also came several times to see him during that time.

There were tough days at the hospital, too. Shortly after the heart attack, the nurses laid Johnny flat, something you can't do to an ALS patient. Johnny's lungs began to collapse and they responded by giving him too much oxygen, blowing a hole in his lung. On December 6th, 2007, a tracheotomy was put in as the oral tube would soon cause severe damage if left in.

On December 18th, the first letter came from the family demanding Johnny be taken off any life support. It was a difficult Christmas to say the least. A few friends visited, and I put a miniature Christmas tree decorated with angels and beautiful white lights from my sister on the table opposite Johnny so he'd have something to look at. Everyone commented on what a wonderful thing to do for him during the Holidays to keep him involved. We watched and prayed during Midnight Mass on Christmas Eve. He recieved so many, many caring cards from my family and friends BUT not one from his own.

On January 19th, as I was setting up Johnny's new hospital room at home n our condo, a police officer showed up. He explained that a relative of Johnny's had called and complained that I was "endangering" Johnny. There is much, much more to the antagonism of his family toward any thought of him improving, but I don't want to dwell on that.

The officer didn't find any endangerment. Instead, he was surprised to find a fully functional home care center and two nurses who were helping me set it up. And, of course, Johnny wasn't there...yet. Six days later, Johnny was home looking out over the ocean as he has always loved to do.

And here he is still. He has remained the same, neither greatly improving nor greatly weakening. If anything, his hands and legs are a little stronger than before and he is aware of his surroundings and visitors when they come. Nurses come pretty much to do basic tasks and give me a chance to pick up Johnny's medicines and do errands. I am by his side 90% of the time, cleaning his trach, feeding him, and keeping him clean. Exercising his legs , arms and neck I love him so very much. He has been everything to me for many, many years. I can see no other way than to try and do everything I can for him as I have vowed to do. Read more!

A Vow is a Vow, Part Three

Having recovered well from his fall in October, Johnny came home on November 16th. I still had to lift him up when he wanted to stand. His arms wouldn't hold his weight. We even waded into the surf outside our condo. Johnny would do his exercises with an innertube around his waist. He was as determined as always to do his best to reverse or stop the advance of the Lou Gehrig's. John has never been a quitter.

Johnny was weak but very lucid. They say ALS never attacks the brain. On Monday, November 26, 2007, we started off the day normally, wading into the waves in front of our place for our 15 minute splash. One of his nurses, Marlene, paid a visit, and left shortly before noon. Johnny looked to be in great shape considering his disease.

Around noontime, Johnny said he needed to go to the bathroom, so I helped him up. As he reached the bathroom, he complained that he couldn't breathe. I quickly grabbed the oxygen mask and placed it over his mouth and nose, beginning a steady flow of oxygen as he sat down on the commode. It only took eight minutes for the paramedics to arrive. It was then that I was told Johnny was having a heart attack.

Three of his arteries were blocked. Thirty two days in the hospital and just ten days out, and now this. I am proud of how Johnny's spirit has been steady and strong throughout all these trials. Not many people could stand it without cracking up. Johnny was still badly bruised from his fall in October when he leaned forward in his wheelchair to tell our chaplain, "God...is...good!" It took all his energy, but not all his spirit, to say that.

In the ambulance I called my son, Ryan. He immediately made plans to pick his younger sister, Shannon, up and take the next flight out of Tampa. By 9 pm, they were at Holy Cross at my side. What a great pair of kids God has blessed me with! Their support strengthens me during these uncertain times.

Dr. Landaue reported that he'd have to operate on Johnny. My love was in good hands at the new Jim Moran wing at Holy Cross. However, there was a moment of unpleasantness when I called Johnny's brother, and he sounded agitated that I had bothered him. While on my speakerphone, with the doctor waiting for me to give him the go-ahead, my brother-in-law said, "You're his wife now. You make the decisions!"

From that point onward, the response of Johnny's closest relatives has been heart-breaking. Indeed, I made the decision that night, and all of the thousand-and-one decisions since then. It isn't Johnny's fault that he got sick with this dreadful disease; the motto for which it is best known, "a prisoner in your own body", is spot on. Furthermore, Johnny did not die that day in November. He is still alive today; right here next to me. He has been healthier and happier in his own special bed in his own condo, overlooking the beach. For 9 months he has not deteriorated and has gained an extra twelve pounds since his release from the hospital.

As difficult as it is to watch Johnny fight this disease, and the effects of the heart attack, it is even harder to fathom the abandonment that this gentle, loving man has quietly observed. All these months later - September is around the corner - he has never shown an ounce of bitterness. When one of his old friends stops by, no matter how rare that is, his mouth bursts open with that bright Joe DiMaggio smile. Only good will and love registers with Johnny. He loves life itself, and knows the difference between that and merely loving your own life.

To be continued in Part 4 - Christmas, 2007.... Read more!

Zeus oversees Physical Therapy

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Family Visitors

My son, Ryan, his wife, Lisa, and, of course, Zeus and company, drove down this past week from Tampa to spend five days with Johnny and I. Johnny's new wheelchair can go anywhere and has up to 18 hours of battery time for his vent. Read more!

Johnny and the Girls by the Pool

The weather has been great here in Lauderdale by the Sea, and Johnny has been enjoying the sunshine and constant breezes off the ocean. Here Shannon and friends enjoy the pool and visit with Johnny this past weekend. Read more!

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

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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!

Ryan, Johnny and Zeus on Father's Day, 2008

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There is Life After Vent.......

Friday, July 27, 2007

THE VENT LIFE

Who Says You're Out of the Game?


You'll find the hardware here also, but the heart of this cover story is lifestyle. To too many uninformed observers, the vent life is a contradiction in terms -- how can you have a decent life when you're plugged into the local utility? Here's rich evidence that life doesn't end after mechanical ventilation from the people who know best -- readers who use vents. They put to rest the vexatious quality-of-life issue, and prove that a vent is just a machine, not an enemy.


The Vent Life by Barry Corbet >See also Bully Pulpit >The Quality-of-Life Issue >RFs Are All Around You and Guess Where They're Showing Up? by Jerry Daniel New Mobility Talks to Vent Users by Barry Corbet Mission Possible? Converting to Noninvasive Ventilation by Jean Dobbs >Keeping the Trach >Manufacturers >Resources




THE VENT LIFE


By Barry Corbet


Once again, we look to the experts -- in this case, to people who use ventilators. From what they have told us about the vent life, we can pass on some generalizations.


The biggest single problem vent users face is the outrageous cost of their equipment and care. Many who use invasive ventilation need skilled nursing, and paying for 24 hours a day of that can be a nightmare. A few have trained friends, family and unskilled help so well they feel comfortable with a minimum of nursing care.


The care level may not be a matter of choice. Many states mandate skilled nursing for vent users. That annoys those who feel they can get by with cheaper help, and alarms those who fear their essential nursing will be cut by the current enthusiasm for cost containment.


At any level of care, by the time you throw in a couple of $10,000 vents and a power wheelchair -- and some way to transport them -- you've run up a rather astonishing bill. Consequently, most vent users must rely on Medicare, Medicaid and entitlements. An admirable few can make enough to pay their own medical expenses, but it's a fiercely heroic life they lead.


Can you learn to love your vent? Sure, said most -- it's the breath of life, and it becomes part of you. Others curse their vent as a noisy, cranky umbilical cord to a wall socket. Most gripes are not about the machine itself, but about dependency, the perception of being a burden and lack of privacy. What's the hardest thing about using a vent? It's unanimous: when it doesn't work.


Ventilators are dependable and failures are rare. Yet almost everyone we talked to has a couple of horror stories. The lines of defense, successively, are "frog-breathing" for those who can do it, a spare vent, the Ambu-Bag and calling 911. Some admit to a lingering uneasiness about it.


Our experts -- even those who have spent several decades on a vent -- are generally in good health. The most common complaint is needing more time on the respirator. Most feel they've learned enough over the years, and are good enough at reading their own bodies, that they can tell when they -- or the vent -- have a problem.


The MDA comes in for some criticism, this time for its lack of support for mechanical ventilation for people with Duchenne muscular dystrophy. Why, vent users ask, does the MDA feel their quality of life is so low that ventilation is a waste?


That's a point everyone agrees on -- quality of life should be defined by the person living that life, not somebody else. Not anybody else.


The Quality of Life Issue


Is a reasonable quality of life possible if you use a ventilator?


Many doctors and allied health professionals don't think so. The most common reason that MDA clinic directors cite for discouraging ventilator use is poor projected quality of life. But the health professionals' low opinion of the vent life is not shared by the people living those lives.


If your doctor, nurse or even your family and friends are telling you that your life will be terrible if you go on a ventilator, hand them a copy of these studies. And tell them to go fish.


A 1992 life satisfaction study by John Bach compared responses by 80 Duchenne muscular dystrophy ventilator users to responses by 273 MDA clinic directors. The clinic directors significantly underestimated the users' reported life satisfaction. The study concluded that patients who were perceived by physicians to have a poor quality of life were less likely to be offered assisted ventilation. In a 1992 study by Bach and Campagnolo of 395 ventilator-assisted people who'd had polio, 86 percent reported their lives were characterized by hope, value, freedom and happiness. Forty-two percent of the ventilator users were employed and 39 percent were married. Yet again, the health professionals used for controls underestimated the life satisfaction of people using ventilators and overestimated the difficulties. It was concluded that physicians should be aware of their inability to accurately gauge the life satisfaction of individuals and should not use their perception of poor quality of life as a reason to deny ventilator assistance. In a 1994 life satisfaction study by Bach and Tilton, 42 ventilator-assisted quads and 45 autonomously breathing quads were compared to a control group of health care professionals. Both groups with spinal cord injury reported higher life satisfaction ratings than were predicted by the controls. Notably, the ratings for those who used ventilators were higher in some areas than for those who didn't -- the former were dissatisfied with sexual function only, whereas the latter were dissatisfied with their jobs, health and sexual functioning. Vent users said life was friendlier, more interesting, more enjoyable, fuller and more hopeful than non-vent users. A 1992 study by Whiteneck, Charlifue and Frankel of people with spinal cord injury at least 20 years post-injury showed that those using ventilators rated their quality of life higher than those who didn't, and had a lower rate of suicide ideation. -- Barry Corbet


The above information was taken from "Independent Living and Quality of Life Among Persons Who Use Ventilators," an in-press book chapter by Margaret A. Nosek, Ph.D., and S. Ann Holmes, M.D. Both authors are ventilator users themselves.

Read more!

Invest in ALS?

"The ALS market was worth 148m in 2006" according to an investment paper.

The ALS market was worth $148m in 2006 across the seven major markets. With the only approved treatment for ALS, Sanofi-Aventis''s Rilutek (riluzole), facing generic incursion in 2012-13, future growth in this market is dependent on the success of pipeline drugs.

Scope

Scenario based analysis and forecasts of the commercial potential of the ALS market to 2016.
Analysis of
patient potential, marketing factors, commercial attractiveness and clinical attractiveness of key late-stage pipeline drugs.
Strategic recommendations for maximizing the potential of drugs in this niche orphan disease market.
Indication-specific sales forecasts of marketed and key pipeline drugs to 2016.

Highlights

A lack of new entrants, and the possibility of polytherapy, results in Sanofi-Aventis''s Rilutek (riluzole) dominating the market until patent expiry in 2012-13 in Datamonitor''s base scenario.

Orphan drug status, rapid uptake following launch, limited risk to the company''s share price if drugs fail, and possible indication expansions make long-term investment in ALS a commercially viable option.

A scenario forecast based on the clinical success of rhIGF-1 (recombinant human insulin-like growth factor I) related therapies reveals a potentially lucrative market. However, with a high attrition rate of ALS Phase III clinical trials, and mixed efficacy data in Phase II, the results of currently underway studies will be pivotal.

Reasons to Purchase

Access the lucrative potential of this underdeveloped neurodegenerative disease therapeutic market.
Benchmark key late-stage compounds against the current leading therapy Sanofi-Aventis''s Rilutek (riluzole).
Understand the opportunities in this market based on the comments of interviewed key opinion leaders.

www.companiesandmarkets.com/Summary-Market-Report/Pipeline-Insig ..

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So Much, So Fast - New Documentary on ALS

Click on the Read More! script to see the trailer and the synopsis of the film.

So Much So Fast is about the remarkable
events set in motion when Stephen
Heywood discovers he has ALS (Lou
Gehrig's disease) and his brother Jamie
becomes obsessed with finding a cure.

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Johnny's Photo Gallery - May, 2008

[Click on the Read More link to see the rest of the photos. that's Lester the famous nurse extraordinaire!]





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Johnny by the Sea

Johnny, Debbie, Ryan and Shannon out on the pool deck. Ryan and Shannon flew in for a few days from Tampa once again. Wednesday afternoon, April 9th, 2008. [Note that the date for this post is to ensure that it stays at the top of the blog] Read more!

Johnny Getting A Hair Makeover

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Johnny Poolside and Surfside

The pool deck is Johnny's favorite hangout. The neighbors all greet him and mingle. When that gets boring he enjoys watching the waves....
Photo is from Saturday, May 4th, 2008. Read more!

"A Latter Day Lou Gehrig Survives and He Demands to Be Heard"

This New York Times article of the 15 year struggle by Chris Pendergrast with ALS is a breath of fresh air. Full story below:

For a man so active, a blur of energy climbing mountains, running fishing-boat charters, fixing cars and moving, always moving, it began as weird glitches in the gears.

There were twitches in the eyes and hands, spasms and cramps in muscles he didn’t know he had. Then it got worse. Chris Pendergast, then a 44-year-old elementary school teacher from Miller Place on Long Island, who could hike forever, would be walking across the lawn and then fall on his face as if some microscopic shift in terrain were too much for him. There were tests and more tests, and when he received the diagnosis on Columbus Day, Oct. 13, 1993, he had an obvious question.

“Well,” he asked the doctor who had just told him he had amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease, “what’s the treatment?”

There wasn’t any response, so he repeated the question, figuring he hadn’t been heard. But it didn’t take him long to figure out that the silence was his answer. There was no treatment, there was no cure, and as he soon learned, he would almost certainly be dead in three to five years.

Even Mr. Pendergast has no idea why he’s alive today.

Luck of the draw? His own manic, stubborn will? Divine intervention? Take your pick. But if sometimes sickness leads you into the light as well as into the dark, who could ever invent the journey that Mr. Pendergast has taken since he was given his prognosis?

Last week marked an anniversary forever etched in Yankees lore — May 2, 1939, when Gehrig, his strength ebbing by the day, took himself out of the lineup after 2,130 consecutive games. He announced his retirement on June 21, after receiving the diagnosis of A.L.S. He gave his speech proclaiming himself “the luckiest man on the face of the earth” on July 4. He died on June 2, 1941.

Mr. Pendergast will mark an unlikely anniversary of his own on Sunday. Eleven years ago he came up with an idea that horrified family and friends, who soon realized that Mr. Pendergast was so stubborn he was actually going to do it. He set out from Yankee Stadium on a circuitous, 350-mile, intricately mapped, 16-day route that would take his motorized wheelchair to Capitol Hill to call attention to the need for more A.L.S. research and immediate access to Medicare and Social Security benefits.

He did that ride for two more years. Since 2001 he’s made an annual wheelchair ride between Montauk and Manhattan. This year he plans to make the trip again, with perhaps 10 other people with A.L.S., who will do parts of the ride with him over the next seven days. Every year someone says that maybe it’s time to stop. Every year he says, no, it’s not. His foundation, Ride for Life, has raised $3 million for research and patient services.

Sitting in his wheelchair at Stony Brook University Medical Center, speaking through an amplified microphone, Mr. Pendergast has no illusions about the Darwinian worlds he’s competing in — one for personal survival, the other for attention in the bazaar of marches and runs and walks for one cure or another. Most of the efforts, he said, are organized and supported by the people who have survived a disease. But 90 percent of people with A.L.S. are gone in five years. Almost no one lives as long as he has. So, he figures, if there’s a divine logic to his ability to survive, maybe this is it.

“They say the squeaky wheel gets the grease, but since there’s no surviving constituency for A.L.S., there’s no squeaky wheel,” he says. “The patients die quickly and die in the most difficult environment, and the families just close the book and walk away. There’s no survivor to rally around, no celebrations, there’s just heartache. The disease lingers generation after generation, and every five years another poster disease comes along that gets the attention and massive research money, while this one keeps killing and killing, 6,000 people every year.”

He adds: “The answer isn’t to take money from your group. I don’t think different disease communities should be scrapping for pieces of the pie. I would like to have a bigger pie.”

Sometimes all the money in the world doesn’t buy a miracle. After all, before there was Chris Pendergast, there was Lou Gehrig, whose name turned A.L.S. from an unpronounceable medical oddity to a household name. And there is still no cure and precious little progress.

But sometimes miracles do happen, whether it’s his 15 years with the disease, those 11 years of improbable voyages, seeing his first grandson born a year ago, the way he’s transferred all his stubborn manic energy to this stubborn, manic cause.

“Thinking back to 1993, given the choice between being cured then or being where I am now, I don’t know,” he said. “I think I might choose where I am now, because of the joy and peace it has given me.”

The amplified voice was quiet for a moment.

“That being said, I’ll take the cure now.”

E-mail: peappl@nytimes.com Read more!

Lou Gehrig on Lou Gehrig's Disease

"The past few weeks you've been reading about a bad break. Today, I consider myself the luckiest man on the face of the earth. That I might have been given a bad break, but I've got an awful lot to live for. Thank you."

- Lou Gehrig, July 4, 1939

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Physical Therapy Time

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In The Arms of the Angel - Sarah MacLachlan and Josh Groban

[This is from last year.]

We were alone in the hospital room but he didn't acknowledge that I was there. A few moments later I looked up from my laptop and John was staring right at me, not that vacuous stare but what looked like a "Hey, what's up?" stare. I quickly put the laptop on the night table and went to his side.

"Hi there!" I wanted to asked him how he felt but I decided that would be a stupid question to ask of a man with severe ALS trying to recover from a heart attack who hasn't been able to talk in a month. I learned my lesson many months ago when I flippantly said "Get well soon!" He laughed at me then and said, "Get well? Really? No one with ALS gets well, Jimmy."

So I went on to say that I've been praying for his alertness and strength to return. I soon realized that he hadn't been looking at me at all. His eyes that I thought were looking right at me were still looking...where I had been, only they were more fixed now than before. And I wondered what he was looking at. Nothing? Something paranormal?

I remembered my grandfather saying that my late grandmother was standing at the end of his bed summoning him. My paternal grandfather, who never had a shred of Alzheimer's or other senility told us matter-of-factly, "She's asking me 'What are you waiting for?'"

I have no idea what my friend is looking at. But I do know that he is in some twilight zone between the realms of the known and the unknown. Science, with all its bells and whistles, can only look at a man in his state, physically recovering, yet mental capabilities unknowable, and say, "He's in the arms of the angel."

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Not More Physical Therapy!

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Jean Angells' Fascinating Story

Here's a link to the story behind the Angell family's battle with ALS.

EMBRACING THE NEW NORMAL:
Jean Angell Speaks from Her Eye-Response Computer

Packard Center board member Jean Angell has lived with ALS for 10 years, the last six on a vent. What follows is the complete interview on which the story about her on the back page of the Winter 2008 ALS Alert is based. Read more!

Retired General Plans Attack on Lou Gehrig's Disease

Hat tip to the Times and Democrat for this imspiring article.

CHARLESTON -- Four and a half years have passed since Tom Mikolajcik was diagnosed with Lou Gehrig's disease. Seventy percent of people with amyotrophic lateral sclerosis, or ALS, die within five years. Time is not on his side.

Now, Mikolajcik must make decisions about how he will face the last stages of the disease before he loses the ability to do so.

The degenerative disease, which is known for killing New York Yankees first baseman Gehrig, strikes about 15 Americans daily, shutting down nerve cells responsible for movement. Limbs weaken and atrophy before paralysis spreads to the trunk of the body. Eventually, speaking, breathing and eating are affected.

Patients must decide if they want to go on a ventilator and feeding tube to hold off the inevitable a little longer.

"Today, my decision is I will put in a feeding tube even before I need it," Mikolajcik said. "Today, my feeling is I want to go on a ventilator as long as I can communicate with family and friends."

The retired Air Force general and former commander of Charleston Air Force Base is taking charge of these critical decisions by participating in a medical study testing diaphragm-pacing stimulators in ALS patients. Located below the lungs, the diaphragm is the large muscle used for respiration.

The pacing device stimulates the diaphragm with surgically implanted electrodes to maintain muscle mass. The stimulator, already used in people with spinal cord injuries, might delay the need for a ventilator by more than a year.

During the surgery, a feeding tube will also be inserted, although Mikolajcik does not yet need one. "The sooner you have the procedure the better," he said.

Dr. Raymond Onders, director of minimally invasive surgery at the Medical University Hospital's Case Medical Center in Cleveland, pioneered the technology and the procedure. The late actor Christopher Reeve, who suffered from a spinal cord injury, was Onders' second patient to receive a stimulator.

ALS is a fatal disease, but theoretically, people could live indefinitely with a tracheotomy and ventilator. But most don't want to do that, Onders said.

Doctors can predict when ALS patients will die based on their rate of decline in respiratory function.

To measure the success of the stimulator, Onders looks for decreases in that rate. "It's not a cure," he said.

Mikolajcik was successfully fitted with a stimulator last week in Cleveland. He is part of a 100-person trial in six U.S. sites. Onders previously completed a safety trial implanting the device in 16 ALS patients whose breathing function decline slowed, delaying the need for a ventilator by more than a year.

"I want to be able to listen, watch and absorb my children and grandchildren as they grow and change," Mikolajcik said. The mind and senses remain unaffected by the disease. But as time passes and the body shuts down, the ability to communicate diminishes.

Toward the end of the disease, some people use their eyes, looking right or left to signal "yes" or "no." In preparation for the time he will become speechless, Mikolajcik recorded himself singing "A Bushel and A Peck" to be played when his grandchildren are placed in his lap.

In August 2003, the retired general went to the doctor with a minor complaint: He was feeling tired and not hitting his golf balls as far, he said. The doctor noticed a slight twitching in Mikolajcik's chest called fasciculation.

The doctor told him the best case scenario was a benign tic, and the worst case was ALS. Mikolajcik went home and Googled ALS.

"I almost fell out of my chair," he said. The muscles in his arms shut down first, then his legs. He can move his left thumb and index finger, and if he concentrates and is well rested, he can move his left wrist and ankles. Little is known about ALS, which was discovered in 1869.

"In 70 years, there's only one questionable drug that may extend life by three years," Mikolajcik said. "In 70 years. Give me a break."

For unknown reasons, veterans have a 60 percent higher chance of developing ALS. That high rate is why Mikolajcik said he feels strongly the government has a higher responsibility to advance ALS research.

Legislation to establish an ALS database that will warehouse information on the disease for scientists and patients has passed the House and is awaiting consideration by the Senate.

"I am blessed that I'm a Type A personality," Mikolajcik said. "What about those who take no for an answer?"

Read more!

Reflections on a Job-esque Week

From Jim Jordan's website - November 4, 2007

I went to see one of my best friends in the hospital this week. He's struggling with Lou Gehrig's disease (ALS). Two weeks ago he passed out and fell in the same hospital while they were doing work on his wife's broken foot. Their travails have been horrible lately. On the way in I called his wife to see if they needed anything. It turns out that she needed someone to be there to receive my friend from his therapy session because her car had just been broad-sided by a delivery truck.

While I waited for him to be wheeled down I looked around for something to read and saw their Bible sitting by the window. It didn't take me but a second to decide what I wanted to review, I picked the book of Job. You know the story, Job was wealthy and happy, blessed in every way, until Satan made a deal with God that Job would be tested. Everything goes wrong in Job's life. His children are killed in a windstorm and he loses his livestock. Job's wife and friends give their two cents on what God was trying to tell Job by these terrible events.

There were two new things that stood out even though I'd read this story numerous times. The first thing I noticed was reading God's response to all the ponderings ("words without knowledge") of the humans in chapters 38 and 39. He uses nature to make His case. It becomes plainly clear that the idea that Job and friends would even try to "figure out" the Creator's purpose is absurd. In chapter 42, Job confesses his sin. This is the way The Message puts it:



Job answered God: "I'm convinced: You can do anything and everything.
Nothing and no one can upset your plans.
You asked, 'Who is this muddying the water,
ignorantly confusing the issue, second-guessing my purposes?'
I admit it. I was the one. I babbled on about things far beyond me,
made small talk about wonders way over my head.
You told me, 'Listen, and let me do the talking.
Let me ask the questions. You give the answers.'
I admit I once lived by rumors of you;
now I have it all firsthand—from my own eyes and ears!
I'm sorry—forgive me. I'll never do that again, I promise!
I'll never again live on crusts of hearsay, crumbs of rumor."



Job didn't know what he was talking about. And neither do we. There are times when God annoys me, honestly. But that is not a hindrance to my undying love for Him. Job was right to ask "Why me?" And many times I see the stupid things that happen to me and ponder the incredible turn of bad luck that my friend has had. Both my friend and I have grown closer to God in recent years and yet our fortunes have been ransacked by a superhuman assault during the same time. Thanks be to God? Do we blame Him? Do we accuse Him?

The second nugget I had overlooked in the book of Job was the name "Satan" in Hebrew. It means "accuser" or "adversary". It is a logical distinction for the prince of darkness but it speaks volumes to us. Do we desire to be the accuser, the adversary of God? Will our discontent, as rational as it is, become fertile ground from which we oppose our God? The answer is "no"!

A few days after my friend fell in the hallway at the hospital, passing out and falling dead weight onto the tile floor, his left eye was still bulging out of the socket, green, red, and black, I went to visit. I arrived just as the chaplain showed up to the room. Seeing he had a visitor she said she was praying for him and would come back later.

My friend sat crumpled in his wheelchair, swollen eye and broken shoulder, withered arms at his side, he leaned forward slightly and spoke softly. "God...is...good." He nodded his head for emphasis and then repeated the statement.

What a testimony! It's easy to blame God, to become His adversary because of the crappy hand you've been dealt. By all our human standards His timing is awful and His blessing of our fidelity is often nil. But there is nothing more rewarding than simply being at peace with your Creator. He is good. He is awesome. He is perfect. Did we not always know that?

Heavenly Father, You are almighty and all-knowing, therefore I abhor myself and repent in dust and ashes. Though you lead me to the cross, breaking down each of my muscles and limbs, even though you slay me, yet will I trust in you. For you are all there is, all there ever was, and all that will ever be. I stand in awe. I can do no other than worship you forever.

Give my friend strength in his journey and bless his wonderful and devoted wife with your peace that goes beyond understanding. Indeed "beyond understanding" is where you are taking us. In Jesus' name I pray, amen. Read more!

"She's Dying. His drug could save her"

From The Hook.

Mary Jane Gentry is going to die, and the UVA Health Sciences
Center, which has saved countless lives, has pulled away the experimental drug
that might save her.
"It was a ray of hope," she says, "and then they
stopped it."
When she was diagnosed 18 months ago with an aggressive case of
"Lou Gehrig's disease," Gentry knew it was a death sentence. Doctors told her
she had less than three years to live.
Desperate, Gentry-- herself a nurse
at UVA-- agreed to participate in a novel drug study. After eight weeks, she was
thrilled by a sign that the disease not only seemed to have slowed, but might
actually be reversing. She could suddenly move her left hand, which had been
useless for several months.
And her experience wasn't isolated: nearly half
of the study patients reported noticeable improvements in their condition while
none reported side effects.
So why did UVA halt the study?

Click on the link for the full story. Read more!

Letter from Johnny and Debbie

January 27, 2008

To Whom It May Concern:

Hello, my name is Debbie Miller. The information below will describe ALS (commonly referred to as Lou Gehrig’s disease), and the importance of proper treatment to help manage the symptoms of ALS. This letter is written in hope to raise your awareness of ALS and to assist me in providing funding for my husband, John Miller’s care so that I can fulfill his wished that he be cared for at his home.

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

As the weakening and paralysis continue to spread to the muscles of the trunk of the body the disease, eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent respiratory support in order to survive.

John has reached a point where he requires the use of a ventilator which he has. John was diagnosed with ALS in February of 2005. He had an injury in October because of "drop-foot", causing him to fall and fracture an orbit, shoulder, wrist and hand and suffered a hematoma on the left side of the skull. He was recovering well after a 32-day stay in the hospital. He was home for a period of 10 days when he suffered a heart attack on November 26th. Since the heart attack, he has required the use of the ventilator and now we are trying to wean him off of that.

While there is no cure for amyotrophic lateral sclerosis (ALS), treatment and appropriate care can help maintain John’s quality of life, manage his symptoms, and avoid complications for as long as possible. ALS has placed extreme physical, emotional and financial burdens on me and my family. Six months after John's diagnosis, I was forced to give up my full time career to care for him myself 24/7. Being his only caregiver for this long I have helped with some expenses, and the last year's medical demands have consumed all of my savings and nearly all of his. My daughter Shannon ( John's Step Daughter 16yrs. ) is too young to help financially and my son Ryan ( John's Step son 26yrs ) is maxed also financially from doing his best to help and lives in Tampa with his wife, Lisa. They cannot leave their full time careers to come to Fort Lauderdale to help on a permanent basis. John's birth family lives out of state and has not availed themselves to help. Granting me this financial support will aid in relieving stress and caregiver burnout by providing relief and enabling proper care for my husband. This is crucial for maintaining a productive and healthy lifestyle.

John has been blessed to have the option to choose to utilize technology to assist him in living beyond respiratory failure on a ventilator. Along with this right we have the responsibility to plan for the cost of care because neither the federal and state government nor community resources cover the cost of the care of persons on invasive ventilation. Nursing homes in Florida seldom provide long term care to adults with tracheotomies on a ventilator. With Medicare covering very few days in the facility, I am required to pay the rest out of pocket, in which I simply do not have enough funds to do so. As I have promised my husband that I will bring him home, upon discharge I will still need to plan to have several family members trained to provide care at home or I will need to plan to finance the cost of nursing care at home, at least 8-12 hours a day. The cost of a vent nurse is estimated to be $35-60 an hour. The biggest obstacle that I am faced with is locating the funds to ensure that I am able to maintain John’s quality of life. For the next full year it will require an estimated $150,000 to maintain John’s quality of care at home. A donation of any amount would be of great value in giving my husband some quality of life.

As persons with ALS often struggle to find an adequate amount of funding for professional care; authorizing this donation to assist me in providing proper care, will relieve the financial burdens that I am faced with as the primary caregiver, a daily basis.

Thank you for your time. God bless you,


Debbie Miller

Psalm 103 - Praise the LORD, O my soul, and forget not all his benefits, who forgives all your sins and heals all your diseases, who redeems your life from the pit, and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's. The LORD works righteousness and justice for all the oppressed. The LORD is compassionate and gracious, slow to anger, abounding in love.

100%of the funds collected go directly to John and Debbie Miller to help in their financial battle with ALS. To follow John’s progress visit http://johnmilleralsfund.blogspot.com.
Make Checks payable to John Lodge Miller ALS Medical Trust Account:

Wachovia Bank
John L. Miller ALS Medical Trust Fund Account
Galt Ocean Mile Financial Center
3600 North Ocean Blvd.
Fort Lauderdale, FL 33308
(954) 468-2840 Read more!

Lithium - Could It Be The Stopper?

A surprising result in the fight against ALS.

Italian researchers claim to have stopped ALS
dead in its tracks.
By stopped, they mean no progression.
By ALS, we
mean the incurable disease for which there has been no significant medical
breakthrough.
The Proceedings of the National Academy of Sciences, no slouch
as scientific journals go, has accepted the researchers' paper for publication.
We should see the details of their possibly landmark study in early February, a
journal spokeswoman said.
I want to avoid overstating the significance of
these findings from what is, after all, only a single, small clinical trial.
But on its face, it's significant.
Sixteen ALS patients were given two
drugs: Riluzole, the generic name for the only drug approved for treating ALS,
and lithium, a mood
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stabilizer
used for bipolar disorder and depression.
Another 32 patients took only the
Riluzole.
The patients - 16 on lithium and 32 not - were watched and
evaluated over a period of 15 months.
The results of the trial were
announced in early November at a Parkinson's disease conference in Italy. News
of the findings was carried in an Italian science journal.
At the end of the
15 months, 30 percent of the group not taking lithium had died. Those who
remained suffered on average 50 percent decline.
This is what one would
expect with ALS.
For those taking lithium, however, there were no deaths.
Additionally, the ALS patients taking lithium experienced no meaningful disease
progression, according to Francesco Fornai of the University of Pisa.
Eight
of the 16 were diagnosed with the more aggressive bulbar form of ALS that
attacks the motor nerves for talking, eating and breathing early on, Fornai
pointed out. They would be expected to die more quickly.
Two years after
starting on lithium, only two had died, one from a heart attack and the other,
who suffered from an advanced case of bulbar to begin with, from ALS-related
causes.
The rest remained stable with no progression.

Fullstory at http://www.sbsun.com/ci_8089973?source=most_emailed.

Read more!

Recalcitrant Lake - Explained

This is an explanation of yesterday's post, Recalcitrant Lake. First, the title. In this case the title was the first thing to come to mind as was the subject matter. The part of a poem that inspires the rest is like a butterfly that lands on your shoulder and whispers something like "recalcitrant lake" in your ear. And you start repeating it. I think this fell together quickly - one week - because of the urgency of it (hospital visits weigh heavy over time).

Once I had a butterfly whisper stuck in my mind for three years. It went "She can't get the flash to work". Every attempt at working that into a poem collapsed miserably but I still recognized that it was an anapest follow by four syllables forming an iambic meter. It had a good sound to it. Shortly before Mother's Day the rest of it hit me like a thunderbolt - just in time for a winsome Mothers' Day poem.

Now I hadn't used the word "recalcitrant" in some time and I wasn't sure if "Recalcitrant Lake" made any sense. I was surprised to find that the meaning was something like I'd remembered: resisting authority or control; not obedient or compliant, basically hard to deal with, manage, or operate. Combined with lake, a thing in which you could drown, it was an apposite description of what it must be like to have a disease raging through your body. It's almost too accurate a metaphor.

Sometimes something unpleasant is necessary, especially if its true. But this recalcitrant lake experience also is a nightmare for the significant other or others whose lives are rocked by the tidal waves of the disease, in this case ALS - the dreaded Lou Gehrig's. Indeed these are the two personalities of the poem, the patient and his wife, my friends John and Debbie. My ignorance of the paid caregivers is not meant with any disrespect to them. We have met many wonderful people who care deeply about Johnny's well-being. It's simply that their roles didn't find their way into this particular poem.

It's not good, not at all

not at all, consuming, gnawing

away at my vitality;

Amyotrophic Lateral Sclerosis causes the muscle to wither and fail. It began in his shoulders then worked its way to his arms. When he had this terrible fall in October at the hospital(the beginning of this rapid decline), it became apparent that his feet were also coming under the spell of the corrosive muscular curse. His tongue and throat muscles were shrinking as well and now he is fed through a plug in his stomach.

IVs invade, filling an oasis

under my skin with numbing

concoctions making even

my bones tremble and grow soft.

A shaky hold I have, my lifedraining its putrid effluentover my bedpan, soaking the linens.The nausea of the IVs and the frustration of being incontinent.

It's not good, not at all,

not at all, as bauds of Pharma

make me sicker, make me dazed

and asinine alarms make me crazy.

"Bauds" is a little literary swipe from Wallace Stevens' classic "13 Ways of Looking at a Blackbird". There the bauds of Euphony, here the bauds of Pharma - the drugs that never work as good as they are explained they will. The reference to "asinine alarms" is that stupid nasally sounding "boop-oop" alarm of the respirator whenever the patient coughs or has trouble breathing.

I fight vile feelings of pique

My secret hope is that the world

will end tomorrow and take me with it.

Feelings of ire or pique (including wounded pride)are common in terminal patients.

For now I am speechless and rigid

I am the emergency in 372, hysterical,

I am the commotion, the Code Blue!

Perhaps a little poetic license here. John has had panic attacks but not a "Code Blue" - I think that's when something really bad happens (when my brother-in-law was rushed to ICU, they called it a "Code Blue" over the PA system). I wanted to bring to life that moment when the experts take over and send the family member(s) to the hallway. Commotion reigns.

You're still here, your still here

I can see you across the way

It's just you and me, surrounded

by the blurry, dry-erase names

that come and go like IVs.

In the commotion, the patient makes eye contact with their loved one. The hospital where John has been uses a dry erase board to list the nurses' names. He is surrounded by the nurses.

I have my one good eye fixed on you -

deny me not, not once nor thrice.

Don't let me die here, floating

like a starved jellyfish drowning,

depraved in this recalcitrant lake.

A plea to the loved one. "Not once nor thrice" is from the gospels. In the clip from "Passion of the Christ" that they used for the "Just As I Am" video, Jesus, wounded and bloody, looks out at Peter who is receding into the crowd trying to get away.

You're still there, you're still there;

I can see you between the scrubs,

The loved one has not abandoned him.

stop crying - I am mute but not dead,

I am dying but I am far from sad

Since John hasn't talked since November 26th, we really don't know what he is thinking. He has not made any expression of sadness though. In fact, he has given signs of bemusement many times.

I know that there is debt but my soul

tells me it will be paid in full.

In times like these the sick one has nothing to offer their loved one who stays by their side. This is a spiritual debt, which is why the soul tells him it will be paid in full. It truly is agape love - the highest form - that I see with Debbie and John. He has nothing to offer her at this point except things like bowel movements and hard work. Agape love is in control when someone commits in this way to another, in bold decision that there is no other way. It is then, when agape love is ushered in, that God is intimately involved.

I am better, come back and stay,

hold my hand while I sleep and dream

of contours green by still waters where

we lay unoccupied, unhurried, being.

Where else would agape love lead you but to this kind of peace and tranquility, beside contours green and still waters (a paraphrase of Psalm 23). That is the Valley of Death, you might say, does that mean I think Johnny will pass on soon? I don't know. ALS patients can last months and years past the time that all bets have been called off. But I end the poem with a present participle, and not just any present participle. "I am that I am" is the name the Lord tells us to call Him. And we are told that God is love (1 John 4:16), agape love. Through Debbie's total commitment to love Johnny, the dream comes true. The lake tends to be recalcitrant in this life but through love the waters are stilled, even now, and forever.

So there it is. A butterfly landed on my shoulder and whispered "Recalcitrant Lake" in my ear and this is what became of it. May it bring some loved one peace as they spend the night in the uncomfortable rocking chair next to the bed in the cold, contagious hospital, listening to the periodic shuffling of the nurses' feet and that damned "boop-oop" sound. May the Lord give you rest. Read more!

Recalcitrant Lake - a poem

[To John and Debbie, with love. It has been an inspiration to me to see Debbie stand by my her husband day in and day out. Suffering from the complications of Lou Gehrig's disease on top of a heart attack in November, Johnny has not been able to speak. The agape love she has shown has made all the difference.]

It's not good, not at all

not at all, consuming, gnawing

away at my vitality;

IVs invade, filling an oasis

under my skin with numbing

concoctions making even

my bones tremble and grow soft.

A shaky hold I have, my life

draining its putrid effluent

over my bedpan, soaking the linens

It's not good, not at all,

not at all, as bauds of Pharma

make me sicker, make me dazed

and asinine alarms make me crazy.

I fight vile feelings of pique

My secret hope is that the world

will end tomorrow and take me with it.

For now I am speechless and rigid

I am the emergency in 372, hysterical,

I am the Code Blue!

You're still here, you're still here

I can see you across the way

It's just you and me, surrounded

by the blurry, dry-erase names

that come and go like IVs.

I have my one good eye fixed on you -

deny me not, not once nor thrice.

Don't let me die here, floating

like a starved jellyfish drowning,

depraved in this recalcitrant lake.

You're still there, you're still there;

I can see you between the scrubs,

stop crying - I am mute but not dead,

I am dying but I am far from sad

I know that there is debt but my soul

tells me it will be paid in full.

I am better, come back and stay,

hold my hand while I sleep and dream

of contours green by still waters where

we lay unoccupied, unhurried, being.

- Jim Jordan 1/26/08

Read more!