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.

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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

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