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Happiness on Hold

We convince ourselves that life will be better after we get married, have a baby, then another. Then we are frustrated that the kids aren’t old enough and we’ll be more content when they are.

After that, we’re frustrated that we have teenagers to deal with. We will certainly be happy when they are out of that stage. We tell ourselves that our life will be complete when our spouse gets his or her act together, when we get a nicer car, able to go on a nice vacation, or when we retire.

The truth is, there’s no better time to be happy than right now. If not now, when? Your life will always be filled with challenges. It’s best to admit this to yourself and decide to be happy anyway. Happiness is the way.

So, treasure every moment that you have and treasure it more because you shared it with someone special, special enough to spend your time with…and remember that time waits for no one.

If God gets the Glory for Newborns and Sunsets, who do we thank for all the Ills of the world.  Who cares? Don’t worry-be Happy!

Happiness is not ones goal, place, or destination.

Happiness is your journey.

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I Heard It’s Christmas

Tis The Season that approaches rapidly, and yet so far out of reach for this fellow. They call it the season of giving, sharing, and the calendar points to one magical day of joyous celebration. Getting to that day is full of anxiety that could easily turn to panic as no one wants to be left out of this celebration. Our minds are consumed with shopping, decorating, wrapping, baking for all these joyous activities that prepare us for this annual event. It is the season of giving and requires a certain measure of personal participation in these various functions if we are to partake in this special day.

This season, for one moment, imagine not being able to wrap your gifts or tie those holiday bows. Imagine not being able to shop till you drop, stand in long lines, lose your keys or forget where you parked your car. Imagine not being able to partake in any of this. Imagine this season you are bound in a motionless body that moves only in different directions by means of a motorized wheelchair.

This is the case with many people who are coping with ALS (amyotrophic lateral sclerosis) or better known as Lou Gehrig’s disease. ALS attacks the neurons that are attached to the muscles. The result is gradual paralysis. Those coping with this disease usually die from asphyxia because their diaphragms no longer work, and 80 percent die within two to five years of their diagnosis.

This season hits me hard as ALS does not allow me to participate in ways I fondly remember. It was my job to wrap all the presents because I did it best, and that contributed to my joy. It was my enjoyment to fill the stockings with the oddest of delightful novelties. Most of all, it hurts this season not to be able to light up my wife’s pretty face with a very special gift. This season ALS forces me to partake with eyes wide open, and a half-joyous smile.

This season would be magical and special if ALS had a gift of a cure. The season seems to be like many before it, a season without a cure, no cure, no where on the horizon.

If you would like to give the greatest gift without losing your keys or your car, consider a gift to your favorite ALS charity. Forget going to the Post Office.  This is the gift that won’t be the wrong color or the wrong size. It will be the gift that puts smiles all around the ALS community including one for this fellow.

Happy Hanukkah  &  Merry Christmas

I ramble…

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Heavenly Nation

Sen. Goldwater in the U.S. Senate (16 September 1981) On religious issues there can be little or no compromise. There is no position on which people are so immovable as their religious beliefs. There is no more powerful ally one can claim in a debate than Jesus Christ, or God, or Allah, or whatever one calls this supreme being. But like any powerful weapon, the use of God’s name on one’s behalf should be used sparingly. The religious factions that are growing throughout our land are not using their religious clout with wisdom. They are trying to force government leaders into following their position 100 percent. If you disagree with these religious groups on a particular moral issue, they complain, they threaten you with a loss of money or votes or both.I’m frankly sick and tired of the political preachers across this country telling me as a citizen that if I want to be a moral person, I must believe in “A,” “B,” “C” and “D.” Just who do they think they are? And from where do they presume to claim the right to dictate their moral beliefs to me?And I am even more angry as a legislator who must endure the threats of every religious group who thinks it has some God-granted right to control my vote on every roll call in the Senate. I am warning them today: I will fight them every step of the way if they try to dictate their moral convictions to all Americans in the name of “conservatism.”
 
Sen. Goldwater, Washington Post (28 July, 1994) 

When you say “radical right” today, I think of these moneymaking ventures by fellows like Pat Robertson and others who are trying to take the Republican Party away from the Republican Party, and make a religious organization out of it. If that ever happens, kiss politics goodbye.   “Mr. Conservative”

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A Prayer for Tim Tebow

“May no one athlete participating in college or professional football ever again experience the horrible diagnosis of ALS (amyotrophic lateral sclerosis). Win or Lose – God Bless.”

The NFL – ALS  Roll Call;

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It’s Not a Pretty Picture

President Eisenhower’s first surrender was to the Knights of Columbus.
Maybe it’s time for those who support injecting Christianity into politics, learn their history.
The revision to the Pledge of Allegiance,  One Nation Under God was signed into law by President Eisenhower in 1954 after years of pressure from the Catholic organization the Knights of Columbus, while “In God We Trust,” which began appearing on coins during the Civil War (human rights), became the official motto of the United States in 1956. What both changes have in common is that they were primarily politically inspired as Cold War propaganda designed to differentiate America from the Godless Soviets.

In the words of John Adams, America was “founded on the natural authority of the people alone, without a pretense of miracle or mystery.”

One Nation Under God?

Although there are several federal and state social-benefit systems in the U.S., a variety of obstacles, such as the high cost of health care and the lack of adequate housing, leads people further into poverty and becomes an abuse of their human rights. Official statistics show that 12.7 percent (or 37 million) of the population in the U.S. lived in poverty in 2004, while 15.7 percent (45.8 million) lacked health-insurance coverage; 11.9 percent of households (comprising 38.2 million people, including 13.9 million children) experienced food insecurity.

I Ramble … priorities, hopes, and dreams sometimes become lost. Lost in the eyes of the faithful.

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This Is ALS Awareness

The Steve Saling ALS Residence

The Chelsea Jewish Foundation, sponsors of The Leonard Florence Center for Living, is pleased to announce that the nation’s first ALS residence will be named “The Steve Saling ALS Residence”. It was Steve’s determination and hard work that is making this residence a reality. For the first time ever, the world will see that an individual with ALS can have a high quality of life with dignity and competent compassionate care. The residence will open in February and we will have the Grand Opening in early spring. Steve and I, at that time, would like to invite the entire ALS community to attend and help cut the ribbon. More details to follow.

Barry Berman, CEO of the Chelsea Jewish Foundation

I Ramble … 1 year later, Steve & Patrick are still smiling – L’Chiam!

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“Out of The Blue” – Randy Kepple

At age 52 Randall A. Kepple entered the gates of heaven on Nov. 11, 2011, at his sister’s home in Carlton with complications of ALS. Randy was born to Robert and Marge Kepple in Shelocta, Pa. Randy’s family moved to Oregon spring of 1964. Randy attended Reedville Elementary and Hillsboro Sr. High. Randy loved to fish and hunt in the great outdoors with his son, brother, nephews and friends. Randy also loved to garden and grow his own flowers. Randy loved to joke around with family and friends. He loved being around family and friends and his home health nurses Kathy, Angela and Denise; his caregiver Mary, and most of all, he loved his son and grandson. Randy lived in Aloha until he moved to LaPine in 2002 then recently to his sister Debbie’s and Dave’s for the last two and a half years of his life where he put up a good fight against ALS.

I Ramble … another ALS patient who put up the good fight.

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Leo Greene-Better than ALS

Battling the pitfalls of disease and depression

Ever hear the tale of the Louisiana Honey Island Swamp Monster?

Pull up a chair and sit a spell.

In the heart of the bayou where forsakenness lives, where the trees eat the light and the water runs black, this humanlike beast skulks for prey. Silent as a corpse, he rises from the bog and enfolds his victims and drags them into his lair.

Trust me, I know. I recently escaped from his clutches.

Not to be flippant, but for me this swamp-monster analogy works.

I’m talking about depression.

It’s hard to say when I first slipped into that darkness – three, four months ago, maybe longer. I didn’t see it coming. I couldn’t find my way out.

According to one estimate, 80 percent of those diagnosed with terminal illnesses experience episodes of serious depression.

“Depression is something that we often don’t want to talk about as ALS patients,” said Chuck Hummer of Pinellas Park, Fla.

It’s time we talk.

Chuck is one of the more active participants in ALS Internet forums, selflessly reaching out to others struggling with this disease.

His battles with depression began in 1994 after the death of his only son. The ALS diagnosis in 2004 compounded the problem, and the bouts came more often.

“The depression periods seem to be triggered by stress or specific events, and I can go from a productive, positive, active person, to a person who feels absolutely worthless, a burden to my caregiver, and I have alarming thoughts of suicide,” he said.

These chemical changes in the brain cloud Chuck’s mind, drain his energy and he withdraws to his bedroom and the refuge of sleep. An episode can last for several days.

“Then for no obvious reason, I will awaken without any of the disturbing mind clutter, feel energized, positive and back in the fight to make my remaining life valuable,” he said.

Antidepressants might have reduced the frequency and the depth of the episodes, but they haven’t stopped them altogether.

Malvena Hill of Auburn, N.H., learned she had ALS in May.

Continue reading →

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Stichting – ALS – I Could use Somebody

“What would you do?” The Nederlands campaign.

Their campaign is asking the public to live in the situation of people with ALS. To help them understand what it is to live with ALS. What would you do as long as you still can? What would you do if you know that you don’t have more than a few years? What would you do if you for example could no longer move? Then embrace everything and everyone as long as you still can. You must embrace life.

StichtingALS                KOL – Kings of Leon – “use somebody”

I Ramble … Yes, ALS is Worldwide.

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Spiritually Speaking

Spiritually speaking, we are remarkable creations of unlimited potential. We are spiritual beings of great imagination and fortitude, and are all bonded as we embark on this incredible journey called life.

To my amazement, I didn’t think it could happen. There are spiritual snobs everywhere. If you have a spirit, you ARE spiritual. So, what exactly is going on? In addition to ancient wisdoms, including those deeply rooted in organized religion, modern day spirituality has embraced a global type of perspective that is getting distilled into those who are spiritual and those who aren’t. With the onset of the Age of Aquarius (according to the ancient Mayan calculation of calendar events pinpointed for the year 2013), our spiritual awakening is ever so near and is getting mixed up with those who arrogantly support a separatist view when it comes to spirituality.

Admittedly, there is a marked increase in our awareness that we are so much more than a body and mind, and as a result, we are exploring many new ways outside of religion to discover our spirituality, and its impact on our wellness. Since 1999, more than fifty medical schools across the country have integrated elective courses in spirituality. There must be something to this, and naturally, business moguls and the spiritual elite have banded together to profit from our vulnerabilities.

The commercialization of all things spiritual is running a muck. There are blatant examples of spiritual snobbery displayed by specially organized groups or people. For example, there are those who purport exclusivity when it comes to exchanges with higher beings or angels, or those who travel in and out of ethereal dimensions by virtue of being spiritually elevated, while the rest of us just can’t seem to “get there” and aren’t connected. The more insidious version rests with the creative application of language. Words that very much support a separatist view such as like-minded and those like us – even though they seemingly support selfless causes.

This preoccupation with spiritual hierarchy is the antithesis of spirituality. The concept of hierarchy is manmade-there’s nothing divine about it. Again, if you have a spirit, you ARE spiritual. It’s just an issue of whether or not you take care of that spirit, just like your decision to take care of your body and/or mind. If we are truly going to have conversation about being spiritual, it goes way beyond religious text, pilgrimages, and psychic connections.

Why don’t we just call it like it is? Being spiritual is the honor code by which we live. It’s not about lighting incense or receiving some symbolic ritualistic blessing by a guru – although accept that when you can. Positive words and actions from anyone are always a good thing. Spirituality and spiritual development is a very sacred and personal journey that requires some attention when you’re looking to utilize the best of what you are.

Spirituality is a shifting of perspective toward viewing the world beyond physical restrictions. That means diminishing the influences of ego (power and control) and emotional limitations like anger, intolerance, or selfishness, and starting to view the world with no limitations or boundaries. As soon as that urge creeps up to indicate a limitation, try maneuvering that feeling into one that is truly spiritual – one that supports an awareness of others and an all-inclusive mentality…provided, of course, that you are spiritually speaking.

EzineArticles

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Disability Activists, Assisted Suicide and the Land of Oz

November 1 – the anticipated/dreaded Dr. Oz show on assisted suicide aired in most places, although syndicated shows such as Dr. Oz often play out on different dates in different locations. Disability activists Nadina LaSpina, Danny Robert, Ari Ne’eman, Julie Maury, Hope Derogatis and Bill Peace were all in the audience.  Danny Robert and Ari Ne’eman got to speak.  While Bill didn’t, there are several times you can see him clearly – looking generally pissed off at the tone and bias of the show.

Every one of them deserves a ruby slipper award for enduring this visit to the Land of (Dr.) Oz.

Ari Ne’eman was invited to write and post an essay on the Dr. Oz site.  It’s titled Death on Demand: Risks and Responsibilities.  Here’s an excerpt:

There are many critical civil rights issues facing Americans with disabilities and chronic health conditions – but the right to die is not one of them. Over the last 15 years, Americans have been engaged in an intensely controversial debate as to whether or not states should legalize assisted suicide for individuals with significant disabilities and terminal illnesses.

These laws – often promoted as “Death With Dignity” – appear on the surface to assist individuals expected to die within six months to request a lethal prescription from their physician. To the uninformed, these laws claim to enhance autonomy to a small number of individuals already at the end of their lives. Yet, as we’ve seen from years of experience where physician-assisted suicide has become legal, the reality is quite different. Far from assuring autonomy, the legalization of physician-assisted suicide has served to diminish true choice by creating an environment in which individuals denied access to necessary health care are made to feel like suicide is their preferred option. By advocating for so-called death with dignity, rather than the support and services people need to live, proponents of such laws bolster a system already denying dignity to hundreds of thousands of Americans with disabilities and chronic health conditions.

There’s a section for comments directly following the essay.  It would be great to have even more disability rights advocates chime in.

You can also watch video – cut up into very small pieces – of the show.  The Oz site isn’t friendly to embeds for video, so I can only provide links:

Do You Have the Right to Die? Pt. 1 - features Danny Robert after a short intro by Dr. Oz.  (In the opening shot, the guy who is to (your) the left of Dr. Oz wearing glasses and a maroon-ish shirt is Bill Peace.  Watch for him in other video segments.)

Ari Ne’eman challenges Montel Williams directly starting near the end of “Do You Have the Right to Die?  Audience Q & A, Pt 1” and continuing at the beginning of  “Do You Have the Right to Die?  Audience Q & A, Pt 2“.

As expected, the show was very biased.  The show opened with a woman who has a neuromuscular condition who says she’s tired of living with it and has family with her to support her – support her when it comes to dying, anyway.  Of all the people on the stage, Montel Williams is probably given the most time, because, well, this is entertainment and he’s the biggest celebrity there beside Dr. Oz.  Williams manages to disparage talk of the “slippery slope” while at the same time advocating for just such a slope.  He’s fluent in the stats concerning Oregon and the eligibility criteria.  Williams is clear, though, that he wants to end it all when he feelshe is ready – no mention of terminality.  And, at the end, Oz the ringmaster of the show announces that he favors assisted suicide – with unrelieved suffering as his criteria.  So good old Oz wants public policy to slide down a slope farther down the hill than it supposedly has in Oregon and Washington.  The audience – from what we’re told by the folks who were there – seemed to be pretty stacked with people in favor of assisted suicide and not too picky about if the eligibility was “suffering,” “dying,” or “disabled.”

And by a strange coincidence, that put them in sync with both Montel Williams and Dr. Oz.

We are extremely grateful to all of our fellow activists who trekked in the downpour that day to get to the show.  Their presence and advocacy were probably the major factors preventing the show from being a total disaster.

I understand that, like Dorothy, everyone was extremely happy to finally escape from the Land of (Dr.) Oz.

–Stephen Drake–  ‘Not Dead Yet’

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“Out of The Blue”

Out of the blue on the wings of a dove
A messenger comes, with the beating of drums
It’s not a message of love

Our children are born, and we keep them warm
They must have the right, to live in the light
To be safe from the storm

Out of the blue, with wings on his heels
A messenger comes, bearing regrets
For the time that he steals

But steal it he will, my childrens’ and mine
Against our desires, against all our needs
Our blood spilled like wine

Over and over we call . . . no one hears
And further and further and further we fall
And though we pray that we soon will awake
It is clear, that it’s no dream at all
Our lives are at stake

I cannot believe, nor even pretend
That the thunder I hear, will just disappear
And the nightmare will end

So hold back the fire ’cause this much is true
When all’s said and done, the ending will come
From out of the blue

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ALS to Health might be in your Head

Over the past decade ALS patients, caregivers and family members have been traumatized waiting to find that cure. For science, it is a needle in the haystack that seems impossible to find.

ALS patients are very demanding and they should be, their illness is one of the worst known to medicine. If there is an inkling something will help they are more than willing to give it a try beyond all consequences. The FDA dictates the rules to medicine and continues to set forth the strictest of procedures. Snake venom, at one time was considered a cure all for ALS. There have been foreign studies that introduce different compounds that continued to tantalize the ALS community. There have been many drugs that ALS patients are determined to try such as, Myotrophin, Lithium, and IPlex which remains out of reach.

As the ALS community clock rapidly tics, desperation for anything helpful takes over.

Could it be that science is starting to think that ALS could start in the mind. The West continues to believe one mindset, we need to be medicated to be healed. If someone offers up a therapy to quiet the mind and began a process of healing from the inside, they are quickly labeled Quacks. If they use the word Holistic, they are scoffed at and labeled Wackos.

The answers to controlling ALS may be right in front of us, yet we refuse because everyone knows the difficulties that surround the history of ALS.

  • What if it were free and easy?
  • What if it required no blood work?
  • What if it required small amounts of time?
  • What if you had nothing to lose?
  • What if it worked?

John Hopkins News-Letter

by Sam Ohmer

Issue date: 4/23/09

Everyone knows that neurons talk to each other – that’s their main job. But neurons also talk to the cells around them. The communication between neurons and support cells is important for the healthy functioning of the brain. But does it play a role in disease too?

Jeffrey Rothstein, a professor of neurology and neuroscience, shows that the failure of this communication can indeed contribute to neurological illness.

Specifically, his group demonstrated that neurons in amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, suffer from a failure to communicate with helper cells called astrocytes. The results appear in last week’s issue of Neuron.

Astrocytes are support cells in the central nervous system that nourish and keep neurons alive. These sidekick cells also play crucial roles in regulating neuronal communication.

Some neurons release a chemical called glutamate in order to pass on their message to the next neuron. Unfortunately, if a neuron gets too excited, it releases too much glutamate, which is toxic to cells in high doses.

Continue reading →

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The Moral Landscape

“The Bible was written at a time when people thought the Earth was flat, when the wheelbarrow was hightech. Are its teachings applicable to the challenges we now face as a civilization?” ~ Sam Harris, neuroscientist, author of ‘The End of Faith’, ‘Letter to a Christian Nation‘ and ‘The Moral Landscape: How Science Can Determine Human Values‘ (2010)

“Questions about Morality are questions about happiness and suffering.”

Harris addresses his arguments to members of the conservative Christian Right in America. In answer to their appeal to the Bible on questions of morality, he points to selected items from theOld Testament Mosaic law, (death for adultery, homosexuality, disobedience to parents etc.), and contrasts this with, for example, the complete non-violence of Jainism. Harris argues that the reliance on dogma can create a false morality, which is divorced from the reality of human suffering and the efforts to alleviate it; thus religious objections stand in the way of condom use,stem cell research, abortion, and the use of a new vaccine for the human papilloma virus.

We read the Golden Rule and judge it to be a brilliant distillation of many of our ethical impulses. And then we come across another of God’s teachings on morality: if a man discovers on his wedding night that his bride is not a virgin, he must stone her to death on her father’s doorstep (Deuteronomy 22:13-21).
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Calling Dr. Gregory House to the E.R.

The latest hunt for an ALS spokesperson has turned up the name of Hugh Laurie. We know him as Dr. Gregory House, that English actor with that one-of-a-kind voice. His mother, Patricia passed away of ALS in 1989 when he was only 30 years old. Not sure if he would be interested in the job, but with his skills of tracing rare and unusual illnesses he would be more than qualified.

I truly enjoy the rough character of Dr. House, who always appears to have just rolled off a park bench somewhere in midtown. From nowhere he shows up in the E.R. at 6 AM, bedside of a very mysterious patient who has arrived at their deathbed. Soon he is surrounded by his four intellectual doctors dressed neatly in white lab coats, ready and waiting for a consultation. This team is prepaired to do a number of things, from CAT scans to MRI‘s, exploratory surgery to luck warm enemas. Later they will meet in a conference room where they list all of their possibilities on a white-board while discussing six different topics at the same time, from major league baseball to open marriage. They have exactly 60 minutes plus added commercial time to save this unusual patient.

Better than a spokesperson for ALS, I believe the producers should allow Dr. House to diagnose himself with ALS after falling several times without explanation. This would allow the weekly episode to continue much the same way Stephen Hawking has lectured Black Holes for over 50 years. We would experience Dr. House rolling around the hospital in a power wheelchair, being fed by his gorgeous hospital administrator and heartthrob while solving case after case with his still intact miracle brain. The possibilities are endless for the character of Dr. House, and a win-win for all of us in the ALS community.

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ALS Head Trauma or Stress?

Are you surprised you’re falling apart?

This case is notable for the fact that the person’s story is so full of ALS creation factors.

This person had trouble in early childhood starting with the fact that the person was given up for adoption. It’s a good bet that the circumstances of the person’s early years and even gestation were stressful.

The stress went on. The person’s adoptive father was often absent. When he was around, the father often administered corporal punishment. So the person was being emotionally and physically traumatized for years.

When the person was in his late teens, he was doing well in competitive swimming. His father made him quit because the person was not doing well enough in school. The person harbored resentment over this for over a decade, basically until today. Harboring resentment is an effective way to make oneself sick.

The person finally reacted to all the family issues by joining the army and going to the Middle East. He said he did it to escape and to prove something. Both escaping and doing something stressful to make a point about oneself are classic ALS creation behavior patterns.

His experience in the armed forces included vaccinations, exposure to toxins and emotional trauma combined with strenuous physical activity. Clearly the escape attempt did not really work.

In addition the use of weapons was an activity which conflicted with the person’s beliefs. Living in a state of conflict creates disease and police and others who use firearms often experience ALS which starts in their hands.

On getting back from the first Gulf War, he got married and took a job which he described as stressful. He continued to ingest toxins in the form of alcohol at night and sixty ounces of Mountain Dew per day! Meanwhile he continued to engage in strenuous physical activity in the form of sports which required a lot of gripping, such as cycling and white water rafting. This toxic ingestion combined with the exhaustion and direct hand trauma of the physical activity probably is partly what triggered the development of ALS in this person.

His behavior got things to the point where he and his wife were separated.

Relief came in the form of religion. He found Christ, and got himself together in a way and got back together with his wife.

Soon he started experiencing ALS symptoms in his hands.

We spoke about two or three years after that.

The development of ALS is related to escape and disconnection and this person is a master of escape. If he had a problem with his wife, he would escape by inviting people over so she would not have an opportunity to discuss it. He moved from his home state to another state to escape issues he was having with his family. After I pointed out his escape patterns to him, he started noticing them himself. One example he told me about was his reaction to a person’s walking up and interrupting a conversation he was having. Although the conversation was important to him, he did not work to continue it. He said, “I escaped…I just walked away and sat down.”

If you wanted to create ALS, you could not do a much more complete job than this person has. It’s all there, the stress, the toxins, the painkillers, the stimulants, the desire to prove oneself, the inner conflict, the religion, the direct trauma to the hands and, most importantly, the escape behavior pattern.

Marty Murry ~ Creating Paradise