Posts Tagged ‘ALS Experience’

Learning how to live…

Wednesday, September 15th, 2010 by annemarie

So why is it people with ALS who are out there talking and blogging are so damn inspiring? Many of us have a similar tone, humor and directness about ourselves and our situation. We are a loving if impatient lot, with plenty of material presented by life, the loss of functions and the medical system to fuel our dialogue. I think we are the WAKE UP CALL, it seems people are waiting for something…and what’s wanted and needed is for them to wake up! And take control of their own lives.

So you can learn how to live from those of us who are learning how to die. As you hear us confront the loss of simple pleasures and functions you can more greatly appreciate yours. Do me a favor and today appreciate your necks…give thanks for your neck and it’s stregnth and flexiblility. Today I’m wearing a neckbrace for the 2nd day because my head is too heavy for my neck as I sit at my computer. So be happy about your working thriving neck.

Do my a second favor and unplug from your media swirl today and sit in silence. Do some journaling. Breathe. This isn’t for me this is for you. Most people I see are not present…to anything. They are so wound up in the constant barrage of information and reacting to it they barely register an original opinion. Sit. Breathe. Think. Cry. Smile. Get present to the wondrous amongst the ordinary. Make this a daily practice. Take back your life. Listen to your own voice…ask yourself “What do I want?” And sit there regularly until you hear a clear answer.

Remember the play, Our Town? Emily says,”Do any human beings realize life while they live it? Every minute?”
Narrator: “No.”

Wake up. Pay attention. It’s your time. Savor your life and the details in it. This is really it, you know.

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Stepping Away from my Identity

Saturday, August 28th, 2010 by annemarie

So as you know I have been an inconsistent blogger recently, I took a break on my recent vacation as I entered into an inquiry with myself regarding my identity…my concern being that I have now been indentified so closely as ” having ALS” that it may be interfering in any opportunity I may have to heal. As I spent my vacation delving into research and reading about “healing beyond the realm of reason”( see Caroline Myss, Defying Gravity) and other alternative ways of looking at my condition; including writings from people who say they have stopped the progression of ALS in their own bodies: I was confronted by the extent to which I have been profoundly resigned about my condition/ALS/diagnosis.

I, who keep saying, “I’m not buying what they are selling…” had indeed bought much more of the farm than I thought I had! My resistance to engage in the thinking required of someone out to alter their cellular environment was shocking to me. The depths of my resignation was undistinguished until I began to shine a light on it with this inquiry. The meditations were difficult as I bumped up against the diagnosis and the label of ALS and wha.t it had come to mean to me. When I was young I used joke and say “Labels!” with a snort of disgust… as if one could capture the essence of someone or someone’s work with a label. PALS or person with ALS, had become a label for me that I found restrictive as I am SOOOO much more than that. Folk singer is to Bob Dylan as PALS is to me; and I found that it interfered with my ability to HOLD A VISION of healing and being complete with this challenge in my life.

I have chosen to look at my situation from a new point of view, as if I had never heard the words incurable/terminal etc and see the possibility of healing newly, with new eyes. Not some woo-woo “Magical Thinking” sort of realm of possibility but in a real live palpable restorative nuitritional spiritual focus of “This shall be!” type of possibility. I am willing to entertain and put my faith in the fact that science doesn’t know everything here, indeed it may be blinded to what’s possible by a limited paradigm. I keep having a vision of a treatment center that combines the latest technological advances like the pacemaker for the diaphram with the alternative treatments of biofeedback assessment, homeopathy, diet, cleanses and removal of mercury/amalgam filings in the mouth etc…as a pathway for treatment for people labeled with ALS. Personally I’d like to try HGH or human growth hormone to see if I can restore some balance and muscle function in my legs and hands. I want to remain independent for as long as possible and infact work to regain what I’ve lost!

While in California, I exercised more than I have in a year, in the pool, doing tricep dips on the stairs of the pool, walking laps around the resort watching porpoises play daily off the coast not more than 25 yards away at times. My whole relationship to my body and what it can and cannot handle altered on this trip. During my 1st week back I can feel myself slipping back into habits that reinforce weakness versus bolster my stregnth…This inquiry has been a good one. I am redefining myself and how I am “acting”. I am unwilling to play the role of “suffers from”, I want to play the game of “recovers from”.

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Speech by Andrew Ragan

Monday, July 5th, 2010 by annemarie

Speech delivered June 30th 2010
ALS Open golf tournament, Albany NY.
Raised $101,000. for local ALS clinic

This is the 20th anniversary of this A L S Open. I am compelled to thank you for so much . With out your compassion and generosity; I may not have been able to tolerate the every changing terrain of this journey. Certainly the Lewis Golub center would not exist today. Scattering suffering A L S families adrift among an ill-equipped medical community. An A L S diagnosis is not only scarey for the patients , but also for our physicians . Doctors are generally not familiar with all the variations of progressive symptoms. The frustration of incurable conditions can cause the diminishing quality of care. I dare say we are categorized and cast off. The center is a life raft in turbulent sea; and YOUR keeping us afloat.

I wish to express our appreciation by way of sharing some personal experiences.

Those who do not yet know me personally; I am your peer. My name is Andrew Ragan. Just 4 years ago I was actively participating in life as a: husband (been together 22yrs), father, community supporter, and professional conducting business globally. With 80% travel it is safe to say; I am familiar with personal sacrifices and the stress of meeting performance obligations. It is from this perspective I am asking you to help the Lewis Golub Center meet their financial needs. We are Grateful to you for taking time out to learn more and offering your financial support to the Center today.

What they do for families facing over whelming ever progressing challenges makes them extremely deserving.

I have been called courageous, brave, strong, and told that a cure is just around the corner. The truth is far from reality. The center provides life enhancing services we draw our strength from.

For us the center’s mission bridges a gap and consolidates vital resources. Such as adaptive expertise, medical guidance , emotional support for both patients and our caregivers.

I still remember walking in years ago; being honestly and compassionately told the truth of what to expect and most importantly that we were not going it alone. The loneliness of this disease could be overwhelmingly under estimated.

Thanks to your continuous support to the center; I can be part of our community and my families life’s for a bit longer. Your support has allowed me to see my boys grow through participation in sports, cub scouts, religious & scholastic milestones. Now: Participation with family time becomes the most valuable asset we try to accumulate.

Professionally, I would like to share with you a personal revelation. I never truly understood the impact of the corporate community service programs: I routinely sponsored. Years of posing behind large poster board checks as a benefactor. Blindly already thinking about my next business challenge. Never thinking I may be a beneficiary of such an event . I DO NOW!

Your contribution directly allows the center to operate; providing guidance for a dignified life with A L S.

The List of services is extensive some of what they do all in one location is unique. Especially important for people with A L S; considering their travel difficulties. Always available to help out with the crazy situations that we get ourselves into. The centers Medical guidance such as feeding and respiratory solutions are planned. Adaptive equipment is discussed and coordinated with vendors.

They have a vast loaner “closet”. It is more like a warehouse full of: used chairs, walkers, lifts, and similar supporting devices. Depending on ones perspective. Viewing this chuck full closet is a stark reminder of my “new peers” that have already yielded to this disease. Although; I will return the favor, I have no intention of parting with my stuff any time soon. Some would say how courageous, but those who know me intimately think I am just a hoarder.

Visiting the center always starts with a bit of trepidation. Kelly always states: “remember they are here to help.” Indeed they are, so much that they are weaved into the fabric of our lives; and YOU are the thread keeping us together. We could not imagine not having this proverbial security blanket.

The real courage is displayed daily by our care givers. They are Unsung heroes who would be warn down to a stump from the daily grind. If it was not for the centers after hours support groups. Offering counseling on how to cope with the strain of their challenges; and what is appropriate to tell our 6 & 8 year old sons about their father.

Scientific research hasn’t produced any comforting results. Especially if we consider the amount of time and money spent since either identifying or immortalizing this condition. I would venture to say you collectively have helped more patients directly than any other A L S campaigns. The research efforts will pay off someday until than; you are truly appreciated and needed. It is grass roots efforts such as this event that keeps up the momentum. A L S research really needs to become a crusade not career paths.
Your involvement is a call to arms. Thank you!

This is a perfect example of the difference your community involvment can make- it makes us feel less alone in our fight. It touches us more than you may ever know, in fact it touches people you will never know. So Go on with your bad self and get involved!
Anne Marie

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Friends of PALS~ chickenshits need not apply.

Sunday, May 16th, 2010 by annemarie

There were many side conversations I heard at the ALS Advocacy Days in DC, but by far the most disturbing for me was the prevalence of stories about friends and family of people with ALS disappearing after the diagnosis and onset of serious symptoms. Every single family I spoke to had a story about this occurance, it was referred to in an off hand and “of course” manner that was shocking almost as if abandonment by former friends was just another symptom of the disease. I did not seek these conversations out, nor was I looking for evidence; they were simply happening around me. I guess I had hoped my own experience with this was a rare an infrequent happening. Not so Much.

I believe Mark Twain said something about, “Misfortune tells you who your real friends are…” The overriding sentiment for the friends Missing in action was “Good Riddence!”, however the disbelief and hurt experienced by the families and the patients was still evident.

Some of you may recall I had a “best” friend who had stopped inviting me over to her home after a pricey redecorating job, out of her concern I would wreck something with my new found clumsiness. That was the day I resolved never to have a friend who put things before people~ If you can’t afford to break it you can’t afford to buy it. You would think a decade of friendship would warrant a bit more respect. I also had prospective clients change their minds after having said yes to hiring me as their coach…several of them disappeared only to pop up months later and confess, ” I just couldn’t watch you struggle to communicate.” Even though that communication was only being done for their benefit. These situations hurt my pocket book, but were more disappointing from the stand point of not being allowed to make a difference and that opportunity to make a difference is what has kept me going. However, none of my experiences held a candle to the horror stories I heard bandied about the conference.

There were the inevitable stories of spouses leaving, but the worst was a tale of how one man felt cheated by his wife since he blamed her for not telling him ALS ran in her family. He yelled at her caretakers, admonishing them not to work out her joints and legs or make her special food…”We’ve moved on!” He said to her support people, meaning we’ve left her to die. Or the friends of the wealthy woman who sat with her out of guilt, but didn’t have the stones to deal with her and her comfort. In this case the caretaker came in after an hour and the “friend” hadn’t been able to apply the eye drops that are needed to ease her vision , because her eyes no longer blink. “Eyes creep me out! I don’t know how you can do that!” Said the woman who wore plenty of mascara…
Dante and I are working on a new level of Hell for these people…

Weak suck pin weany pablum puking scum maggots…I mean really! Strap on a pair! If we have the courage to live through it, the least you can do is watch and learn. Life is Fatal. Get over it.

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