Archive for the ‘Observations & Musings’ Category

I’ve lost that rested feeling…

Wednesday, November 3rd, 2010 by annemarie

It used to be that I could take 2-3 days off in a row and emerge well rested. Mostly by allowing myself to rest as appropriate, bask in some silence, boost my mood with some empowering reading, meditation and reflection. Basic conscious nourishment. By day 1.5-2 I could feel a sense of renewal and rejuvenation begin to well up, especially when I limitted noise and TV. I’d emerge from my 3 days FULL, energized, with ideas to spare.

I struggle with energy alot since I’ve switched to peg tube feedings, and I’m trying to find liquid supplements that support the highest operation of my cells. I mean what will it take? Do I have unrealistic expectations? I just don’t think I should feel like shit more often than not. Is that too much to ask? I rarely have caffiene- unless I get a headache in which case a few sips of coffee does wonders!! (So does liquid Children’s tylenol in my morning Myoplex!-42g’s of protien- woo hoo!) I’ve just completed 2 wks of tea from a local Chinese Dr. which seemed to make an impact for a minute…

Currently I’m using Floravital, liquid vitamins, iron and herbs as a supplement as well as Peter Gillham’s Natural Vitality “Natural Life Minerals” and Chrlorophyll, Adrenalift from Macca Magic and fresh juiced veggie juices strained over and over until they work in the gravity bags with out clogging it up. I have a history with anemia, so I can see being more consistent with the Floravital with iron making a difference. The problem I am having with my “food” is that it’s so processed that it’s lightyears away from FRESH. It FEELS lifeless. After an initial 12lb drop I’ve gained 5 back and stabilized at 145 ish. I did buy the Health Master emulsifying blender so this week when my folks come we will play with it and hopefully have a pathway for fresh veggies to enter my system again!

It is a mystery. Am I just making it wrong? Perhaps it’s just that the body needs rest…but then I feel as though I’m resting my way to more weakness! NO NO NO. WRONG DIRECTION!! I have a trampoline by my window now and I can “run/bounce” up to 5 minutes using the support bar. This is a major accomplishment.

And so the Quest remains: Mind over Matter…Do I pick this battle or channel my energy into my writing and say screw it? Is that a choice really? It not easy to pick out what’s the priority when the sands keep shifting…right now I’d settle for feeling rested and being productive RELIABLY. once more…

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#1 Get people on your program

Monday, October 18th, 2010 by annemarie

1st things first: Get people on your program…this means organize your caretaking team, fully communicating what you want and need, posting your mission and creating a charter of care AND making a binder of notes, recipies, preferences etc… Such that anyone can pick it up and contribute in the ways that make the biggest difference for you.

I guess I’ve always been a bit of a lone wolf…so it’s been a process to train people on my care team to know what I’m wanting, needing and looking for with a mimimal amount of frustration. IE: fresh raw veggie juice doesnot equal V-8! And avoiding dairy does infact include sour cream… I’m finding it useful to post guidelines and outline standards of how I want to handle things in and around the house for instance very helpful for everyone.

But let’s take a step beyond the basics~ there comes a time when you have to choose how your treatment will go and what elements it will include. There is an attitude and intention behind it all, something far beyond “make me comfortable” something that traffics in the realm of MAKE ME WELL. You have to create your purpose and get that purpose fully communicated into your family and friends, such that when you can no longer see it’s possible to heal they will hold the space for your full recovery while you self-correct. This is critical to enroll your environment to carrying the banner forward and pull your experience along with it if neccessary. Together you all create a healing ETHOS and ATMOSPHERE.

They must believe in the face of no agreement. If people are unwilling to keep the faith regardless of how you look, what you are saying, what it looks like right now YOU MUST allow them distance and get them out of you’re space. FAITH. KISS MY ASS IT’S GOING MY WAY unshakable, undauntable faith. Held close to the heart by a large group can and will cause miracles. It’s your way or the high way…period. Non-believers need not appear, apply nor approve. Fake it til you make it…you don’t have to know how just hold the space for the way to appear.

This is not easy. But it beats the heck out of being a space suck! Contribute Energy! Be clear that it takes something to hang with those of us that are intensly sculpting life out of every breath. This is the GAME of life folks…Let’s Play!

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The Speechless Speech at InRule

Wednesday, September 29th, 2010 by annemarie

This Friday I had the priviledge of presenting a Speechless Speech at a Client conference for InRule Technology,Inc. Paul Hessinger the CEO, had contacted me after the WGN spot aired this summer and set me up as a suprise for his employees and Client guests. The theme of the day was communication, so I dusted off the Speech on Powerful Speaking and Happiness and customized the acknowledgment exercise for his key client services staff. Early in the morning…as luck would have it- a rainy morning and even though I left myself plenty of time …the lack of cab service made me late…I HATE being late, in fact I make a big point of it in my speech ~ about how your credibility is damaged when you are late… Yeah well I was set back on my heels a bit by being late- not late for the speech mind you- just late as to when I had promised to be there 90 mins before. Blech.

However I felt on the inside it apparently had no impact on the presentation, as the feedback was great and again I am certain this format of a Speechless Speech touches something profound in people. They remember what I “said” their reaction is more than it would be if I clearly spoke the same words as I stood before them. I think it has something to do with ” well if she’s not complaining about THAT, then why am I complaining about THIS…” type of comparison. Whatever the hook is I’ll take it! Here’s some of the feedback:

I have to say I was moved by your message, you definitely got my attention. Thank you so much for sharing. I’m going to embrace your tips on not only communication, but on my goals and in what I want to help me further. The only problem for me is that I’m stubborn in my ways so I’ll have to review your advice repeatedly to ingrain it my spontaneous conduct.

Finally, I overheard from some clients that they were similarly affected by your presentation like I was. I’m sure that Friday’s meeting will change the habits and patterns of quite a few people. Thank you again for being a part of our meeting.
Sincerely,
Jeff Enzinger

Afterglow still abounds from your contribution -SO many people were touched, beyond words.
Paul R Hessinger
Chief Executive Officer
InRule Technology, Inc.

Anne Marie,-I very much appreciated your presentation today at InRule’s meeting. Congratulations; you have certainly found your voice. I was transfixed by your words. I wish you all the best. Know that you have touched my life and I am better for it. Thank you. Best regards
John R. Rymer | VP, Principal Analyst
Forrester Research, Inc.

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Listening to Godot

Saturday, September 18th, 2010 by annemarie

Most of us pay lip service to the concept of our body as a temple in which our soul resides; until we are sick or aging that is…Then we check our reflection and see how accurate and grounded in reality that heavenly phrase really is.

The magnificence of a healthy properly functioning human body is indeed a temple without equal in our physical world. No Cathedral, Synagogue or Mosque; no matter how stunning comes close to our individual house of God. Our “skin Bag” is mistreated, inflated, abused, starved and more often than not poisoned by a mismanaged food supply. Forced growth and chemically altered food like products populate 85% of our grocers shelves…Somehow corn is everywhere: from plastic cups to plasticized foods which are eaten more than the natural vegetable itself.

Somewhere we as a people went off. We forgot God lives here…in us…through us…and our bodies are a work of art, a fitting temple for the divine. An instrument for the expression and expansion of the magnificence of God that each and every one of us is here to be. I had forgotten, but now I remember. I was blind but now I see. It’s the God in me talking to the God in you…PSST! Wake up!

Vote with you fork. NO FAKE FOOD. Honor you body as you would honor your God’s house, from who you share it with to how you fuel it to the products you use…1st do no harm. 2nd use nothing you can’t pronounce. 3rd if you can’t eat it don’t put it on your skin. Use premium fresh local organic food whenever possible. When you are healthy you may not notice that big a difference, I promise you once you deal with a compromised immune system you notice everything from the effect of shampoo to the energy drain of a soda. Why stress your system?

I’m not saying go dip yourself in cherub dust and become a freaking angel overnight! I’m saying get conscious, make more choices that empower your health and wellbeing and mind and spirit.

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Balance isn’t Bullshit.

Sunday, September 5th, 2010 by annemarie

I have a former boss who once told me “Balance is just a conversation.” while urging me to spend extra hours on some project or another…I can’t recall the project because it was always something at that job…the results were never enough even when you exceeded your promise.

Balance is indeed a conversation and I dare say a worthwhile and honorable pursuit. We are a culture that worships extremes. Fascinated by the highs and lows of the human condition, we celebrate extreme effort, ultimate this and minimal that…as if the midway were a dangerous and all together unsavory place to be. I understand. I’ve never wanted to be normal and have relished being different, exceptional and even weird. However I believe we are coming into a new age, one in which balance is the key to wellness if not a direct pathway to happiness and being a well adjusted human being. Balance to me means tending to every domain of my life and moving things forward in all of them weekly if not daily. I don’t want to be great in just 1 or 2 areas, I want to be fully expressed in all areas of my life and that takes attention.

I see a shift coming, albeit slowly, from excess to moderation as a practice. Perhaps it’s the silver lining in our recession, this turn towards fiscal sanity and slowing our roll a bit…though I assert we are still too plugged in to information overload for our own good more often than not. Extremes are no longer the answer. Each individual needs to find the balance that’s right for them. I was just reading a series of essays called “New Cells, New Bodies, NEW LIFE” by Virginia Essence,ed. and was struck by this paragraph:

“Man will again recognize his relationship to nature and will bring inner balance to himself and his universe. He must bring balance between work and play, activity and rest. It is in this point in time that there must be brought about acceptance and new perspectives.”

I am an easy sell re:balance, mostly because it makes me happy and it’s sustainable. I have a tendency to work more or overextend myself to prove my worth…but that never made me happy~just tired! Oddly enough when I practice balance I am naturally more productive. I think better. I write more. I have better ideas. I don’t mess around or elongate trivial tasks because I have to make space for the activities that give me balance, make me feel nurtured and cared for. The more cared for I feel the more I’ve got to give. I like giving, it becomes me. I no longer give til I drop however and that’s due to my pursuit of balance.

Death by altruism is death none the less.

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Morrie and Me

Saturday, August 7th, 2010 by annemarie

You’d think I’d have read it already. But I have not.
I began reading last night and was struck by the similarities between Morrie Schwartz and myself besides the specter of ALS. I too am a coach, a humanist and a religious mutt. We share a profound love for dance and a passion for books. My skin has also begun to hang from my bones like a chicken skin off a soup bone. I too have the experience of being a “lightening rod” of ideas! It’s almost a torrent of channelled insights, like a hyper active radio signal to the universal creative mind.

I am wholeheartedly aligned with Morrie’s stand; “Well, for one thing the culture that we have does not make people feel good about themselves. We are teaching the wrong things. And you have to be strong enough to say if the culture doesnt work, don’t buy it. Create your own. Most people can’t do it. They’re more unhappy than me – even in my current condition.”

The clients I have and participants in my Master Plan program find divesting themselves of the trivial, as Mitch Albom does in the chapter “Taking Attendance” to be extremely valuable for their productivity and happiness. They then begin to attend to their personal spaces: Mental ,emotional, physical, social and spiritual space creating connections and relationships that foster wellbeing, as well as practices and scheduled times to manage these spaces and relationships powerfully. This is how I coach.

I keenly feel the suffering of others and cry when ever I see it. I have a standing date with “Extreme Homemakover” for my weekly “Good Cry”, it’s my guilty pleasure. I can more easily be moved to tears for others than myself, like Morrie, I have very little self pity. I completely identify with Mitch’s observation on page 63, that Morrie looks at life from a different place…a healthier place. A more sensible place. That mystical sense of clarity rings true for me…and I keep creating pathways for others to find it for themselves, WITHOUT having to look death in the face first!

Though from the story thus far I see that Morrie had this wisdom long before ALS had him…I was more like Mitch overwork, over altruistic, stretched and exhausted befor the wisdom of how to live smacked my upside the head! I’m sure I’ll have more about Morrie and Me as I read but this is a remarkable connection with a man I only know through Mr. Albom’s fanatastic “tuesdays with Morrie”.

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How to tell if your work environment is toxic…

Monday, June 14th, 2010 by annemarie

You know your work environment could be toxic and unhealthy when…

Your fight or flight resonse is activated daily and you are not a skydiving instructor.

Management by threat is a common practice. Yelling, swearing, being called a criminal or the enemy when results are low etc.

The enterprise breaks it’s promises to you at their convenience, to make things easier for them.

People eat at their desks to get more work done, or because they can’t get away.

Your work day is longer than 8 hours and the need for breaks is discouraged in ANY way.

You take a vacation only to spend it on the couch because you are so drained. Or you often get sick on your annual vacations.

Your company calls you at home when you are sick or on vacation.

You dream about work all the time and in those dreams you just can’t win!

The enterprise has a “No Gossip” policy, and yet the upper management/ leadership talks about people all the time; often under the guise of tending to their training and development.

You are regularly asked to volunteer your time at any activity that moves the business forward.

Overtime is not tracked, acknowledged or paid with out a government audit.

You have the experience of failing more often than not.

The staff are honored and acknowledged like self sacrificing hero’s, and the pay is low to moderate. This could feel like you are being paid in acknowledgement versus cash.

The “work” begins to take you away from your friends and family.

As you look around you notice a majority of the employees overweight, and they have gained weight in that workplace.

There is a cultural conversation about the “gainers and the losers” where gaining weight or losing weight due to the rigors of the job is “just how it is”.

Different standards of behavior are applied to people depending on the results they produce.

There is a palpable incessant atmosphere of emergency fostered by the management regardless of the results.

You notice that several of the senior staff have strange auto-immune disorders, or it seems like a statistically significant number of people are battling illness.

You are discouraged in any way from taking the appropriate amount of time off for a surgery or any illness.

These are some clues to an unsustainable work environment, in which people become ill and are susceptable to auto-immune disorders. It is written in a tongue in cheek manner but the impact of a toxic or unhealthy work environment can be disasterous~I am serious as a heart attack or ALS.
There are many other indicators of unhealthy work environments, but if you are dealing with more than 3-4 of the above I strongly advise you to consider employment elsewhere. I have stated before that I believe my condition was triggered by a high pressure, long hours, always in an emergency atmosphere that included most if not all of the above elements. I was altruistic to a fault. I thought I had found my “right livelyhood” and that giving myself away was what I was suppossed to do. Back then I didn’t know I needed to take care of myself first. I trusted my company and my mentors and surrendered to the intention and mission of the enterprise. If I wake up 1 person and stop them from doing what I did, I have done my duty.

May you wrap yourself in Self Care and avoid excess in all areas including altruism, it is the same as an addiction to any other substance~ harmful in the overindulgence. One must care for oneself if you are to give consistently over time and be well.

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Managing emotions: News we can use!

Monday, June 7th, 2010 by annemarie

I have recently been studying the work of David Rock, “Your Brain at Work” and I love what he says about managing emotions in the workplace! It might be my heightened sensitivity as the symptom of Emotional Lability impacts my life, however I found this to be extremely useful. Now I haven’t quite synthesized this all the way into uses for people with a chronic health issue or a serious health chalenge but the mechanism would be the same.

First it is important to note that we as human beings are threat sensitive, and that’s not a bad thing. We evolved that way- he who deals with the threat 1st lives longer and prospers. The 2nd thing is social threats occur in the brain THE SAME WAY AS A REAL PHYSICAL THREAT. So when someone tells you, “Well it’s not like they had a gun to your head…” You can now say, with certainty, that it felt that way and your brain doesn’t know the difference. If all doctors and Bosses were cognizant of this I assert the world would be a different place. The experience of being threatened shuts down the capacity of our pre-frontal cortext (PFC for short). Our PFC is the gate keeper to higher cognitive functioning, so when it is shut down we have little ability to think, make decisions, our field of view shrinks and we miss things we would other wise see.

When we get reactivated by a strong emotional response, or any emotional response for that matter; we have a choice in how to handle it, but we need to act quickly! We can suppress, express or label or reassess. Suppression is how humans normally handle emotion and we are socialized to do so – especially men. “There’s no crying in baseball!” for example. However supressed emotions have a nasty consequence: memory decreases, the PFC capacity shrinks, problem solving decreases AND the blood pressure of the people around us goes up! Even when they have no idea what happened they can tell when you are suppressing and will be on eggshells about it.

Expressing is great if you are an actor currently on stage, however expressing can wreak havoc in the workplace, get all over others and is “maladaptive” according to David Rock. By maladaptive he means it will get you fired and no one will want to work with you! So what are we left with? The solution seems to be to label the emotion quickly and release it ( catch and release I like to call it!) or, when dealing with a strong emotional hit: reassess or reframe ~ and fast before it becomes your mood! So catching yourself mid-feeling as you are about to go into a tizzy and STOP- label the feeling~ “WOW That made me angry!” and release…this diminishes the impact immediately. Or reassess- or reframe what ever you heard, saw or experienced that caused the emotional reaction be it a traffic jam, a percieved attack on you or whatever. For ex: your boss saying “Hey I want to talk to you about that project later..” isn’t neccessarily a bad thing. Don’t go there. Reframe it: Hey maybe he likes my work and has an idea that will make a difference. When you need to reassess on the fly- use humor. Humor immediately reduces that threat response and gets you back toward reward or happy.

It seems that our facility with reassessing an emotional threat response is a keen indicator of our success in the workplace as well. Our effectiveness/environmental mastery, job satisfaction, optimism and positive relationships are increased as we Reassess versus Suppress. Maximizing our inner processing of information takes exerting some cognitive control of our emotions. We can all be trained to do this.

I have been an avid student of cognitive control for 23 years ever since I read Howard Gardner’s, 7 types of Intelligences in college. I was not very effective at first. In fact it took being knocked off my high horse a few hundred times by life to get real with myself and humble enough to really begin learning. Some of us just have to do it the hard way! Just so you know being in Mensa from the age of 14 doesn’t mean shit~ it’s being willing to apply the brain power that gets you places. At any rate I kept searching and studying~ for the most part I was completely run by my emotions, but I remember the exact moment I got for myself the difference between allowing your emotions to run you and you being able to impact the emotional weather in your life. (Notice I said impact NOT control. Our emotions are vital for survival and any discilpline that shuns them should be run from at top speed! Suppression leads to poor health, and science is proving that as we speak!)

In March of 2002, I was attacked and sexually assaulted. I threw myself into work as an escape while I dealt with the investigation, arrest and trial etc. One thing I dealt with is similar to the symptom of Emotional Lability I deal with now: My emotions would threaten to bubble over and take over the moment. I would be in the middle of a conversation at work and have to put the person on hold while I had a quick cry then collect my self and get on with my job. What I distinguished for myself is that emotions would come and go; my emotional weather would change, but I held the emotions in my hand I was not the victim of them AND that meant I could CHOOSE what emotion to honor at any particular time. When anger and grief were/are overwhelming I can choose JOY. Happiness. LOVE. In the moment I can choose what I honor and experience by calling it what it is and Choosing a distinctly different experience. This is cognitive control: MINDFULNESS and transformation. I got to say how my day would go, and when I exercised that choice, my attacker didnot win – I WON.

Before that experience I had cognitively understood the concept but I had not integrated the direct experience of doing it: intentionally altering my emotional state to better serve myself and those around me. I think this is an important skill for people dealing with a serious health challenge to acquire. It will preserve caretaker relationships, one’s own sanity and give us power when dealing with the impact of any medical decision and with the whole miasma of fear that is palable in almost any interaction with the health care system. David Rock makes a fabulous point about our ability to reframe or reassess emotional reactions~ the more we know about how the brain works the more facility we have with it. So there is a pathway: research , learn about the brain, read and PRACTICE. You are not your thoughts, you have thoughts. Mastering this is an access to Joy in the face of anything.

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The luckiest patient…

Thursday, June 3rd, 2010 by annemarie

An unexpected benefit of my trip to Washington DC For the ALS Advocacy Conference, has been a marked new perspective on my condition and the particulars of my condition. I now believe I am actually the Luckiest Patient. As I met fellow patients and their families, and I heard their stories, their backrounds and about their journey with ALS; I became more and more grateful for my friends, my family, my work (which is my purpose), my home and most of all my education and training.

There may not be another person better prepared and trained to deal with the mental, emotional and spiritual impacts of Lou Gherig’s dis~ease. I am left with the sense that each and every moment of my life has lead me to this juncture, and I may very well be perfectly placed to use this circumstance to make a difference. I have already been working on a program for patients who are dealing with a chronic illness, as well a a workshop for caregivers now that I see the need for self care in that community! I believe we should live well as long as we can…that we can optimize our wellness in the face of any circumstance or diagnosis. In fact I think living powerfully in the face of a health challenge is an art, but it is an art that can be taught!

Is the progression of my ALS slow because I have a good attitude or do I have a good attitude because my progress is slow? I get to say~ so I’m saying that my attitude and behaviors keep the disease at bay and suffering to a minimum. There is some progress…I have noticed more fatigue, I’ve lost more weight, another 1/2 a shoe size~ I’m down to a 7.5 from a 8.5-9 in boots just 6 years ago. My speech is very touch and go now and cannot be counted on, my hands are even weaker. But over all I act like I am well most of the time. I am a homebody who goes out to the office 3 or 4 times a week and the occasional dinner or event. I share this because in January of 2009 my then Doctor said I’d have a very short life span, but I wasn’t buying what she was selling.

The more I research healing the more I am encouraged to manage my mind and thoughts to heal, recover and be well. I may not cure myself, but I might as well hang out and be as well as possible til there is a viable treatment that doesn’t kill you in the process! And besides, perhaps the point for those of us who have had a yellow light on the road of life ~ what I call the gift of ALS~ perhaps the point is for us to remind all the rest of you to act like you have a yellow light too, before your final red light. I mean, how many people die in an instant? There’s no warning, no time to say what you need to say, no time for that last trip or last vacation or great adventure…just POOF! Gone.

I think I prefer the yellow light. I get to acknowledge all the people in my life, especially the one’s who have hung in there and not run away in the face of their own mortality. I get to focus on my work: The Master Plan program and the difference it makes, my writing, creating new programs that will continue to impact people long after I am gone. Pretty to think so at any rate. For this reason alone I am convinced that I have time: enough time for me to get the ideasthat come to me out of my head and into a form that can be used to make a difference for others. All these great ideas must be coming to me for a reason! I’m just thankful that I slowed down enough to listen and take notes…and that’s yet another reason I’m the luckiest patient!

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ALSA Advocacy Days report:

Thursday, May 13th, 2010 by annemarie

Well it was interesting I’ll give you that. I met some remarkable and brilliant people. People who are doing their best in a sincere way to make a difference. I met 2 ANGELS who took care of me on my flight home. Who knew ANGELS lived in Evergreen Park! But they DO!

I had the opportunity to reconnect with old friends, meet new committed and inspired people and thoroughly enjoyed being in our nation’s capital.

The ALS Association doesn’t know it but I went there to this conference to see how they operated and to evaluate wether or not to fully get behind their fundraising efforts…(especially since several friends of mine are doing the upcoming walk in my honor) frankly I was not overly impressed with the organization as a whole. There is a lack of continuity and accountability in their speaking, no clear promises or objectives with deadlines, and a penchant for not answering questions in a straightforward fashion. The frustration of the patients present with the lack of results was palpable. There was also alot of numbers being thrown around that didn’t quite add up, and the feeling that some leaders of ALSA were unprepared for their speeches. This isn’t just my opinion but was a sentiment echoed by presenters, researchers and attendees alike. It seems that they would benefit from a tightening of their focus, and standardizing the efforts of their chapters, or at least offer folks some structures that would support them making a difference in their communities. If you are listening ALSA~ I have some ideas for you that would make a difference: especially in the areas of planning, structures that empower people and also patient services. I know you don’t mean to be disrespectful or appear lethargic but you do none the less, especially when you appear to be unprepared. I dare you to contact me and create a new way of operating. Just so you know this is my area of expertise… I used to be personally accountable for the productivity and performance of over 300 volunteers in a 7 state area and produce 25-70 events per week.

Having said that there were pockets of brilliance: ie. the St. Louis Chapter’s Respite program for Caregivers was extraordinary and a perfectly replicatable model that could and should be implemented throughout the country ( More on this later!) and the Chicago chapter has an effective fundraising arm and they occured as one of the most organized chapters. I was informed by many of the breakout sessions, and particularly interested by the brain research being pioneered by Theresa M. Vaughan at the Wadsworth Center, NY State Dept of Health and Dr. Melody Moore Jackson at Georgia Tech, as well as the research in the cognitive impact of ALS by Beth Rush from Mayo Clinic in Florida and the extraordinary work of DR. Micheal Benetar and his team at Emory University in the area of Familial ALS. The 10% of ALS patients with FALS appear to be underserved in many ways and Dr. Benetar’s team is looking at ways to impact this as are several families who I had the profound priveledge to meet with.

All in All, I’m glad I went. It was my last independent trip to be sure, and it took more energy from me than I thought even though I allowed time for rest and restoring myself. I had a few great meals, some excellent Champagne~ Drappier Grand Cru 2000, some delish mojito’s and better company.

Here’s my take on the fundraising: Walk the walks… I understand the importance of doing something ! I’m just saying take a look at where the money you raise is going… ear mark it for research, or respite or whatever your interested in, you have that right. Tell then what you want them to do and then hold them accountable for doing what they said.

I am looking forward to creating strategic partnerships with many of the people I met at the conference.

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