Archive for the ‘ALS Thoughts’ Category

NAPS! glorious NAPS!

Tuesday, September 21st, 2010 by annemarie

It’s always nice when science gets around to making you right isn’t it? Case in point NAPS. I have been indulging in naps since I left my job in 2006, and I swear by them as an access to productivity. I didn’t know why; it just felt right and I always awoke refreshed and ready to go again after a nap. In fact for the last 3 years I divide my days in half…as if I have 2 mini work days in one. I even timeblock for it…Tuesday mornings are blogging, personal time and chiropractor appt. after I set my assistant up I nap…waking at 3 or 4 and then I’m in “work” mode for a few hours again. Thursdays start with a 7am mtg so I factor in a nap at either 10am or 2pm and split that day up as well.

Now new research tells us why…A quick 70 minute nap is like hitting a refresh button in the brain. According to Matthew Walker,PH.D. at the U of C Berkley Sleep and Neuro Imaging lab: the Hippocampus clears out, short term memories get put into long term vaults. Your Pre Frontal Cortex gets a break so you can power it up again with a bit of glucose and you are on your way! So instead of the best 3 hours of productivity happening only 1 time per day you get it twice! SWEET!

Now -why the hell am I sharing productivity tips in my ALS blog? 1st- it’s what I do. 2nd- when you are dealing with a chronic illness and you have a sense you have stumbled on something useful for humanity it’s very empowering to be vindicated by research and have your intuition proven correct. I’ll take my victories where I can get them! Almost every client I have resists my direction to sleep more…naps are for children is the attitude I get…well perhaps we need to all be more childlike then. There was wisdom in our naps. Benjamin Franklin and Thomas Edison are just 2 of the prolific minds we know of who indulged in naps…I don’t know about you but if I can tap in to that, I’m all over it!

Pushing through/powering through/caffeinating is antiquated thinking. I believe it’s harmful to the body if done consistently. Be good to yourself. Go take a nap!

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Let’s talk about time, baby…

Saturday, September 18th, 2010 by annemarie

People are always asking me about time: Where do you find the time? How do you manage time/ Don’t you get freaked out by time passing? etc etc

Here’s the thing: time management is a missnomer…a lie…no one manages TIME! Time just is. It’s like money, only real and valuable by agreement. It might be a dimension but we all get the same days, hours and minutes. How many is a question mark. So no one actually manages time~we manage ourselves in time. Once you really get that you have got the keys to the kingdom.

I do alot of time blocking…essentially I plan my work and work my plan like a samuri. Every minute of planning saves me 10 minutes in execution, so says te research. I plan for about 2 hrs a week. I block out large periods of uninterruptible time for rest, unplugging and writing or thinking. I treat TV like candy: a treat not to be over indulged in. I manage myself in time to be where I said, to do what I said more often than not.

Basically I don’t worry about time I worry about me. My mindset, my pace, my energy, how long does it take me to do things now that I’m slowing down…do I need assistance? I also manage the conversations I’m in. Language gives life to our world and creates EVERYTHING. It’s mighty and magical. I manage the conversations I have with myself AND those I have with others. All my results and what I produce are a function of me managing my conversations OVER TIME. When I screw up or drop conversations out (with myself and others)~there are no results.

Given my experience of my ALS symptoms I am an impatient woman. NOTHING moves fast enough for me! Instantaneous is slow to me. I have a lot I want to accomplish before I exit stage right! and I’ll probably die trying to get it all out there. So I need every edge I can get. My plan gives me that edge. It helps me not worry about time and it’s inexorable pace, and to remain positively focused on my pace, my mental and emotional space, and managing the whole of myself in TIME. That’s why I called this process the Master Plan. It allows me to ongoingly generate myself as an empowered patient in the face of no treatment, shoddy care, no cure, fatigue, further diminishing capacities…one of my empowering conversations I have with myself is KISS MY ASS IT’S GOING MY WAY! And that includes my view of time.

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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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Origins of the Master Plan: Part 1

Wednesday, September 15th, 2010 by annemarie

My life was turned upside down in 2006 when I found myself unable to do my job due to my disintegrating speech. I resigned in January and it took 7 months to get my replacement hired so by July I was exhausted, suffering from constant jaw pain and a regular headache that wrapped around my head like Brett Micheal’s bandana. I had built a life around my voice, vitality and myself expression. What was I going to do? How could I make a living? Would I ever feel rested again? I wondered as I slept 18 hours a day for 4 months…and no doctor could tell me what was wrong.

I created the practices that became the Master Plan out of my need to keep myself sane and moving forward in the face of this fatigue, uncertainty, diminishing capacities. I had no marketable skills other than my voice as all the things I was trained in revolved around communication in the moment. I didn’t know what was happening to me though undoubtably something was…I had no job, no insurance ( my cobra payment was more than my rent in downtown Chicago!) no computer skills, and at 40 my boyfriend and I were falling apart. Peachy. It would be 3 years until I was diagnosed with ALS. I was frightened, pissed off, alone and exhausted. Did I mention I was a good 80 lbs over weight? YEAH. Joy.

The only consistent advice I got from physicians was a perscription for anti-depressants, repeatedly 15 times over…while the path to depression was laid out before me, when I looked inside myself what I saw was UPSET and FRUSTRATION not depression. Though I had become prone to crying jags ( what would later be termed a symptom of Emotional Lability) especially when confronting a physician and my own circumstance, I was shocked at how people wouldn’t listen to me about my experience and were quick to label me as “clearly depressed” when that was not my experience at all! Few people could be with the emotions as they rolled through me, often at inopportune times. I steered clear of the meds.

I became more isolated. My life went from interacting with hundreds of people each week to a hand full. I got quiet. I went inside. having been told everything from “You’re just being lazy” about my speech to “It’s all in your head” about my fatigue…I started with 1 thought: IF IT’S TRUE FOR ME THEN IT IS. And I began to listen for my voice, my instincts and what my intuition had to say about my circumstance. Though I can still appreciate the value of looking at things from new/other points of view, I saw I had surrendered my own point of view to a cause and that combined with a penchant for over-giving altruism created an imbalance. I believe that imbalance~ putting the mission of another above myself and my wellness made me sick. I had been concerned with proving my own worth, I had not been responsible for myself. I needed to reconnect. I needed a plan.

Fortunately I am adept at planning, having managed a department with 300+ volunteers…I knew the pitfalls and the problems from over planning and under acting as well as getting discouraged by the miasma of overwhelm that can effect a thorough plan. Especially in the face of that fatigue, I knew I had to keep it simple, doable and encouraging. I needed nourishment, spiritually, mentally, emotionally and physically. I put opportunities to be nourished in my plan. I made my “job” moving something forward in every domain of my life on a weekly basis. I treated every area of life as a department that needed to produce clear results, then I created a “guiding intent” for each area. I worked on keeping my mind clear and focused, so I could step away from the uncertainty of my circumstances, and think about and work on re-creating my life.

As I began to honor myself 1st, things began to move. I made the committment to manage myself differently with an eye on sustainable productivity versus productivity at any cost. I created a physical environment that supported “flow” and effective action versus PRESS. Oddly enough, I began to experienced being fulfilled in the journey~ even though my situation hadn’t changed health wise, people began to reach out to me for coaching and support. As I trained them in the method I had used on myself, the Master Plan was born and refined. I kept reading, researching and implementing the latest from positive psychology and used reliable texts for support: everything from SunTzu to Wallace Wattles to the lastest neurological research.

I believe the Master Plan is so effective because it’s written from the participants point of view. 1st you clear your mind of errant thoughts, 2nd you are nurtured and empowered, then you are naturally in action on what is important to you, and we implement practices that maintain wellness and improve efficiency and expand capacities over 12 weeks. These practices become ingrained as habits as you are trained in planning. You create relationships and environments at work and at home that set you up to win. The results are as astounding for others as they were for me. It is my legacy and I believe my purpose to alter the way people are managed. Sustainable excellence is possible in fact required to move us forward as human beings. We have seen how over work doesn’t work over time…it’s time to manage for the whole person not just results in the short term.

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Bound by a paradigm

Sunday, September 12th, 2010 by annemarie

So my visit to UIC ALS clinic was decidedly different in tone from my former hospital though I still felt bound by our current medical systems paradigm in the creation of my care. First off I was welcomed and treated like a person versus a number, which was new. Given it was my first visit I still had to meet with everyone under the sun, which was completely exhausting…Note to self: request a 20 minute nap in the room when tired and bring snacks as well as a typed agenda for the DR. However, I did feel that people were respectful of my time AND they had the courtesy to introduce themselves and say who they were and why they were there. Interestingly, as a consequence I had none of the Dr visit hangover I normally experience. While I still needed to recover physically, it wasn’t like I had to reclaim my mind from the grips of a black hole of NO POSSIBILITY. I didnot feel like I had spent the day as a dead woman walking.

There was a minimum of repeat testing done through out the visit~ one of my chief complaints re my visits to Northwestern is that 2-4 doctors ( always one I’d never seen before…) would come in and perform the same basic neurological/reflex exam repeatedly – I felt like I was a guinea pig for any new resident or physician~ whom invariably would waltz in with attitude and without introduction and ask the same old questions that would be repeated again for the physician accountable 20 minutes later. It’s the attitude that makes a difference and the request of my participation versus ASSUMING I’d be fine with being poked and prodded by a newbie and stranger for the benefit of their training.

I’m not your toy. Don’t waste my fucking time. There I said it. Thank you to UIC for having the sense NOT to do this to people!

I still have my reservations regarding my care in general however I believe it’s a function of the limited paradigm our medical system is stuck in rather than a weakness of the people involved. From my perspective, I am studying people who have lived 10-15 years or longer with ALS…and I’m going to do whatever the hell they are doing. I don’t give a shit if there is medical evidence or research yet done to varify the treatment modalities they advocate; their pathway is the only pathway out there…I dont have the time to wait and if it’s not uber invasive why not try it? Given that Western medicine has no treatment from their own system to offer ~then work with me to get me what I need to do so in the safest way possible. I didn’t need the recent study about massages to know they are beneficial…I get them anyway. What I want is a partner to help me coordinate my care…a team of Doctor, Natropath, Massage, healers, Detox masters etc…with someone to work with me to make sure I’m not contradicting myself in the process. You don’t have to agree with me just listen and guide and be of service and let me know if I’m at risk of poisoning myself.

I have this vision of an inclusive facility, an integrative treatment center where all possibilities are honored and coordinated to serve the needs of the patient. Nirvana perhaps but completely doable.

I am clear my physicians are bound by their western paradigm…they cannot honor different requests I have – which seem completely logical to me…HGH for muscle regeneration for example…there’s even a study being done on it, but because it’s not yet tested it isn’t permitted to be tried. TRY ME! Or make an effort to get me to where it can be tried. Which at least the folks at UIC seem willing to do regarding the pacemaker for the diaphram for example. This is an encouraging sign and an opening for a dialogue at least. MORE DIALOGUE PLEASE. My only complaint about my appointment is that I was so exhausted by the time I met with the Physician, I didn’t have the energy for a meaningful dialogue to create my care with her…I would have liked to meet with her 1st and then everyone else. Waiting til next appointment to do so just isn’t acceptable so an email is on it’s way. Look I know I’m a unique patient, and as an executive coach If I ever tried to tell them what to do before listening to what they want…I’d be fired. Appropriately so. I think a consultation and a bit of time listening is a good idea before you do anything…

“You can only make a difference to the extent that you are related.” Werner Erhard

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R.I.P. Cecelia Helen Schlekeway

Wednesday, September 8th, 2010 by annemarie

My last surviving grandparent passed away after a BIG life Monday nite. Celia was near her 99th Birthday in Lake City, South Dakota. She drove until she was 96. She had 12 children ~ 10 of whom survived her: 9 boys and 1 girl. She came from a family of Pioneers, literally…born on November 12, 1911; her family like my grandfather’s were 1st generation Americans having emigrated from Austria/Hungary in the late 1800’s. As they learned English they learned Lakota because that’s what their neighbors spoke. Imagine all she has seen in her lifetime.

She has 24 grand children and they have a big ole passel of kids themselves that I cant get my hands around to count right now. She hated my tatoo’s but loved my attitude. Especially that time I got her neighbor at the lake to clean up their mess they left on our lakefront lot of old house parts, that was ruining her view. Most of her children and grandchildren have gone into teaching and coaching as a career path. So her influence is felt by tens of thousands of students across the country.

Celia knew how to put you to work when you came to visit and kept herself busy with a huge garden and honey bees and playing canasta with the ladies on their beloved Clear Lake. She was the last of her friends to stop driving and had been the one to gather them together to get their hair fixed in town once a week. She followed the Vikings for football and the Twins for baseball religeously and dished out smack to opponents with the best of them!

I hope to be half the woman she was and live just as long.
Thank you for giving us your heart Grandma and for every loaf of zuchini bread and poppy seed bread you ever baked!
I love you.

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WGN imapcts life with MDA telethon….

Monday, September 6th, 2010 by annemarie

I’ve been bawling for an hour…I had not expected to have such a reaction. I was just going to tune in and see how it was going…so after a particularly prolific morning of journaling, I turned it on. With in 5 minutes I was blubbering like a snot volcano! I was overcome with gratitude for all the people nationwide who have given of themselves: from either a dollar at a vendors point of sale to businesses who have donated 10% of sales from particular events. The child performers got me in the gut. I’ll cop to needing a good cry but I must mention ~It took me completely by suprise.

I am connected to the telethon this year, I wrote a note to the emcee’s for their gift bag and I am an ambassador for the telethon and the news clip regarding my speechless speech will be featured on the telethon.

When I was at the end of my rope and had no insurance it was an MDA clinic that covered my medical tests and care before my diagnosis. As scary as the diagnosis of ALS was, the uncertainty of not knowing what was happening was a frightening abyss uncertainty led to fear which led to doubt…it was barely manageable. I will be forever grateful for the reach of the MDA and their committment to ALS research by supporting ALS-TDI the onlt non profit research facility solely devoted to finding a cure for ALS.

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Familial ALS~ it’s only 10% genetic

Wednesday, September 1st, 2010 by annemarie

So many people are astounded when I tell them that only 10% of ALS patients get ALS from their DNA.
ALS is 90% SPONTANEOUS. That means it can happen to you! Which might be the best arguement for taking care of oneself that I’ve ever heard.

I have my own suspicions of what causes ALS but officially we don’t know. What we do know is it manifests differently in different patients
10% Bulbar onset like me where your speech, swallowing and facial control goes first, and the rest get a dragging foot or hand weakness first that progresses inward from the extremities.

Familial ALS is a subset of a subset, and the resources available for people with FALS are scarce. I’ve met families who have lost 8,10, 14 even 20 -30 people in the last 2 generations from ALS. I met one woman at the ALS Advcacy Days who can trace ALS back for 7-8 generations due to symptoms and records. These families don’t “borrow ” the hospital beds for the home and the high tech equipment, they have learned just to put it in storage for the next time someone needs it.

In my family my uncle had ALS and I have ALS. I am fervently praying that this is more coincidence than genetic. Ironically, I grew up thinking I had chosen my parents quite well and in the deep end of the gene pool…My grandparents all lived long lives (3 well into their 90’s) and most of my family is peternaturally strong, athletic and mensa quality folk. So while the Schlekeway family is a bunch of teachers, high performing jocks and all around awesome giving people, we may also be susceptible to the manifestation of what is called ALS. I do not want my family to think for a moment that they are a slave to this possibility~ as I have seen other families become and act like. Quaking in fear of the day the diagnosis hammer will fall on them or their children…to the point they medicate themselves with all the anti anxiety/anti depressants that are so prolific in our culture. This I do not recommend…The testing or the meds-I dont get the value of testing for the gene sod1 or any other gene that might give you a heads up on a disease. LIVE YOUR LIFE. Deal with it if it comes, but don’t invite it in to set up an apartment in your prefrontal cortext until it manifests itself for crying out loud!

You all will do what you’re going to do, but digging a ditch to wallow in is a dangerous thing. I may have had the gene( I don’t actually know) but I’m sure that my lifestyle of extreme working and living had alot to do with tripping it’s trigger. Would I have lived differently had I known I had a gene for something? I doubt it, I’m a stubborn creature. I always think I’m the exception. I have never mastered until recently the art of SELF CARE.

Here’s a few tips:
Don’t work 70-80 hours a week
Don’t stuff your emotions especially after a trauma (like an assault) or any other insult
Do work out and keep in shape
Dont pollute your body with CRAP- eat real food, no smoking, avoid preservatives and mass produced meat and poultry
Dont confuse diet soda/soda with water
Don’t live with mercury filings -get them removed
Be rigorous about caring for head injuries
Don’t work until you are depleted, tend to your adrenal health
Get educated about what’s in our food and environment, and do what you can to cleanse yours.

I could go on but then this would be a rant…you get the picture! Given that ALS is 90% Spontaneous, and on the rise with all the other autoimmune diseases; do yourself a big fat favor~ Take care of you and your body first…with out that you got squat.

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Opportunity in getting knocked down

Wednesday, September 1st, 2010 by annemarie

Look- I’m about as “look on the bright-side” as you can get. I am not for wallowing in self pity or allowing depression to invade my personal space. However, I am an advocate taking the time and making the time to heal/recover from life’s insults and injuries. I have experienced the impact of glossing over those insults and injuries and keepin on keeping on over time…it’s no good. I’m no longer a proponent of getting off it and moving on at any cost, as I believe doing that repeatedly and stuffing the connecting emotions contributed to my current state of dis~ease and in fact stunted my emotional growth as a human being.

I believe there is a wealth of information in these times of retreat and bouncing back…infact we can find the best of ourselves in the journey back from a knock out. The getting back up is the meat of life where the rubber meets the road we have the opportunity to declare who we are, what’s important and adjust our course if called for. I find I appreciate life more in those moments after a loss or a failure…I appreciate what I have now not only what I am striving for life to be. It’s the chance to sift through our values and see what rings true for us still.

Living life quickly is not the same as living life deeply.
Reflection is one of the top 3 things a survey of people over 95 said they wish they had done more of:
1) Reflect More
2) Risk More
3) Build something that lives beyond myself

I used to subscribe to living with the extremes~ pedal to the metal, full out or nothing at all, burnout dont fade away school of life. Clinging to the excitement and pace of the extremes has only kept me immature and stunted my growth…I’m finding a much richer life in the pursuit of balance.I often wobble towards it on a toddlers legs, much like a young singer who can do the soft and the loud voice but misses all the variations in between that mark a master’s performance. But every time I end up on my BUM…I get to declare who I am all over again.

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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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