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.
Tags: 90% Spontaneous, FALS, Genetic, self care, SOD1
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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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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”.
Tags: ALS Experience, Caroline Myss, diet, exercise, Healing mindset, homeopathy, identity
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August 22nd, 2010 by annemarie
Ladies you will all get this! Most guys too I think…You know that magic number? The one on the scale? The place where your image of your body meets the measure of the scale and you are VALIDATED by it’s number and the reflection in the mirror??? Yeah well…BLECH, Baloney and BS to that! I am now 5 lbs less than my perfect adult weight and that just isn’t the experience.
I do of course realize that this is also a function of my “magic #” having been formed at a peak level of health and strength for my body around the age of 24 and at the height of my strength training prowress. The last time I was 155 I had 10% body fat and was ripped. Thus 20 years later after being over weight as much as 90 lbs and after contracting an illness which has limited my movement for 4 years already, that Magic # in my head is so far removed from reality as to be ridiculous. I really had to deal with myself this week about how much effort and energy had been put into “If only I weighed 155…” everything would turn out and be a goddamn rosegarden…I didn’t think I was a sucker for that line of thought but I was! All my fantasy wardrobe,that I could now afford, would fit effortlessly and my life was suppose to read like a smart sexy romance novel on crack…yeah, not so much.
If I had taken 1/10th of the energy I poured into that line of thinking, starting weight loss journals each New Year and 2 m’s before my Birthday, just 1/10th the energy…and put that into a single purpose, any purpose, as simple as what actions to take right now, or what would move me forward in the moment right now? I’d have been a more fulfilled human being.
Since I read “Tuesday’s with Morrie”, I’ve been looking at this idea of learning how to live by learning how to die. This conversation about weight is just one reason I don’t envy the young, I envy the old…their wisdom, their vision, their perspective, their years…that’s what I envy…longevity. Not the Magic number on the scale, but moments measured in smiles and tears and accomplishment.
Tags: Body weight, envy, Fantasy, measurement, tuesdays with Morrie
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August 22nd, 2010 by annemarie
Three weeks ago I went to a healer and Natropath(SP?) of some note in the Detroit area. She’s about 82 and nearly a saint as far as I can tell. She believes in healing through food, which is a welcome perspective as I’ve asked repeatedly for dietary advice from the medical community and found no solid ground to walk on there. She took a urine sample and a saliva sample and hooked me up to a biofeedback machine for a few hours and we set me up on pure organic supplements that are designed to correct any deficiencies she distinguished. A week later I went on vacation so I am feeling stronger and exercising more but I wonder if it’s just the vacation talking…at any rate I have corrected 2 glaring things she pointed out.
1) I’m anemic
2) My sugars were really high as I’d gotten sloppy with my diet.
About May it got much more difficult to chew and swallow solid foods so I went to more soft foods. Coincidentally, it became dangerous for me to cook for myself as I cannot lift the pans anymore and I was concerned with maintaining weight so I MADE UP that the calories were inconsequential, which of course they never are…this lead to all sorts of dietary mischief: Ice cream for dinner, a conventient Smart Ones Lasagna for lunch etc. 2 months later I had to pee all the time and my sugar numbers were borderline diabetic! JEEZ O PEEZ! STOP CHANGE START.
SO now while it’s a struggle to get enough water, I believe we’ve interrupted the sugar blues, through avoiding simple carbs and eating more protien through eggs and fish and upped the fiber with raw fruits. I feel stronger from the supplements for iron, and strangely supported by the rigors of the regimine I’m on. It forces me to stop and nourish myself (albiet in a sloppy way-through my peg tube) four times a day which I’ve combined with a micro meditation for healing my cells. I feel I’m getting the nutritional balance restored and while on vacation I’ve enrolled my family in fixing high protien high fiber versions of soft foods for me to eat. Barilla Pasta ( 9g’s of protien and 6-7g’s of fiber) and some beans and rice recipies get me grooving now.
I also see a vita mix in my future…
Tags: anemic, correction, Sloppy Diet, soft foods, supplementation
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August 19th, 2010 by annemarie
So I’m in So CA convalescing. You know how all those novels have people recovering from illness or injury go to a seaside resort/home to convalesse? (sp?) well, I’m doing that. Terranea is a fantastic new resort in Rancho Palos Verdes. Here I am up with the sun and in bed by 9pm. I’m in the midst of 10 days of tan, spa, water workouts in saltwater pools and healthy dining. Well and maybe a 10 cane mojito thrown in for good measure every other day.
I am indulging in that which is healthy as I have a new rigorous supplement regimine homeopathic in nature from my recent Detroit trip. It feels good to be DOING something. My parents are with me as we celebrate my 44th birthday and their 47th wedding anniversary. We are here to plan my care and their respite during my care…as I am unwilling to have their health impacted by mine. We are reading “Share the Care” by Cappy Capossela and Sheila Warnock and plotting our course for the next year depending on my needs.
Meanwhile I am reading of Paracelsus, the old time father of the new age medicine, essays on the spiritual nature of DNA/RNA, “Loving What Is” by Byron Katie, Books about Swedenborg~ 1- biography and “The Buddha of the North” by DT Suzuki and Caroline Myss’ latest effort “Defying Gravity: Healing Beyond the Bounds of Reason”. Bring it on Miss Myss! Bring that noise right ON!
I have had many new ideas here, as I count the porpoise schools feeding just off the coast and I watch the otters bob about slapping their paws together to release their lunch from it’s shell. I am envisioning a treatment center that includes all disciplines, a sort of interfaith model of medicine and method of looking at disease. I mean if we don’t have a cure in modern medicine…what’s the harm? It sure beats waiting around for the umpteenth phase 2 trial. More on this later…time to count the dolphins!
Tags: Carolyn Myss, respite, Rest, Share the Care, Swedenborg, Terranea
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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”.
Tags: Mitch Albom, Morrie Schwartz, shared experience, tuesdays with Morrie
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August 7th, 2010 by annemarie
Yesterday, I got something unbelievably simple! I have been lying about working out. I have been telling people I can’t workout. This is not accurate. I can’t work out like I used to is accurate. I can’t work out is false. If I try to work out like I used to I will have charely horse like cramps with in the muscle in short order. But if I do other more limited things I can move!
I’m unsure why this was hidden from my view. My paradigm for “working out” didnot shift along with my abilities. No where in my past would I have called leg lifts while sitting on the couch working out…but I CAN DO THAT! I can also do stretches and knee bends (demi-plies) and even some walking up to about 6 blocks. I can even dance around and wiggle a bit if I have bar or a piece of furniture for support. I had been negating all that activity and movement just because it didn’t look like what working out looked like when i was well…
Hmmmm…where else am I doing this? In what areas of life am I applying an inappropriate standard from the past on my current level of ability? AND making it BAD and WRONG. Food for thought, yes?
Tags: Limiting view, Lying to oneself, paradigm shift
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August 3rd, 2010 by annemarie
I don’t know what it is about my Chiropractor…but every time I go I have a whole new freedom to move. I see an upper cervical Chiropractor, Dr Dan Fedelli at the Balancing Center near my home. Today on the way there I was walking like a young giraffe ~ plopping my left foot out there and following theough with my stronger right leg…however after my adjustment today as I walked out I was moving close to normal person walk! PURE GLEE!
You may recall if you’ve been reading that I had let my wellness practices lapse and I hadn’t seen Dr. Dan in 6-8 weeks up til 3 weeks ago. So I went in twice 1 week and then the 3 weeks since only 1 time, and presto a whole new gait. Come ON! If you have any idea how rare forward progress is with ALS you’ll capture how I’m feeling. Often after I see him I feel the need for a nap to let the treatment set in, but today I am enlivened by the progress. I also made a cool discovery~ he has some samples of essential oils on the counter where you check out, and I grabbed one at random for respiratory support and put some on…wouldn’t you know I am breathing deeper and dont feel so deprived.
This weekend I head to Detroit to see a holistic healer who will check me for food allergies and guide me through a heavy metal cleanse ( hopefully!) as I have been reading “Eric is Winning” and noticed his survey of long time ALS survivors all had very few almalgam fillings or they had them removed…I have quite a few of them and until I can create a plan to get them removed, I want to take some action! There are several voices out there people who were diagnosed with ALS and have beat the odds and the time constraints and are living longer through eliminating toxins in their environment, their food, their bodies and eat a fairly clean diet ( lots of raw food but not all) Eric Edney of “Eric is Winning ” Fame and Dr Craig Oster from www.healingwithdrcraig.com are just a few. Why our traditional medical resources donot acknowledge these possibilities and include a proactive diet plan and cleansing program? I get that it’s not completely researched so STUDY IT! We already HAVE NO CURE…it can’t hurt and it gives us something to do in the meantime!
People also ignore the abundant research on mind body medicine, eloquently detailed in “When the Body says No: The Cost of Hidden Stress,by Dr . Garbor Mate. Our biology is intimately connected to our relationships and emotional health and wellness. Not taking care of ourselves is a running theme in people with ALS. Having a duty to our image or our promises which overwhelms our own self preservation. Protecting others from the impact of our own pain.
Continueing to perform and play ball through injury and sickness. All of which further errodes the immune system until you have a major breakdown.
I can see patterns of this in my own life. I wish my doctors have suggested that I explore what patterns I have had that donot serve me through out my life…at least it would have begun an interesting inquiry and a pathway to insight. We can no longer ignore the impact of life stresses on disease. It is imperative to explore the body-mind connection and harvest all the knowledge we can from there.
Tags: Dr Craig Oster, Dr. Dan Fedelli, Dr. Gabor Mate, Eric Edney, Eric is Winning, Mind Body connection, prevention, The Balancing Center
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August 1st, 2010 by annemarie
I sleep on my side to facilitate breathing. I lie on my hip and the bone digs into the flesh beneath it, causing the bottom leg to go all tingley. In the morning the side I’ve slept on most will feel like I’ve run 5 miles becoming stiff and sore. Calf muscles cramp and over a short time shrink noticably ~ I’ve lost 2 inches on my left calf this year. My once shapely and enviable calves have an odd angled sloping appearance.
Where I used to have muscle I have tendons and thin whimpy muscles. Though I weigh less than I have in almost 20 years I have a pouchy belly. The last time I was at this weight I was ripped! Now I feel like I’m skin, bones veins and nerves with the remnants of my muscles hanging on for dear life. There’s not enough muscle to protect the nerves from being compressed by my body weight as I lay or sit down causing hips and arms to fall asleep…even though I angle the pillows and stack them up to elevate my upper body for better breathing. I want a pace maker to stimulate my diaphram…I wonder what the wait is to have that experimental procedure or who I need to know?
My hands are the most noticible new weakness: opening doors is a chore and elevator buttons take a knuckle or palm not a finger now. Typing is tricky. opening mail is impossible and turning pages of my beloved books is an adventure. I just started dropping books repeatedly when I read as my hands can’t hold them steady even against a pillow. I am in a race to write …get it down get it down…I know there are new ways to type with toes and I practice hoping my legs will outlast my arms. Noticing this can can spin me into overwhelm and I have to ratchet up my little miss empowered mojo to keep from going back to bed and staying there.
Soon I’ll need all my meals prepared by someone else, and fed to me as well. Last week I was in a restaurant and the soup spoon was too heavy for me to use through the whole bowl, it exhausted my hand! Time for packing plastc portable utensils. My walk has become a kind of march, where I depend on my stronger right leg as I slap the left one down for a step forward, Left Left Left -right Left! Like a baby giraffe…at 5′3” there should be nothing giraffe like about me. I have been unsteady on my feet in general, using the walls and tables in my apartment for support. Getting up from the couch is now an occassion for concentrated effort. My indepenent days are coming to an end.
The % of energy it takes just to navigate through a day is growing to the point where I must judiciously parcel out my time and I often cannot make social engagements at the day’s end. Now when I have really good ideas I look to see who I can give them too lest they be lost all together. All my trips must have more than 1 purpose whether it’s travel or a trip to the office 5 blocks away, or it’s just not worth going out. So this week I go to Detroit to plan a fundraiser, train a program leader for the Master Plan and see an alternative Doctor…Last year at this time I felt great. I had just done a rawfood cleanse in May and HAD STOPPED THE PROGRESSION OF MY ILLNESS. All the muscle twitching was gone, I am wondering if I can turn this damn thing around again…
I gave up coffee this week so I can go to the 90% raw food again with no headaches from caffiene withdrawal. I think it’s time to find out!
Tags: Being with what is, progression of muscle weakness, status report
Posted in ALS Progression | No Comments »
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