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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September 6th, 2010 by annemarie
As I begin to use this appendage that Dr’s were so keen to get me into 6 months ago, it’s becoming crystal clear that they paid absolutely no attention to what I wanted to use it for and have never had to use one themselves. After all the pain, interruption and infection it took to get this piece of peg into me the damn thing is unweildy and borderline useless. It was to support my nutrition…but it is too small to carry even my vitamins ground to powder and mixed with 5 parts water with out clogging up and making a big fat mess much less handle the vitamin and fiber rich shakes I make for myself.
I use an old fashioned ratting comb( a dupont Black Diamond number 40 comb) with a 5 in metal pick on the end to punch through the clogs allowing the mixture to spit up on whatever I have wrapped around me at the time, so I can continue to inject the vitamins/water mix into the tube through a 60 ml syringe tilted at an angle to avoid the clogging of the supplement sediment. This is the half hour process I go through to take my vitamins and supplements as I can no longer swallow them and many do not come in liquid form. It is such an exhausting process that even though I’m supposed to take the supplements 3-4 times a day I end up doing it once before I get dressed. My favorite part is how the cap on the tube regularly comes undone so that it drains the content of my stomach down the right side of what I am wearing~ it’s disgusting and apparently my bile smells like mangos. BLECH.
The whole thing is absolutely unmanageable and vexing. I’m so dissappointed and feel misled and unheard all over again, as I remember repeatedly asking about the uses of the tube and how it could work for me. I’m clear I need a larger tube and hopefully a shorter tube~ the one I have hangs 12 inches out from my stomach. What shocks and amazes me is the lack of customer service demonstrated by my former hospital, there was no interest over there in my experience as the end user of the peg tube…there was alot of pushing me to get the procedure done asap…before I was ready. However there was no asking me questions to make sure I was getting the right tube for my needs, infact they didn’t ask any questions at all while they didnt listen to what I did say my needs were.
The distinctions called CUSTOMER SERVICE and PATIENT CARE were wholely missing from my procedure at Northwestern from the procedure~ which I’ve relayed in this blog…to the lack of listening to my requests and needs as their patient. It was simply not a concern for them. I call bullshit Northwestern! Your public relations campaigns are lying about your focus. I am not alone in this conclusion. 6 months later after having healed from the infection and the harrowing experience around my procedure I am again left feeling bilked and taken for a ride by those who promised to care for me. I am not someone who is interested in being wounded…It’s annoying to me! I have enough to do with out being reminded by an open wound in my stomach that isnt working for me…it’s time it began serving me for crying out loud. Let’s hope my new team at UIC’s MDA clinic can provide some answers and keenly listening ears… that would be a nice change. Perhaps they can make some sense of it, I’d be happy with a bit more workability.
Tags: Customer service, Northwestern Memorial Hospital, Patient care, Peg tube, supplements, UIC, workability
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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.
Tags: ALS-TDI, Jerry Lewis telethon, MDA clinics
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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.
Tags: Altruism, attention, Balance, Virginia Essence
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September 4th, 2010 by annemarie
Swearing has always struck me as funny. Even though I dont /cant do it myself anymore there are times when the nicest thing I can think of to say is ” Go flap yourself.” Today while meeting with my girlfirend Becky via Skype, which works really well since I can type while she talks…she let loose a torrent of innovative and imaginative profanity just like the old days when we were hot young wild and free! I laughed for a straight 5 minutes. Silent laughter over skype is hysterical.
So we came up with a service for ALS patients with Bulbar onset: for the low low price of $19.95 /month we’ll tape Becky laying down the profane law with whatever legths of profanity you prefer…so you can replay it at will…whenever you get the urge to swear. Surrogate swearing. Get the expression with none of the blame!
*&%$@!%*& Feeding Tube!
I can hear you M^$#!@$^*’s I just cant talk!
I need some more God *&%#@#% REST!
We even created a safe word that when I type it she unleashes the torrent.
Try it at home with your trusted friends. Belly laughs are healing.
Tags: humor, Laughter, Skype, swearing
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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
Posted in ALS Progression, ALS Thoughts | No Comments »
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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