Posts Tagged ‘Progression of ALS’

Mental Strength

Sunday, July 4th, 2010 by annemarie

I was watching the Wimbelton finals this weekend and reflecting on Mental Stregnth and maintaining an empowering mindset in the face of whatever challenges we face as human beings. Mostly I was watching to get myself inspired, and I also knew if I paid attention I’d have an insight or 2 to share with you all and with my clients. The truth is I needed it. I spent the holiday on my own for 2 reasons: 1- I needed an attitude adjustment and 2- I wanted a large hunk of uninterrupted time to write and rest.

As things get more difficult for me to do, I’ve gotten a bit down on the whole deal. I noticed that I’ve spent a large amount of time being in the present and I haven’t planned for the next phase in my physical support systems. Me, the queen of planning, is crystal clear her plan is insufficient! On one hand I havenot wanted to dwell in the decline of my physical capacities…preferring to live in the mindset of healing and recovery which is all well and good however it doesn’t always mesh with reality. The impact of percieving a few new weaknesses has been a palpable apathy. Over the last 2 weeks there is a notable change in my typing for the worse, same can be said for my balance, the entry way for my peg tube is irritated and sore again and my thumbs are now completely useless. I need to do some more research but I’d be willing to bet there is a cognitive symptom of resistence or lack of willingness to keep up healthy practices. Suddenly it’s as if I have to fight myself to take the supplements I have been advised to take and agreed to ingest as a regimen. This is unlike me. It’s as if resignation snuck up and bit me!

Usually, I can turn myself around on a dime, however I have noticed it takes more to bounce back after a failure or loss if I am depleted in any way. Fatigue is the enemy. I may need to go back to my 2 days in one schedule…up at 7 ish write in the morning, have a call/chat or 2, nap around 11:30-12:30 til 2-3 then have another day of it til about 10 or 11pm. In any case it also takes longer to get back to an empowered mindset after several losses in a short time span and I can see where it could only take 20 minutes to turn my head around at times it takes 2 hours 2 days or a week, depending on my present condition at the time of a percieved failure or loss. The failure itself is never the problem, it just is. How fast I bounce back is always the issue. I have my standard and reliable texts and books as well as restorative rituals and habits…It concerns me that I seem to be developing a tolerance for being at the effect of my condition. It doesnt happen for long but it does happen.

Thus the morning appointments with Wimbelton this weekend which lead to the following insights:
Nadal and Serena won their respective championship matches displaying a mastery that comes from having been there before. It was a huge advantage to have had the experience of playing in championship matches, which neither of their opponents had, which led to some rookie mistakes. Serena and Nadal were also conditioned to play through out a whole tournament. They knew how to manage their bodies and their minds from round 1 to the end. Finding as John Macinroe put it “another gear”. I can totally see where I need to find another gear in this challenge I have with ALS. I got a sense of what that gear could be from stories about another ALS patient Augie Nieto that were relayed to me on Wednesday evening at an event at Fitness Formula on North Ave. Several of the executives from Life Fitness and Fitness Formula who knew Augie were at the event, they each told stories of how quickly Augie was returning emails and how he was typing with his toes! ( I have a flexible touch pad on order to practice with already!)

The main concern for myself is losing the ability to communicate, that would be the end all for me. In fact, I saw a show on suicide tourism on PBS not long ago and I was flabergasted by the ALS patient who ended his life because he could speak perfectly! He obviously had his reasons but DAMN, What the HELL? BLECH. At any rate, Not being able to communicate would suck and that is what I think keeps me working and typing as fast as I can…to get out what is coming through me in such a way that it can make a difference. It’s more than a job it’s a vision really. So I’m off my lethargic apathy trip for now and back to blogging thanks to a few champions,catching up on my rest and well placed shares from giving people. Thanks Ya’ll !
I’ll post my other insights from the Wimbelton notes in my business blog for CheekyChicago.com and repost them here as well.

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From a Yes to a definite Maybe…

Wednesday, June 30th, 2010 by annemarie

So I used to be a YES to life…all the time! consistently for years…now I pace myself, and things get dropped out. I fail to keep all my promises even in light of scaling back on promises… so with certain communications I run a week to a month late. Please dont take it personally. It’s not personal.

It’s not YOU it’s ME!

Things take longer. What was a 5 minute shower is now 10-15 mins. and I need to rest for 5 minutes after the effort. Getting dressed can now take up to half an hour. Look I know I present a pretty picture, all empowered and involved inspite of ALS. And this is true I am, but I am also clearly focused on certain activities:

1- building a business that will provide for my family and healing my body
2- raising awareness and funds for research
3- expressing myself through writing as much as possible as quickly as possible because i am struggling to type now
4- creating strategic partnerships that will fulfill my vision
5- enjoying good food and drink while I still can
6- staying connected with people

So if I dont email you back or message you back right away it’s not YOU it’s me! I am either resting…recovering from some event or days of working…trying to get it up to be social…or trying to capture what is coming to me and through me that I believe will make a difference.

Here is my request- bug me- email me again. I have so much happening in my brain right now and so many projects I am managing that I need reminders. Chances are that I saw your email while in the midst of something else and couldn’t get to it right away…I may even have forgotten about the email. This doesn’t mean I don’t love you or have forgotten about you. What friendship looks like with me now is you have to generate it more often than not. I know this is a shift, a change and some of you are taking it personally, that I am not as responsive or as receptive to going out or constantly inviting people to do things etc etc. I was out~ now I’m in with the rare exception. I save my energy for events, I manage my rest so I can be sourceful for my clients and I am not operating with the same level of wellness you are despite my best efforts.

Right now I am managing myself to have 2-3 appointments/ meetings/events a day and only doing that 4 days a week. From that small effort I need 3 days a week to recover. On my 3 days off I normally sleep most of the 1st day…I allow myself to rest until I feel restored as much as I can. After a long week such as the gleeful one I just had with my family I will need 2-3 weeks to get back to feeling replenished. I get replenished by getting more rest through out the week and taking 3 sacred days off.

I am extremely productive AND it takes something… thank you for your partnership. It is required for us to move forward.

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Musings on Mindfullness, ALS as a Meditation

Sunday, February 28th, 2010 by annemarie

ALS as a meditation: for sure it forces me to eat consciously, walk consciously, and drink my tea, coffee and especially water consciously. All the activities that were automatic, and done with out thinking; now thrust me into the present moment due to their difficulty. I breathe with awareness as well as it takes something for me to breathe deeply and consistently.

Before ALS, I was a voracious intense consumer. Of everything. Water, wine, sex, work, conversations, words…if I wanted it I wanted alot of it. NOW. My appetites were varied and slow to be satisfied. I would often push the boundries of my experience to get “enough” to feel full. Currently, I have the experience of being satisfied with very little, limited in amounts and variation of all of the above, perhaps with the exception of work.

All that I knew myself to be, is leaving me. As my capacities contract, my IDENTITY morphs. In so far as my identity is related to my talents, proclivities, and preferences, who I have trained myself to be is being stripped away, layer by layer, skill by skill, silenced by the desintegration of muscle and nerve. I am the semollier who cannot taste without flinching as sour tastebuds have intensified. The dancer who has no balance, the power lifter who cannot rise from a squat. The creative cook who can no longer prep on her own, I can’t even cut my own meat on my plate anymore. Most importantly to me, I am the voice who can no longer sing, seduce, or command attention from the front of the room. I can’t tell a joke, or instigate laughter with my funny accents and quick wit- the wit is quicker than the tongue and much is lost in translation. Most often I don’t even try anymore.

So, many of the things that made me “me” are falling away…what I could count on myself for as my identity is shifting. I feel like an abstract of my former self, a minimalist rendering of the woman who went before. It occured to me that I’m half way there, half way to the distilled version of myself who’s sole capacity is to think. All the other functions of life will have to be done for me but I’ll still be here~ brain kicking in hyperdrive, romping through trains of thought without distraction. Thankfully, I have trained myself to think and inquire,so on one hand it sounds kind of peaceful, only being capable of awareness, mindfullness. A thinking woman’s life of comtemplation enshrined and encapsulated in a barely functioning body, an odd sort of luxury.

Of course there is to distinguish thinking from mindfullness. Mindfullness as a way of life I can get into. Thinking is my favorite past time, what else is a high powered brain to do? It looks like I’ll have time enough for both, and as long as it seems relevant I’ll keep communicating what I’m thinking. And let’s have it make a difference.

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On being 2 headed about it…Grounded in reality/ Present to Healing possibilities

Wednesday, February 17th, 2010 by annemarie

I have been meaning to write about this for a long time – in fact I’m quite over due with a promise to an author in London regarding the difficulty of managing one’s mind to maintain an empowering context especially while at the doctor’s office. See in theory it shouldn’t matter: I should be able to be as powerful in that enviroment as I am in my business and my life…yeah, that’d be theory. It’s hard to language the experience of being in an enviroment that holds you as a dying thing, when you yourself know how much life you’ve got left to give and live.

Recently I was indulging in one of my guilty pleasures, novels of the supernatural/romance/warrior kind, books with strong women characters who are treated as precious by their brilliant warrior men and somehow seem to overcome all the misunderstandings of life to get together in the end. My current author of the month is J.R. Ward, the author of the Black Dagger Brotherhood series, in “Lover Eternal” she writes:

“And she remembered what it felt like to cease being a person. After the doctors started treating her with chemo, she’d quickly sunk into the fragile underclass of the sick, the dying, becoming nothing more than a pitiful, scary reminder of other people’s mortality, a poster child for the terminal nature of life.”

This short paragraph completely recreated the experience of being in the Dr’s office before my diagnosis and after. Only after I was diagnosed with ALS, the looks got more pitiful as in FULL OF PITY…yech! disgusting. and the inability of the staff to deal with emotion became more glaring. As if in unison they had to turn off their humanity, and dislocate themselves inorder to get through their day. I don’t blame them personally – I blame the management for not giving them the tools to deal with PEOPLE who happen to be dying. I became a member of that underclass of the sick, and I ceased to be a person.
The staff will no doubt deny this ~ however that is my experience. It’s so shocking for me, even in the beginning, when I can remember people not answering my questions and several male doctors- 8 of them- strongly recommending anti-depressants as I would cry frequently in appointments. I tried telling them I was UPSET not DEPRESSED, and they were having none of it. It disgusted me that they would have me supress my emotion just to make me easier to deal with~ bastards. ANYONE having the symptoms I was having and getting NO ANSWERS from constant testing, would be pissed and UPSET. STOP TRYING TO DRUG US INTO SUBMISSION.

When I was finally diagnosed and found out that Emotional Lability was actually a symptom, I was so relieved to have an answer for my bouts of crying, at times uncontrollably. The truth is I almost never cried about it until I was at the Doctor’s office and had to sit there, dealing with the uncertainty of my health. The rest of my life was fairly empowering and fruitful and fulfilling, despite my symptoms. What upset me the most was the abscence of a conversation for healing I found in the care of my physicians. It was all about managing my decline: each and every conversation became about what’s next in the dance of deterioration, versus here’s what you can do to retain your energy ,optimize your health ect…here’s what we recommend…THAT type of conversation was no where to be found in the hospital/testing/ traditional medicine enviroment.

The conversation for Optimizing my energy and health came from alternative therapies and their practitioners. In this realm there was a conversation for LIFE, and for maximizing the QUALITY OF LIFE no matter what. Everything was about what can we do to serve you and give you the most energy to heal with…I embraced more raw food, added other therapies besides massage and Chiropractic care and NET. I paid more attention to what I put on and in my body. I work with a spiritual coach to keep my focus on health and healing and do many meditations and visualizations to support a healing mindset. I even feel better and lighter and more WELL as I write this incomparison to a few moments ago when I wrote about my experience at the hospital/ doctors visits.

So I strive to be balanced and purposefully 2 headed about ALS and it’s impact on my life. I need the information of what’s coming – even if I hate the delivery system and enviroment the information is delivered in. I am not out to kill off the messenger however I assert there is another way for health professionals to interact with their charges – regardless of the condition they are facing- I have a message for those in charge: TRAIN YOUR PEOPLE TO PUT THE PATIENT FIRST. If we were treated as human beings 1st, half of the complaints would go away. Deal powerfully with the whole of us, not just the symptom in us. Honor us as you would want to be honored.

On one hand I gather the traditional medical information I need to care for myself, careful not to indugle in the despair, nor tolerate the gloom! On the other hand I embrace all the intentional healing energy I can from various sources, engaging in practices that protect and elevate my attitude to one of living fully. I do what I tell my Executive coaching clients to do~I consistently clear out my space, mentally, spiritually, physically and emotionally to allow the most room possible for the opportunity to heal and for business results. I use the framework of the Master Plan program I created to support and manage my empowering practices; creating a powerful vivid and ENLIVENING FUTURE for me to fulfill. In this way I can be 2 headed about my condition. Firmly grounded in reality AND Fully Empowered in my QUEST for healing.

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Telling the truth…

Monday, February 8th, 2010 by annemarie

I did not realize how much time and energy I spent on hiding the impact of ALS on me, from others in my life, until my last post. I have realized in the last few days just how often I will supress my communication so I do not worry others, or I will manage myself to look good for events/ meetings/ occassions and then come home and crash…I have let go of some of that urge to keep it on the down low this past week. It’s time to start telling the truth and letting people in on what’s actually happening.

I need more rest now. That’s just how it is, and I’m struggling to be with that’s just how it is…which is odd for me. Usually I am more than eager to grasp what’s so about any given situation, because I know if I can get down to what’s accurate I will always have power around a situation. I guess it started when the emotions were beginning to interfere with me being with my clients. You see as long as the spotlight isn’t on me, I’m good. No worries. I’m present and focused and right in the conversation. However, the moment I am asked about myself, I get teary eyed and sad and my jaw is paralyzed into a 2 yr old’s pout complete with protruding lower lip!
I feel like a Dr. Jekyl, Mr. Hyde situation….powerfully coaching and making a difference one moment/ an inconsolable crying emotional wave rider the next. So I’ve kept the focus on others during my days as much as possible, however as my energy has flagged I see the need to be more forth coming about slowing down my pace.

I’ve created a disconnect for people I think, because the person they see isn’t what they hear when I speak … and the person they interact with isn’t the person who needs 2 naps a day and 2-3 days of rest on the weekends. Or maybe it is…and I just need to communicate what I need and tell the truth. I now see that I’ve been distancing myself by not communicating what’s accurate about my condition and what I now need and will soon need to keep moving, being productive and living powerfully with ALS. I don’t feel like I’ve been in denial, more like I’ve been acting or hiding what’s really going on. And that’s just ridiculous! I started this blog so I could have a venue for expressing what was really happening, so it’s time to tell the truth and ask for what I need!

Only – I suck at asking for what I need – this event has taught me that! My identity is still wrapped up in the “strong like Bull” vision of myself even though I’m half way into a wheel chair…and back to sleeping 12+ hours on my time off, which is 3 days a week. If I don’t completely shut down for 2-3 days a week I’m useless the other 4. UGH. I intend to emulate the woman who I helped across the street last week…primal scream therapy is for me!

Here’s a few things I need that you may be able to assist me with:
You may not know someone, but you may know someone who know’s someone….ya know?? At any rate…

I need a PR person to assist me with my business, next years fundraising campaign ( which I intend to take national ) and getting my story out.

I need sales people to market and sell my executive coaching programs in the Chicago, Denver and Los Angeles areas. I have program leaders being trained, but what makes a good program leaders may or may not make a good sales person!

I need a good internet marketing person who can produce results…I know my program is effective – amazingly so…and I realize in this market it’s 10% quality of content and 90% marketing… this person needs to be able to convey the authentic value of the Master Plan and actually give a poo about altering the way people are managed…and how they manage themselves.

I need a biography writing partner…I have enough books in the works – I need assistance on this one.

I need 400 smiling happy faces at my fundraiser Weds eve…2-10-2010…500 N Lasalle…7-11pm…

then I need a vacation!

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I’m a spectator internally and externally to the progression…

Sunday, January 10th, 2010 by annemarie

It all feels so strange. When I am alone and I’m quiet I almost forget I have ALS. I’m not talking so I’m not reminded, at least that’s how it was until this last month. This Christmas it became difficult to stand up from a squat or get up from a chair. My left leg is fading fast….the majority of the twitching muscle activity had been in the left leg for the past 6 months. my doctor says not everyone feels the twitching 1st, but I sure do…it’s my harbringer of decay.

Last May when I did a rigorous raw food cleanse the twitching stopped for 2.5 whole months….it just went away, then returned when I added caffiene and more cooked foods into my diet again. It returned with a vengence. So next Monday I will begin a raw food regime again and see if it has the same impact. Cutting out caffiene is going to suck but so what!?! If I can delay the twitching perhaps I will extended my time and preserve my stregnth.

I believe I may have taken my last independent trip. Fairwell privacy, fairwell. Things have gotten so damn awkward! I can’t open water bottles and once opened I invariably spill or drop them. In fact the dropsies have become a daily occurance, it used to be occasional however now it’s consistent: I’m always dropping something. I know I should be gratefull that I’m still walking around but for someone who used to spin around in pointe shoes this is a pain in my AAA. For those PALS who were athletes with a high level of kinesthetic awareness, this process is a damn nightmare! As if all your cellular memory was robbed from you one night or better yet blocked- you still have the memory of how to execute a move, step or motion flawlessly but the message is picked up and spirited away before it can hit the muscle that’s just aching to perform. ANNOYING.

My meat is hanging off the bone. It’s as if the connective tissue that binds the muscle to the tendons and bones is missing and the only thing holding that muscle near the bone is the skin. The same with the skin that now hangs from the muscle as though it’s no longer interested in being associated with it. At almost any angle I can feel bone 1st not muscle -I am not skinny and I have alot of muscle. I was strong like bull! I actually think all the weight training I did in college and gradschool is the only reason I have been walking this long. I used to have traps like a man…now my neck muscles are so weak I can’t read laying on my stomach for more than 2-3 minutes at a time. I am constantly concerned about herky jerky cab drivers and possibly injuring my neck in the cab so I push my spine back into the seat to support myself.

I had intended to write for most of the day today, however I rested instead. The tremors had returned to my face while I was in California, nasty little bastards that they are. They were gone for 2 years but now they’re BACK. On my face mind you! My once so pretty face…my mouth is now pulled into a perpetual frown by the twitches on the right side of my smile like a fish hook pulling my lips down toward my jawbone. Then there is the one that feels like a piercing through my left eyebrow creating a V in the browline from time to time. But my favorite has to be the slight mobile tingle from the inside of my left eye socket running over the bridge of my nose and trailing off in my right cheek. Lovely. So I rested today, hoping that it was fatigue from traveling that spurred the facial twinges. So far it eems to be working…I’ll keep you posted.

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