IntrinsicTina

Beginning of August found me at the local hospital with a urinary tract infection and  dehydration.  When they say PALS must be vigilant against infection, boy are they not kidding! I alternated between fever and chills.  What began as gagging quickly turned to retching and the weakness in my limbs was profound.  And still I hesitated to call paramedics or even go to the emergency room until next morning when I had no choice.     Why would I doubt my symptoms? Why would I take such chances with my health?  Temporary insanity!  My husband/caregiver and I engaged in open emotional warfare for well over a month and half.  At the end of July I felt it absolutely necessary report him for abuse and he felt it absolutely necessary to leave me. Bad place to be if you're absolutely dependent on your spouse as a caregiver

Driving through Bowdoin National Wildlife Refuge, we commence to identify some local birds.  The display pond yields one small duck. Approximately .2-miles down the road, we hear a persistent quack.  My husband instinctively looks around the watery landscape searching for the source.  I get a big giggle, then pull out my iPad to shut off my new medication alarm...one duck quacking.

On the road again… We left our home at 2 o'clock in the morning on August 30. We are Ohio and Virginia bound to see my father and stepmother as well as my 88-year old uncle.  We plan on making many stops along the way...Glacier Natl Park, Mt. Rushmore, among others.   What's unique about this trip is that it is being made on a shoestring budget, in a 2001 Dodge Grand Caravan VMI (wheelchair conversion) van hauling a woman with ALS, namely...me.  We are loaded up with all the requisite paraphernalia including power wheelchair, manual wheelchair, bedside commode, multiple pillows, my Deanna Protocol meds, prescription meds, clothes, and other crapola. A couple of rest area naps and a bank stop in Spokane.  Reluctantly we bypass "Pig Out in the Park" to stay on course for Missoula where Tom Beaudette is "keeping the light on for us".  A handicap-accessible room awaits and we actually have a confirmed reservation.  Not our norm.  A shower will be great...as the

Back together after abandonment.  Everything has changed.  Love is finite.  It has an expiration date.  Ours appears to be rancid. While we are physically together, i am alone, lonely, and in agony.  When I speak of love, he hurls the accusation of manipulation.  A well-tred trek from home to vacation home (2-hours in the wheelchair van) through the beautiful Mt. Rainier National Park yields melancholîa and strife between us.  He steadfastly clings to the notion that my world is so small, I may as well live in the confined space of a nursing home.  I feel betrayed as I try to explain the concept of loving and being cared for and watched over and protected as the culmination of a life well-loved. Who says my world is small?  It remains as small as he is willing to box me in.  I am busy everyday...water aerobics 3X/week, sober meetings 3X/week, doctor, dental, and massage appointments, getting my hair done, nails done, and dammit, I need waxing.  I'm thinking Brazilian...just

Could July be the worst month of my life?  It has been filled with volatility and overt anger.  The worst day I thought was mid-month at 3 am when a full body muscle spasm racked my body.  My screams and pleas were met with inaction, derision, and violence. A few days later I posed innocuous questions to my ALS doctor and walked away with a psychology referral.  Four days after that I posed more questions to my primary care physician who curbed the detail and offered another psychology referral.  Another seven days and no appointment set, emotions hit fever pitch, another job disintegrates, and it is okay to leave me with a complete stranger...NOT!  When it appears that he is turning the tables and calling the police on me...Hell no!...I call them on him.  Instead my parents and sister show up...shortly, the unsuspecting caregiver shows up...I yell at her to leave.  He could only offer that the caregiver is female.  Nothing more.   The police arrive and I finally report him for

Every three months I see my ALS doc and today was the day.  My FRS is 17 and my FVC is 90%.  These values are down from 28 and 98% respectively.  Not great but not devastating either.  The main driver of the decreases are my loss of mobility as I am now wheelchair-bound.  I have had ALS for a year and a half and my decline is fairly swift...I wanted the slow variety but let's face it, I'm an overachiever. The good news is that my loaned Permobil C300 (power wheelchair) got the Physical Therapist seal of approval and is a good fit for my body.  We got a recommendation for a better cushion, a Rojo, as well as a vendor for an iPhone/iPad support.  This is exciting as I currently cannot dial 9-1-1 to literally save my life!  This should help. I was a social butterfly at the hospital today, meeting Linda White and her daughter, Kirstin, as well as becoming reacquainted with Vic and Jan from my ALS support group.  Additionally, I met a sweet, large black man with a spinal cord injury

I know everyone wants to feel good about themselves and sleep the slèep of the righteous.  They want to be secure in the notion that they are good judges of character.  People generally see what they want to see. However, too many of us know the truth of hat goes on behind closed doors.  From all public appearance my husband may look like an unselfish, long-suffering caregiver but I'm here to break my silence and tell the truth.  I am being abused.  Verbally and emotionally mostly with just a smattering of physical to keep me in line.   He has bullied me and dumped on me for years.  He has forbade me to participate in activities which have given me joy and built my self esteem.  He has kept me isolated from those who could help.  Nowadays, it's easier for him than ever.  People applaud his loyalty that he stays with his terminally-ill wife, selflessly attending to her every need.  Seriously?! He is angry, resentful, and cruel.  In front of others, he is loving and attentive.  F

I am sitting in the sun with my cat sprawled at my feet out on the front porch.  Hummingbird just buzzed us and fireworks boom all around us.  Between charges, the chickadees cheep in the poplar over my head while other songbirds sound all around.  Today is Independence Day in the United States of America.  While my husband and I are born and bred Americans who have always lived within the bounds of our great nation, my household is opting out of the festivities and celebrations today. Perhaps with my decreased independence and increased dependence, I'm not in the mood to celebrate. My household is affected by ALS. We feel like many of our choices, hopes, and dreams have been wrested away from us.  Instead of being a day of celebration our household seemed to take on the horrors of war.  F-bombs bursting in mid-air as my husband/caregiver and I verbally slash at each other.  We are exhausted! Unless we are destitute and piss what little money we have away, we do not qualify for any

Just because my husband says he loves me does not make him a good caregiver. If love is what I have then love is not getting the house clean, or making sure I have all the medications that I need, or making sure I have truly nutritious meals, or have any attention whatsoever to my emotional condition. Any suggestions that I have are met with much more than light resistance, in fact I am accused of heaping too many tasks on and being a shrew that always knows what's right and this stuff is told to me heavy on the sarcasm and derision.  I do not deserve to have mental anguish foisted upon me in what is likely the last years of my life. One would think that a man at 58 years old would develop some kind of a loving conscience. But instead I have my dry drunk husband that is good at looking good to others while behind closed doors he heaps on the mental abuse and employs manipulative and bullying behaviors to get his way.  His Dr. Jekyll and Mr. Hyde personality makes it near to impossi

I had my first outing using my power wheelchair, a slick blue  Permobil C300. Consistent deterioration of the muscles in my legs, arms, hands, feet, torso and neck, made the manual wheelchair not a viable option for a weekend trip. This body needs support! My husband loaded up the manual and power wheelchairs into the back of the Ford Ranger pickup truck. No wheelchair van as yet. He used a two-piece hinged portable aluminum wheelchair ramp and walked it up using the controls.  Thank God I didn't have to remain seated in it I would've felt like grandma Clampett rolling down the highway.  Anyway, we loaded up everything we could think of including my curved fat-handled silverware, scooper bowl, nonskid mat, Poise pads, supplements, waterbottles, beach towels, a body pillow to wrap around my torso and a horseshoe-shaped pillow that clamped around my neck.  Several false starts later and then down the road we went. This is a new adventure for us you know traveling with all the par

I've been reading some posts from fellow bloggers with this disease and I'm feeling lame.  It appears that they continue to blog whether they feel good or bad.  While I've been mired in despair and self-pity and instead of capitalizing on expressing those feelings I contained them within and I suspect made things worse on myself.  I have had the tendency to hold in my emotions and my massage therapist believes that is the very tendency that could have brought about ALS in the first place. I have been blessed with a massage therapist that discovered me and approached me with the idea of finding out exactly how massage therapy works with an ALS patient.  She has offered me her services free of charge if only I will be her guinea pig and report back honestly how each of her modalities work on me.  I will tell you, I believe I got the better end of the deal.  She works with wounded warriors out of one of our local military bases as well as her home and she is very proactive i

My mother always said that family would stick with you until the end. This was in response to my obvious preference of friends over family when I was but a teenager.  I thought it was bullshit back then yet another ploy to try to get me under strict control.  But secretly, part of me desperately wanted to believe. And so I did. As a young adult, when life would kick me in the teeth, I would pick up the phone to talk to my mom.  Did it ever really help? No.  Most of the time it was painfully obvious that she would much rather sit smoking cigarettes, watching her daytime soaps, drinking her Pepsi's.  Where was the good advice?  Where was the tender understanding?  My anger and my rage grew over her apparent indifference. As a thirty-something divorced mother, one that entered recovery for alcoholism, I realized that my mother did the best that she was able with the tools that she had.  After years of recovery, I realized that she was human and had a limited attention span.  L

It is difficult to write honestly.  I think that goes double when you rely upon others for your daily care.  How does one say what they really think? How do I let it all hang out, warts and all? I believe it is impossible to be positive 100% of the time.  If you knew this about me, would you still like me?  I have prided myself on my positive attitude in the face of this freight train of a disease.  And I am ashamed of my negative emotions.  But I feel I shall burst apart in the clichéd million tiny pieces if I hold in all of this pain. In the past few weeks I have cried so many tears, literally gagging on my emotions that erupt out of me at inopportune times.  My mate does little to try to stem the flow, except that he doesn't want me to scream too loudly so the neighbors know what's going on, or write about my pain so that family or friends are alerted. Is it that he is abusive? Yes. And truthfully, so am I. Pride? Hardly! Bald-faced truth.  Our world has been turned upsi

Was sucked into my own life drama, releasing a caregiver and losing a friend in the process.  We all have such a story to tell and becoming such a rare bird, a PALS (person with ALS)! I am writing little blurbs here and there in my personal blog.  Mainly for the catharsis.  Not always able to tell others what I really mean or even fully understand what's happening in my life or my body.

Gonna take me awhile to "exorcise this demon".  The farther away I get from releasing my friend from caregiver status, the more I realize the magnitude of the bullet I dodged. I realized the reason she shied away from transporting me in her vehicle (while we shopped for our wheelchair van) was that she was concealing the fact that she went back to smoking.  I clearly stated that I would only take on a non-smoker citing close proximity and eventual life-threatening breathing difficulties.  Once, climbing in to her car, the smoke was palpable, the butts were in a bottle of water, not to mention her e-cigarette habit.  The worst had to be the lies I told myself on her behalf.  Every time she helped me undress/redress my nose was pressed against cigarette stench that I kept thinking was due to her chain-smoking roommate.  Now, I know better. Shame on me and my assumptions.

The latest news is that I had to let a caregiver go.  It was incredibly hard decision. Painful and nasty and I likely lost a friend out of at the deal.  The bottom line is that it wasn't working out. When I first approached my friend I knew that she had helped a little with respite caregiving of her stepfather who was a stroke victim. I knew that she was a breast cancer survivor as I had the honor of being her friend throughout her ordeal, sitting with her during chemo, being with her on the day of her mastectomy, and visiting her at her mothers home, post-surgery.  I know that she exhibited courage, grace, and dignity in the face of her cancer experience. I knew that she had quit smoking and that she was bipolar. I also know that we lost touch for over two years as I am dedicated to being a sober woman and she was unable to remain so at some point following her ordeal. I also knew that she was down on her luck, living in a bad neighborhood, living with an overly-needy manipula

I am not-so-independent but wish I were more so.  Stopped driving due to the rapid onset and pervasive weakness especially in my right-dominate hand.  Sold my Harley Davidson Deluxe and Subaru Outback, shopping for an economical wheelchair van (Dodge or Chrysler?).  Legs getting weak, balance is not-so-good but I do all I can to preserve what I have: good nutrition, supplements, water aerobics, arthosage and manual ligament therapy. I'm getting limited care at the University of Washington in Seattle but get nowhere when I've mentioned voice-banking.  Hmmm.  Considering Virginia Mason as most of my PALS friends get fabulous care. We are active in our local ALS support group. I am on social security disability and Medicare (which I've paid into all of my working years) but I lost my job at the onset of my symptoms.  Was working as an accountant for a small mfg business who tried to coerce me to commit blatant fraud.  I got super-stressed as I held to my integrity.  My fi

As you may or may not know, ALS tends to rob sufferers of their ability to chew, swallow, and generally savor food as we once did.  Excess salivation is only the tip of the "iceberg".  With the loss of muscle mass (even in the facial region), the act of eating becomes a tiring exercise in futility.    To extend our lives, some of us resort to allowing a peg tube to be surgically installed into our stomachs else we would succumb to death by starvation, slow and insidious.  I remain undecided on this measure but will likely opt-in. I love food!  I consider myself a "foodie" as well as a compulsive eater but I must stipulate that I LOVE good quality food.  Don't give me a Hershey bar, I prefer Lindt or better yet, Boehm's Gianduja as my husband will attest.  Why go to Applebee's when one can score better taste and quality having the $15 "3 Course Lunch" at Palisade? My appetite has changed since the onset of ALS.  As with most of my activities

Despair!  I haven't blogged for days because I am ashamed to admit my feelings at this point in time. Up until recently, I have been surprised at my acceptance at having a terminal illness.  I have been kind and considerate of other people's time, energy, and willingness.  I have been patient until people can work me in.  I have waxed eloquent when speaking publicly, citing how God has my back and holds me in the palm of His hand.  But lately, I resemble something akin to Godzilla.  I am frustrated when someone promises to do something for me and "forgets" to pick me up or changes their plans late in the game, not allowing me time to make new arrangements.  When I was able-bodied, it was no big deal but today it means I don't get to eat, I run out of water, have to walk around in bedclothes, soil myself, or go without therapies that are critical to maintain what muscle mass I have left. My husband works the graveyard shift for a sheet metal outfit, currently w

I never mastered the perfect spiral on a football...but I played a mean game of hoops for a short white girl.

I don't know what can be more volatile than dealing with a Power of Attorney; durable, general, or limited. It feels as if I'm signing away my rights, as well as my power; to sell my car, to sell my portion of property, to even have a say in how I am treated prior to and after my death.   My husband and I are wrestling with that question now. He asks, "What's the big deal? It's so simple."  While my brain screams, "How can you not get this?  And how can you be so callous?!" ALS is robbing me of physical control. This feels like my last bastion of control and the "what ifs" abound.    What if you decide you don't love me anymore? What if you get sick of all this stuff and leave? What if you fall in love again and I'm still alive and physically incapacitated?   What if two years down the road, (I am unable to have sex or you're not inclined to have sex with me), and you have a dalliance with either a caregiver or a stranger? Wh

The good news is that my FRS (Functional Rating Scale) remained the same at 29. Bad-ish news is that my lung function FVC (Forced Vital Capacity) went from 110% in January 2013 to 98% in April (today). What's really going on? Head-to-Toe: Breathing is good, swallowing is mostly good (must be mindful, avoiding popcorn, small pills do not trigger swallowing), no drooling. Woo-hoo! Cannot write (right-handed), fingers curl inward and tremor or trigger upon effort to use, much atrophy and muscle spasming, cannot raise right hand/arm, "frozen shoulder" resolved through massage therapy. Left hand beginning to atrophy and lose strength and dexterity. Employing speech recognition software to "write" with computer. I walk with assistance, cane or walker. Painfully slow on stairs and shaky. Cannot recover from falls. Use power wheelchair in my home. No wheelchair van, yet. Can get severe muscle spasms in thighs, calves, and feet. Eating requires assistance to cut

Where on earth did I pick up ALS?  Some say sporadic ALS may be caused by toxin build-up from our environment.  I'd like to chronicle my exposures as I understand them. I did not serve in the military but I was a Navy brat, moving from place to place.  Some of the suspicious places we lived would be any military housing and we lived in some lulus!  Inadequate navy housing located near Signal Hill in Long Beach, California was a filthy installation, riddled with cockroaches.  Bug bombs were a common ritual and the clean-up was performed by yours truly as a grade schooler.  I remember the scent and taste of the insecticide as we were required to scrub using elbow grease, a rag, and a bucket of water.  The place was surrounded by oil wells and we drank tap water exclusively.  Additionally, we lived in Cabrillo Naval Housing, Tierra Santa Naval Housing and a string of cheap apartments where we always battled cockroaches with aerosol poisons. Throughout my life I have been a cleaner

We have added a naturopathic doctor to my care team. A Bastyr-trained teacher, she works out of Edmonds Wellness Center, some 40+ miles north of us. Dr. G administers my once-per-week Glutathione IV which is a powerful antioxidant that is supposed to halt cell death. Of course, ALS has no cure. We are aiming for slowed progression of symptoms particularly with regard to speech, swallowing, and breathing. So far, so good. Additionally, we've been giving homeopathy a try at the Doc's behest.  She thinks the combination of glutathione and homeopathic remedies can slow this rapid progression of ALS.  Our "eggs are in her basket" so to speak.  My first try was lackluster.  The second caused a dramatic setback, increasing fasciculations, decreasing energy and strength.  While we saw this as a bad omen, the Doc saw it different.  She thought the reaction was indicative of the right combination needed to combat my symptoms.  We have decided to give it another go. Here we

ALS is a devastating illness to be sure.  It robs us of the use of our own appendages; arms, legs and our heads (but not our brains).  It robs us of our ability to speak and even to breathe eventually.  What possible humor can come from such horror?  The inevitability of our demise hangs over our head.  What's funny about that?  Plenty, depending upon one's point-of-view. Early on, I had been warned away from ladders by my ALS buddies at the support group and agreed to leave the climbing to Rod.  However, auto-pilot kicked in and in my mind, I was able-bodied once more.  I wanted to add paprika to my eggs and automatically grabbed my wooden 3-step Ikea stool.  Bing, bing, bing up I go and freeze.  "Honey?  Will you come help me down?", I warble.  He was not amused. At Christmastime an intestinal flu bug made the rounds and I caught it.  For days I was reduced to a state I can only describe as infantile.  Stuff was rapidly coming out of both ends.  My weak-stomache

At long last I have found a source for intravenous glutathione as well as a source of administering.  In our region, we have a famous college for naturopathic medicine, it's not close to me and it's not cheap but I have an opportunity to try it.  Through this college I discovered a provider that also wants to try out homeopathic remedies and also chelation therapy under the assumption that heavy metal toxins may lie at the source of this autoimmune disease.

Out of Neurochondria until the 30th. Same day I should receive the Ubiquinol. Feel like it is none too soon. Keeping stocked up on my supplements is a freaking chore. Thanks to PatientsLikeMe.com I learned where to get Glutathione suppositories as I am stuck for a source for the IV. I hesitate at the expense ($150 + $30 shipping) but will pull the trigger today anyway. Noted that www.WinningTheFight.com is unwilling to allow registrants to share sources which increases our burden. I know they don't want to cross the line into being accused of running a for-profit site but it's a very real dis-service to dangle this potential treatment before our eyes and not allow us to share info to locate the components. It's appreciated that Deanna and Dr. Tedone choose to share this protocol with the world but they seem oblivious to our plight...how to find and have components administered. We are not all blessed with money and connections.

Discovered a slew of my supplements in a bag that my husband packed for an outing yesterday.  Failed the protocol yesterday.  Will I ever get it right? Blew today as well with the AKG capsules.  My ubiquinol didn't show up yet either. Guilt, shame, remorse.

The sun broke through as we wound down back country roads of rural western Washington.  Called my 87-year old uncle to catch up on the past month as my husband drove us (in the Subaru) to the Abate Swap Meet in Monroe, Washington.  Two birds...one stone.  I got to learn all about his seven children and bunches of grandchildren.  All of whom I've never met, including my uncle.  Another blessing of my ALS diagnosis...I guess people want to meet me before it's too late. This was my first public motorcycle event since my diagnosis.  I figured that I'd be in too much emotional pain over not being able to ride a motorcycle anymore.  Fortunately, it wasn't so bad.  We had an agenda, I'm selling my 2006 Harley Davidson Softail Deluxe and I had flyers to deliver as well as family and friends to socialize with.  My brother and sister-in-law are very active in the motorcycle community and we have mutual friends.  This was also my first outing using a manual wheelchair...ki

Can't quite call it a fall, but I did a slow-mo sink to the ground while loading up my bookshelf. Tried to recover and ended up flat on my back in front of the entry door. Talked to the cat until my husband tried to walk back into the house. (Oh, the comedic giggles we get to have today!) Once upon a time I would have railed in anger or cried in self pity.  Today, it was total acceptance.  Well, what else could I do?  On my knees next to my walker, I attempted to crawl back up.  No dice!  I pushed it away and went to hands and knees to discover the arms without strength and I did another slo-mo as my face touched the tile entryway.  Well, this is new, I thought.  Uncomfortable facedown on the cold tile, I worked my way onto my back.  The cat was delighted!  Her little face loomed over mine and her whiskers tickled my face. "Well, it's you and me, Grace, and I sure wish you could open the door or call somebody."  She couldn't.  So, I went with it.  I was able t

Began my day in the usual manner, awaken (rolling over to grasp the bedside grab bar to assist) align my hips and kick my legs out to rock up to sitting position, toilet (with or without help depending on energy and bedclothes), swallow a bunch of capsules and tablets (supplements) with water, sit down to apply my make-up in a modified routine (using built-up brushes and powders - still using Mary Kay Cosmetics for the most part.  Also a handicap shower chair at the open sink cupboard for my feet serves as my make-up table).  Husband mixes up my AAKG powder with juice and sets me up with breakfast, usually yogurt or warmed-up steel-cut oats.  I sit down to eat.  No longer  capable of eating on-the-fly.  Each bite is an effort to raise my fat-handled curved silverware to my mouth (with my non-dominant left hand) and then I must be mindful to chew and swallow with great care lest I choke or my swallow mechanism misfires.  Go back to brush my teeth with the SoniCare(R) toothbrush, seated

I was sitting here minding my own business, blogging away, and speaking positive about life and how I keep my "eyes wide open", when Blam! reality smacked me upside my Pollyanna head.  I type on my laptop with some difficulty but I persevere.  The fingers on both of my hands seem to have our minds of their own.  They fail to extend, they shake, they ache, and they tremor.  They frequently and involuntarily, tap a combination of keys that open up new pages, show me history, and even delete prose that I've worked on for lengths of time.  They also fail to depress keys leaving me wondering what my darn point was anyway.  Most recently, these tremoring fingers have taken to making my on-screen text smaller and smaller as I attempt to get my thought out of my head and onto electronic media. I wish that I could say that I handle these instances with dignity and grace but that would be a lie.  I curse.  Oh, I patiently take a bunch of it but inevitably I reach my maximum allow

I watched one of my guilty pleasures, Grey's Anatomy, on my iPad last night.  (SPOILER ALERT!!!)  In this episode, "Transplant Wasteland", the doctors of the fictional Seattle Grace Mercy West were dealing with several patients who were either needing organ donations or prepared to give organ donations.  Naturally, I was most drawn into the drama involving Dr. April Kepner, played by Sarah Drew, who is appalled when one of her patients living with ALS decides to refuse further treatment and tells her that he wishes to do a DCD, donation after cardiac death, as he wishes to disconnect from the ventilator.  He mischievously welcomes her to his "funeral".  Kepner attempts to talk the trached and vented PALS, Brad Parker, out of his decision by offering alternatives, which are flatly refused, then counsels him that he is depressed, which he denies.  Finally, he tells her that he did not include her in his decision because he "didn't want to waste any of his

It's seems like such a simple thing.  I've been attending to this dirty business for most of my life, at least since I was a little girl.  Never had I thought I would be powerless over a bathtub, soap, shampoo, or washcloth but I am.  My husband has been accompanying me in the shower (in our bathtub) for months, even prior to diagnosis due to the weakening of my right arm, hand, and fingers.  Raising my right arm over my shoulders has long been beyond my ability and I even developed a case of "frozen shoulder" though I've worked hard to free it up with the help of my massage therapist.  Even so, an effective shampoo by my own hand is out of the question. So, this week marks the end of soaking in the bathtub for me.  My husband assured me that IF I were unable to get out of the tub, he would help me out.  It was impossible for me to get out and I cried piteously over the loss while shivering naked.  My husband put the dreaded gatebelt on me, stepped into the tub

It's been a month and I am still not 100% on the protocol.  Still no Glutathione IV (nor suppositories) and I still struggle with the hourly AKG capsule and I am still light on the COQ10 (Ubiquinol).  I am ashamed of this fact as I've said from the start, I would do anything to arrest this disease.  Apparently not.  At this time, I can only claim partial success and I guess that's fair since I've only managed to be partially on board. I still get fasciculations in varying locations and I'm still getting weak and losing some ground in my legs/ankles/feet.  Though I've had phenomenal days when I've walked relatively strong.  I have made some headway with the strength in my right hand/arm/wrist but it wanes in my left.  My greatest achievement appears to be in my energy.  I can be awake and present many hours per day, taking naps on very few days.

… Out of every season of grief, or suffering, when the hand of God seemed heavy or unjust, new resources for living were learned, new resources of courage were uncovered, and that finally, inescapably, the conviction came that God does "move in mysterious ways His wonders to perform." Twelve Steps and Twelve Traditions, p. 105   By now, you may be aware that I have a terminal illness.  I am not unique.  People all over this Earth are getting handed big, bad, scary diagnoses that are sure to end in death everyday.  Mine happens to be Amyotrophic Lateral Sclerosis , (a.k.a ALS, a.k.a. "Lou Gehrig's" disease, a.k.a. Motor Neuron Disease, a.k.a. MND).  Lots of aliases for a big, bad, scary disease that affects approximately 30,000 souls per year. This particular disease, voraciously and insidiously attacks the upper and lower motor neurons robbing voluntary muscles of their function, leaving the afflicted paralyzed and helpless.  It steals the ability to walk,

Last night my husband and I went out on a spontaneous "date".  Following a visit to the car repair shop, we found ourselves near the movie theater and popped in to see the movie, "Jack Reacher" with Tom Cruise.  This is a real deal as these days we are much less spontaneous due to...well, you'll see.  We knew we were in new territory as this was our first visit to a theater since the ALS diagnosis.  (I use a cane to walk and cannot use the restroom on my own.)  No problem, right? Attitude adjustment for certain.  First thing in the door we are gloriously assailed with the waft of hot popcorn...Yum!  But off limits to me with my present swallowing issues.  (The kernels collect at the back of my throat until I inhale them involuntarily and choke...Yikes!)  We bypass the snack bar altogether to avoid temptation (and to conserve money). Next, I look for a "family restroom" and find none.  Yikes again. We've already spent our money and I've go

Day 25 on the Deanna Protocol and there are gains and losses. In the 'Gain' column is moderate strength increase in my right hand, wrist, and arm. I have more energy on a daily basis as naps are infrequent and I can stay awake messing with my iPad until late into the night. I have had some strong walking days when I've left my cane behind and walked in a more normal heel toe manner leaving behind my lumpy duck walk. I even had a couple of dancing days. In the 'Loss' column is that fasciculations continue and my left hand, arm, and fingers are weakening. Walking is also in my losses as some days I have really limped and staggered although, I suspect that is attributable to energy dips due to menstruation. (Yeah, I still do that.). I have also neglected my water aerobics since I am unable to deal with tampons. That's got to be affecting my mobility adversely. I have yet to work out the Glutathione IV and we just realized that I'm not getting full dos

I try living my life happily in the present, focusing on the positive while ignoring the negative, as often as possible.  I imagine that I must be ungrateful on those days that I awaken with the "Laundry List" of ignored chores burning in my consciousness.  Upon awakening, the list that burns in my mind is this: Bring in the bookcase that we might use it. De-thatch the lawn.  Finish trimming the overgrown hedge.  Remove branches from "rough" along fence.  Burn or dispose of branches, hedge trimmings, and thatch. Clean moss and filth from new handicap ramp.  Finish handrail on stairs.  Paint or stain ramp white to match house trim.  Add in painted 2x2's.  Complete deck and paint all except treads. Wash car and truck.  Remove extraneous crap from same.  Vacuum same.  Apply AmourAll to surfaces. Get estimates for bathroom remodel - Curbless shower (tiled, not an insert), sliding shower faucet, two sinks in a new cabinet (one for hairwashing), handrails, A

Day 22 of the Deanna Protocol and I have finally found a vendor that has all the vitamins, minerals, and supplements in one place for purchase. In the past I bought components from Costco, Super Supplements, GNC, local nutrition stores, and the grocery store. However, I still had to go to the Internet to locate Neurochondria, Cysteplus, AKG, and AAKG with a 1:1 ratio. As one can imagine, so many vendors takes a lot of time and effort (which PALS have in short supply). This vendor accomplished the logical...and put all the components together. Nutrivine Vitamins puts together the latest version of the protocol and ships out a 60-day supply and then autoships thereafter (a potentially attractive option). I'm still assessing costs at this time. Check this vendor out for yourself at www.nutrivinevitamins.com or call 1-888-663-3779.

I have just discovered the television series, Downtown Abbey , and I hate to admit it but it is wonderful. My newest guilty pleasure to be sure. Dreamers and schemers in both the upper and working classes. Who knew? Another guilty pleasure of mine is Doctor Who , another British television import that I absolutely love. Assuredly, they are vastly different shows... Abbey is staid, proper, and dramatic where Doctor Who is fast-paced, absurd, and fun. And now my husband has us watching Doc Martin , another television program from across the pond,that is both staid and absurd about a former surgeon who has a blood phobia.  Who knew that we'd go so gaga for these shows?!  Byproduct of turning off cable television.  Netflix streams all of these shows.

On the average, I take 35 pills per day to follow the Deanna Protocol.  This includes chalky pills, vegetable capsules, and sublingual tablets.  This does not count the nine doses of Arginine Alpha Ketogluterate (AAKG) that I take mixed into fruit juice three times per day.  This is Day 18 on the Protocol and I'm doing much better at taking the hourly dosage of Alpha Ketoglutaric Acid (AKG) and getting the benefit of reduced fasciculations.  This is what I've been waiting for. No sooner did I type the last paragraph when my middle finger on the right hand went into a rapid fasciculation and hammered my wireless mouse for a few seconds.  Admittedly, I got up very late this morning and started my supplement routine hours in arrears.  Also, as I recall, my fingers first stopped extending, then upon forcing an extension, they would trigger.  Next they spread from each other and would tremble and/or twitch.  I'm hoping the isolated fasciculation (or muscle twitch) is a step

I have been fortunate enough to have had massage therapy many times throughout my adult life and I have had no doubt about the positive impact it makes upon the human body, particularly my human body.  I've had relaxation massage as well as treatment massage and many sub-specialties under each of these.  Relaxation massages were Swedish, Shiatsu, and hot stone massage.  These were wonderful and soothing experiences that gave me a sense of well-being and peace.  I was lucky enough to work in a chiropractic office that engaged the services of a licensed massage practitioner that was just starting out.  As any new professional, she would have lulls where she'd get me up on the table to practice her technique.  I was luckier still that she would mix her own lotions with essential oil concoctions using these and soft music to deepen relaxation.  I will never forget those delicious times. I have also been unlucky enough to have been in a few car accidents, but lucky enough to hav