IntrinsicTina

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...

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 u...

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.  S...

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 t...

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 inevi...

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 ...

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, step...

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 w...

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 ...

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 cab...

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 (o...

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 accident...

This is Day 14 for me on the Deanna Protocol.  Apparently an update was posted to the Winning the Fight website on February 24th and I neglected to check for recent versions until today.  The main change was the elimination of one of the expensive substances, NADH, for a lesser expensive and more effective one, Niacin (flush free).  While this is good news overall, I have a whole unopened package of the former. My husband noticed that he was miscalculating dosages for me with regard to the folate.  It's easy to get emotional as it directly affects my health and this is the third product on the protocol he boo-booed on.  I figure this should be my responsibility but he is pretty darn possessive about it.  Truth be told it is nice to not be burdened with trying to open so many bottles each day but I do wish the surprises like that would end.  One other substance we can't seem to get right is the AKG capsules which must be taken every hour that I am awa...

Tina snuggling her beloved ALS afghan. Got a great idea to weed out my yarn stash.  I was an avid knitter and crocheter, as well as a budding spinner and novice designer, and have accumulated a nice stash of specialty yarns over the years.  Since getting limb-onset ALS, I lack the fine motor skills to participate in this beloved hobby/therapy.  I know I can gather it all up and take  it to any senior center but I LOVE these fibers and each skein and ball has a story behind it and I want to be the one to decide who gets each gorgeous piece.  Most will go to my daughter who followed in my footsteps and knits and crochets beautifully.  Check out the lap afghan she knitted for me in ALS colors last Christmas! (Regrettably, no, I did not teach her.) Jennifer crochets first blanket - 2006 Through the years crocheting bonded me to my grandmother and knitting bonded me to my mother as each had their specialty.  I crocheted to my heart's content with ...

Another day, another day of full dosages on the "protocol".  (Again, note that I have NOT gotten the glutathione IV, nor have I directly ingested raw coconut oil or medium chain triglyceride (MCT) oil.  However I do incorporate coconut oil in my (husband's) cooking and am very partial to it on my steel-cut oatmeal.  I do not miss butter as a result. I'm having very few side effects thus far except muscle spasming, charlie horses, in my calves, feet, and backs of my thighs.  As well as occasional cramps in my forearms which trigger various fingers.  I'm told that it could be due to not drinking enough water and since I've been tracking this on LiveStrong.com, I'm finding that could be a correlation. I'm still following the blood-type diet for the most part.  Though I have to be flexible to a certain extent lest I drive my husband crazy.  If he offers me ketchup or salsa, I decline, but if my food shows up with it, I eat it, say thank you and re...

Today I tackled two swim aerobics classes, count them, two!  Both shallow water, which I do each Monday, Wednesday, and Friday, and now the deep water class as well.  Of course, the deep water aerobics class required a little specialized equipment.  First, they had to install the "lift", a hydraulic chair, that gently sets me into the water and then takes me back out.  That worked out well but the floats they snapped onto me were horrible. The idea is that the bouyancy belt keeps one bouyant while one performs floating aerobics.  Good idea, not so good to strap the floats about my waist and in the back.  It kept forcing me forward in the water and my muscles are weak thus not a fair fight.  Some folks tried to help, attempting to adjust the straps, and offering suggestions (not knowing about the degenerative muscle disorder), and finally another set of floats were attached, this time in the front.  It was better but too restrictive not allowing ...