IntrinsicTina

Countless muscle spasms throughout my body, the kind that really hurt, focused primarily my neck, throat, and jaw. Usually triggered by effort, turning my head, yawning, looking upwards to name a few activities. Automatic stretches elicit calf, foot, ankle, and toe spasms that pinch and release.. My hands and arms are propped atop pillows to stretch my torso and allow my diaphram to expand to capture as much oxygen as possible. And still, my fingers trigger, my wrists contract, my forearms spasm. If my arms hang at my side, the weight coupled with gravity steals my air, leaves me gasping and panting. Although, I struggle on the commode with a lack of musculature, still there are zings to remind me there is more left to die. This process is not even close to over. .  I am transported to and from my bed strictly by overhead lift. I am lucky enough to possess a first class sling to assist in this endeavour. (Thank you UWMC!) It's a very large pocketed affair that cradles me loving...

Today marks two years from my diagnosis date. ALS sufferers generally live two to five years after diagnosis. I'm grateful that I've made it to the two year milestone and I still feel relatively good. I still take food by mouth although I am careful about what I eat. First to come off my menu was popcorn. No matter, I replaced it with Jelly Bellies, buttered popcorn flavored. Yum! This year I took peas and corn off my menu as well as soup with mixed consistencys, like chicken noodle and vegetable. I miss corn. The item that I miss the most is cold, juicy watermelon. That was my craving when I was pregnant with my daughter. It's my go to during the summer and I could put one away a day. This year I got choked up on one serving. I can still drink thin liquids but I have to extremely careful to tuck my chin to swallow. Yes, I occasionally choke and cough. I am no longer able to walk even with assistance. I think the last time  I walked was June, it felt like my knees were go...

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.

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...

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...

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...

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.

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...

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...

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 was "Meet with the Dietitian" day for me at the U of W immediately following water aerobics.  My husband packed up all the pills and potions and off to the Emerald City we went.  We shared about the Blood Type Diet, massage therapy, water aerobics, and the Deanna Protocol and the recent positive changes with regard to strength and energy gains.  She introduced us to LiveStrong.com for food, water, and exercise tracking.  My husband was disappointed as he had other expectations but it went about how I expected.  I kind of know what I'm doing as I do the research prior to committing to a new modality or treatment.  Poor guy, he's regretting the bill already but he doesn't trust me...therefore, he pays. We hit the 5 Spot up on Queen Anne for a late lunch where I had my first Black Bean Burger.  It was "the Bomb"!  Not a gut bomb.  Served up piping hot with avocado on a soft bun with a green salad and Pickled Onion and Pepper side.  ...

I awoke and headed out to a morning meeting.  My husband did not get a speeding ticket this time like he got last time he took me to this particular one.  We got to see a ring-necked pheasant right beside the road as we turned onto church property.  He was a beauty!  Rod and I both thanked God out loud for that gift.  I always get lots of social contact here not to mention hugs and kisses. So very worth the effort to rise and shine, get dressed, apply make-up, and eat in a hurry to get out the door. I noted my fatigue as soon as we rolled out of the parking lot and I had only been awake for four or so hours.  Most of my day was spent at home which worked out fine.  I had an unusual number of telephone calls from friends today.  At last!  I was starting to think I was not even gone but already forgotten.  So glad that lie was only in my head.  I even had a visitor, my friend, Judy, who asked if I could help her with a glitch in he...

Busy day!  My day began by picking up my mother to head off to water aerobics.  My husband is great about "returning the favor" and most Mondays  Wednesdays  and Fridays my sister, Renee', the one with 3rd stage multiple myeloma (cancer), drives my mom and I down to the local pool to participate in this invigorating activity.  This particular Monday she's got chemotherapy and cannot participate. My girlfriend, Judy, did show up to workout.  What a treat!  Also, my new friend, Carol, whom I met at the pool, who has Neuromyelitis Optica (another paralyzing, degenerative disease), was also there and I got to be "of service" to her by lending her a stabilizing arm for certain exercises.  What a surprise, I'm not so stable out of the water but in the water...I'm a rock.  LOL!  Carol is a great person, she's a former social worker who has a wealth of knowledge of resources and is willing to share.  It's al...

It occurs to me that my world has become very small, smaller in the past week, as I have started the Deanna protocol. Not through any burden or limitation placed upon me, just life keeping on life-ing.  I have been neglecting my precious meetings which brings me into physical contact with treasured friends and new acquaintances and I must examine this neglect lest I isolate myself. (One of my quirks.) Monday found me in Ritzville, extending a weekend visit with my husband and a close friend, then taking the long way home and stopping off at our cabin. Arriving home in the wee hours of Tuesday, I choose to sleep late, missing my meeting but getting a good start to the Protocol and conserving my energy. Wednesday through Friday I choose water aerobics and in so doing, opted out of my Thursday meeting due to schedule conflict, and of course to celebrate my husband's 58th birthday.  Wednesday, following aerobics, was an impromptu trip down to Portland to view deals on motor home...

Yesterday, due to a communication SNAFU, my routine medications of Advil LiquiGels, Probiotic 10, Gabapentin were halved and I missed the Ditrapan altogether.  As a result, I awakened with tight and stiff joints and hobbled out of bed.  Oops!  Today I got it right and managed to take them both am and pm.  I took the following as part of the Deanna Protocol: AAKG 18 g (First day of full dose!) AKG  300 mg caps x 7 = 2100 mg (half dose to start) Glutathione 50 mg x 6 = 300 mg (350 mg is full dose) NAHD 40 mg (full dose) GABA 500 mg (full dose) CoQ10 200 mg (full dose) B Complex (full dose) Bee Propolis 500 mg (full dose) 5-HTP 50 mg (full dose) Creatine 800 mg Ginkgo Biloba 120 mg (full dose) Glycine 1,000 mg (full dose) Magnesium 400 mg (full dose) Methyl Folic Acid 2 mg (full dose) Phosphatidycholine 1,680 mg (full dose) Taurine 1,000 mg (full dose) Theanine 200 mg (full dose) Vitamin D3 5,000 iu (full dose) Still missing from the regimen i...

We received the AKG in the mail but realize the Cysteplus, Neurochondria, Glutathione, and NADH won't arrive until Tuesday.  That being the case we headed out in search of glutathione and NADH.  They had glutathione at GNC and NADH at Super Supplements.  Unfortunately, brick and mortar retailers don't seem to stock the other two products.  We await. I had another high energy day!  It started with another water aerobics class, my third this week.  Then we headed to the nursing home for a meeting with the social worker on my husband's mother's behalf.  From there it was a bite to eat (teriyaki chicken), two supplement stores, and two grocery stores.  Through it all, my husband doles out my "meds" (actually just the protocol capsules and mixed powders) right on time.  He is really working to improve my ALS condition.  I really appreciate his support and I am surprised at it.  Initially, he was not on board with an "alternative" trea...

Today is my husband's birthday.  It is also the day that the ALSA representative pays us a visit. (Not a good combination.)  My husband is a huge procrastinator and something of a spoiled brat.  The trouble is that the house is a mess and I'm supposed to be conserving energy.  Yeah!  You guessed it, while he watched westerns all morning, I managed to do water aerobics then break all the rules desperately trying to clean my neglected house.  Eventually he got with the program but after an hour he's a dawdling little kid and guess who gets to be "the heavy"?  Me.  It's a quarter til and she's due any second he resents the crap out of me about now but the freakin' place is presentable...and I am exhausted!  Wah! Okay, the visit was a pleasure and hugely positive.  We learned of more resources available, specifically where to buy a PenAgain (r), as well as a retrofit bidet toilet seat.  We also got a lot of validation about changes w...