Today, seems to be the best day I have experienced for quite some time? I am encouraged. I introduced you to the concept of high dose Thiamine on Jan 31st. Having time to read a lot of Dr. Costanteni’s … when I obtained my first bottle, I jumped on board… (a little too aggressively). Therefor when I became more unstable, I had to back off! I also began to feel incredibly weary… the opposite of what I was hoping for. I recognized it as something foreseeable.. a healing crisis.
As I listened to Ellliot. (IN the clip which follows)… I wondered “who is this young whippersnapper, who has done this research?” I didn’t see what his qualifications were but when he addressed some of my concerns… and things began to make more sense to me, I felt enabled to make some decisions,
Since I am experiencing more energy now, I am going to continue to take the less expensive Vit B1 (as Thiamin HCL).
But I am also going to begin to supplement with a lower dose of a TTFD thiamine which is able to pass the bbb (blood brain barrier).
I’m going to TRY to be patient with my expectations on timing: . The whippersnapper said:
As the levels have dropped in the brain the enzymes have deregulated down,
therefore the transporters have also deregulated down
and when the message is sent to the body that the vitamin is available, it may take up to a year for the enzymes and transporters to get re regulated to enable absorption.
Dr. Costantini indicates within three months a person should be able to document improvement. He recommends having someone video tape you before you begin the protocol… capturing not only the pull test, but other manifestations such as walking (shuffling) arm swing, facial mask, talking, etc.
And periodically making updated recordings. “It is surprising how quickly people forget how bad they had gotten.”
Just looking back over my life… and what WE have accomplished:
My twin sister (my best friend) and I (and our parents) were guided by our older brother to discover the “Plan of Happiness” through the Church of Jesus Christ of Latter-Day-Saints.
“WE” learned to say “I” and gain our individual identities as daughters of a Heavenly Father which enabled us to move forward and have productive lives.
John (my other best friend) & I have been married for 51 years…planning for eternity. We raised ten wonderful children… who make us grateful each day for the time they shared with us, learning the joy of discovery, as well as the learning accomplished through trials and errors. They also are our best friends, along with their marriage partners.
And soon, now, our ‘baby girl’ [now a Mrs.] will be giving us our 23rd grandchild, their age ranging from 32 years to unborn. I have begun to write letters to each of them, in an attempt to keep connected thru the miles. I hope they will share ‘their memories’ with our great grandchildren.
We don’t have much, monetarily, to show for our lives as we transitioned through six different states. But we hope we have influenced lives for good as we were ‘professional parents’ for numerous special needs clients and transitioned to making friends of children and their parents as caregivers for our “Grandma’s Place Child Care” for fifteen years, prior to moving to Florida.
Also important through the years have been our extended family & Church family… many who have endeared themselves with us, either by serving us or allowing us the opportunity to serve them. Family are forever!
…I am also grateful for the 90+ followers of my blog … be ye PwP, caregivers of people with Parkinson’s or simply supporters of the quest for learning… I appreciate your support and words of encouragement.
I remember who’s daughter I am and I straighten my Crown!
I’m holding out hope… that the B1 Thiamine protocol I have begun will reverse the recent trend of losing my balance. It seems I can’t do simple tasks like consolidating the garbage cans, if it requires me to lean forward a little. John pulled me back upright by my clothing, when I tried that stunt recently. And of course I can’t carry much of anything and hold onto the cane.
I didn’t tell him about hurting my ribs falling across the lid of the bedside commode, until he saw the bruise last night. I’m not sure what triggered today’s stunt. I was washing my hands and must have turned slightly to reach a towel, when I found myself falling sideways across the shower chair covered with towels and rolling toward the divide between the shower and shelves. I expect John will see bruising on my left heel, my right shin and both arms… But the ‘talent’ part of the stunt was I stopped myself before hitting the floor.
I’d like to say it doesn’t count as a fall, because I didn’t hit the floor… but I know better. Just like in yesteryear we would have teased about how long we’d practiced to perform a stunt, we now realize it is serious business. John will proof read what I typed here, before I post it. He will be concerned. I am also concerned for his health, but he seems to have done a better job of learning to slow down and think before proceeding with a task.
He is such a wonderful caring spouse. I am grateful that he has taken over kitchen duty preparing breakfast for us every day. I appreciate how he assists me in and out of the car; And after our scripture study and evening prayers he helps me onto the bed. He is forever helping untangle my glasses as I transition from reading with prisms and walking with the others. He has stretched with undaunted patience as I turned over the writing of notes in birthday cards to him, and coerced him to learn to use the debit card at the checkout and ATM.
I tell him he is a ‘professional whiner’, but really he just has the most humorous ways about him, There is never a hint of peevishness or self-pitying in his banter… even when I asked him to remove the tub and replace it with an infrared sauna. Did I mention?: the day I agreed to marry him was one of the luckiest for me. I adore him.