Not all things are confined to Parkinson’s

John received a report on the MRI on his gallbladder. Although it is full of stones, surgery isn’t warranted. I asked her if he continues to take 2 Tblsp. Apple cider vinegar (she interrupted me, “Oh, that would be excellent!”) and a Tblsp. of Lemon juice in 8 oz. water, would it perhaps help dissolve the stones? (She seemed delighted, “Combining lemon with the vinegar would be even better!” The she effused to John, “You are lucky man, to have such a great supporter!!)

I obtained the proportions for the drink John & I chug each morning, from Sarah King, a Parkinson’s PT… and her link on gut health. I say chug, because I have discovered, no taste, until air hits your food, so I bottoms up my glass and swallow (from 8 to 11 swallows, depending on the day) and then gulp and breath after the glass is empty.

I attribute our freedom from capturing any colds or sore throats to our daily morning glass…

😋
along with a healthy dose of vitamin D

I went to a website offering 25 ways for Apple cider vinegar to change your life.

I have cut and copied a few of them here… The first definitely seems valuable, since weed killer has long been suspect for being a trigger linked to PwP

Weed Killer – A friendly neighbor turned me on to vinegar as weed killing alternative years ago and it’s even more effective than dangerous glyphosate. Just mix 1/2 gallon apple cider vinegar, 1/4 cup salt, and 1/2 teaspoon dish soap. It will effectively kill any plant you spray it on, so make sure you avoid the flowers and other plants you want to keep.”

“Be sure to always choose organic apple cider vinegar, to make sure it’s truly toxin free, as apples are a very contaminated fruit.”

“Shiny, Flake Free Hair – Apple cider vinegar is an excellent weekly hair rinse. It leaves hair looking shiny and soft. The acid in ACV helps to remove product build up. It also helps to balance your scalp’s pH level. Mix 1/3 cup apple cider vinegar into 4 cups water and rinse the hair after shampooing, then rinse with cold water. If you are having issues with dandruff, twice a week try spraying your scalp with equal parts apple cider vinegar and water. Place a towel around your head and leave wrapped for up to an hour. Wash your hair as you usually would.”

“As for sunburned skin, soak in a bath with 1 cup of apple cider vinegar to help ease the pain.”

“Non-Toxic Cleaner – It’s no secret that vinegar is an excellent household cleaner. What some people don’t know is that raw, unfiltered vinegar contains all the bacteria fighting benefits that some commercial vinegars lack. To make your own cleaning solution, simply mix equal parts water and apple cider vinegar, plus a little elbow grease, to get your home free of dirt, bacteria, and toxic cleaners. Don’t worry, the vinegar smell goes away as it dries.”

Flops and flips

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.”

“I can’t Believe I Did That”

Image may contain: ocean, sky, outdoor, water and nature

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!

Another stone to turn over

When I run across something I haven’t heard about before I just have to follow the threads. The discussion was on how much carb/Levo a variety of pwp took, timing and side effects they had experienced.

Deb posted: ” I mostly only take c/l when I leave the house to exercise, run errands or socialize. At home without c/l I am a bit stiff and slower moving but still functional. If I take c/l for several days I get dystonia. I also take high dose thiamine which has made a huge difference in reducing almost all of my symptoms. https://stopparkinson.org/en/table-of-content/

When I clicked on the link… stopparkinson…Right up front I saw: Articles should not be downloaded and used for any purpose without the written agreement of the editor.

So, I just want to recommend you click on the link! Thiamine is in the B complex we take… but that provides only 25 mg once a day! That is a far cry from what they propose! I messaged to Deb, to ask her about her daily consumption.

Deb responded, “I use 500 mg -vitamin-b-1 . I take 2 at breakfast and 2 at lunch (2000 mg total). I was really struggling with balance and tremors but high dose thiamine gave me my life back.”

We exchanged emails… she typed, in part… “I hope the b1 helps you. It doesn’t work for everyone, but for me, it was life changing. I was diagnosed 4 yrs ago at 58. ….. A year ago I could not walk without a walker and just taking a shower would wipe me out for the day. I could barely move my body and needed help dressing. At my last appointment with my neurologist in Dec 2018, I was in a wheelchair and could barely stand up. They told me my only option was DBS surgery.”

“Just about 1 year ago, I stumbled on the information about high dose thiamine. Within 3 days of starting, my balanced returned and I no longer needed the walker. Within 3 weeks I was driving and going to yoga classes. It was quite an amazing change!”

“I have spent the whole year regaining my health and strength. I exercise every single day …… Some days I almost feel normal:-)”

SO… b1 is water soluble, so it doesn’t build up in the body or become toxic. A person can’t over dose on it. It is a vitamin, so it isn’t net work marketed. At .10 cents per capsule, I figure ‘nothing ventured, nothing gained.

I will keep y’all informed.. when the capsules arrive, the protocol I follow and ANY RESULTS… positive or negative.

On my way…

I finally received my first bottle of Stem Enhance Ultra on Jan 21st, 2020. Additionally, we received another product from Cerule.com called Plasmaflo. Because I GENERALLY attack things rather aggressively, I would probably take twice the recommended amount, if it was cheaper. Still averaging $ .83/per capsule, it is way cheaper than the stem cell therapies offered through medical providers.

I have decided to take 3 Stem Enhance and 1 Plasmaflo spread out through each day. Slow and steady… like the tortoise… I hope for victory.

I hope the prescribed CARB/LEVO I take to temporarily boost the levels of dopa in my brain, act as a conductor to guide the stem cells to where the dopa would be produced in a healthy brain. I hope for synergy: the interaction or cooperation of two or more substances to produce a combined effect greater than the sum of their separate effects.

Growing small… a better understanding

I wanted to share this lady’s message. I transcribed one of her pieces from Robin Morgan’s TED talk in 2015. As Karl Robb posted in his blog “A Soft Voice in a Noisy World”…Her gentle cadence and masterful verbiage put her finger on many of the concerns, frustrations, and unknowns in dealing with a most mysterious illness.

. No Signs of Struggle

Growing small requires enormity of will: Just siting still in the doctor’s waiting room watching the future shuffle in and out, watching it stoop; stare at you, while you try not to look. Rare is an exchange: a smile of brief, wry recognition. You are the new kid on the block. Everyone here was you once. You are still learning that growing small requires a largeness of spirit you can’t fit into yet:

Acceptance of irritating help from those who love you; giving way and over, but not up. You’ve swallowed hard, the contents of the “drink me” bottle and felt yourself shrink. Now, familiar furniture looms, floors tilt, and door knobs yield only when wrestled round with both hands. It demands colossal patience, all this growing small:

Your diminished sleep at night, your handwriting, your voice, your height. You are more the incredible shrinking woman than the Buddhist mystic, serene, making do with less. Less is not always more. Yet in this emptying space, space glimmers, becoming visible. Here is a place behind the eyes that some would call diminishment.

It is a place of merciless poetry, a gift of presence previously ignored, drowned in the daily clutter. Here every gesture needs intention, is alive with consciousness. Nothing is automatic.

You can spot it in the provocation of a button, an arm poking at a sleeve, a balancing act at a night-time curb while negotiating the dark. Feats of such modest valor, who would suspect them to be exercises in an intimate, fierce discipline, a metaphysics of being relentlessly aware?

Such understated power here, in these tottering dancers who exert stupendous effort on tasks most view as insignificant. Such quiet beauty here, in these, my soft voiced, stiff-limbed people; such resolve masked by each placid face. There is immensity required in growing small, so bent on such unbending grace.

Faith and works go hand in hand

A brother at the temple asked my husband about the name of the product I had referenced in my blog, that I credited with contributing to my husband’s recovery from a debilitating condition. As my sweetheart related their conversation to me, it seems he didn’t give a direct answer.

As I pondered his response I believe the answer can be found in his profound deep faith. As he endured the years of crisis and pain, he was promised in priesthood blessings that he would, in time, be well again . And he has recovered.

Despite our trust in the Lord’s ability to heal, we also believe the Lord has given us the council to use wisdom in all things. He expects us to strive to learn through our own study and take advantage of the things made available to us in our quest for health. I believe our Heavenly Father has provided many things in nature that will bring our bodies into balance. He also provided man with the gifts of intelligence, curiosity and perseverance enabling us to seek to discover and apply. I see it as part of our test… faith without works isn’t always enough.

Do I think Stem Enhance was the only thing we tried that he benefited from? No. I suspect some of the cleanses helped remove toxic chemicals from his body. But I could see a direct correlation between the time of product usage and the reduction and elimination if his debilitating headaches.

Likewise, as I begin to take the product, I will continue to use other protocols that I feel may be beneficial to my holding symptoms at bay. And I will not leave the power of priesthood blessings out of the equation.

Release of stem cells

I changed a page on the top of my blog to “What Worked” relating to a success story in my husband’s health challenge of years gone by. Feel free to read it. As he is experiencing a new challenge, I was pondering how the stem cells are in the bone marrow, I inquired about the possibility of trying the product again, to reverse his newly diagnosed condition.

THE RESPONSE I GOT TO MY INQUIRY WAS:

“Please keep in mind.  Everything in our bodies, from a single nerve cell to the tiniest tissue in an organ is a byproduct of stem cells.  There is nothing that a stem cell cannot reproduce.”

“And keep in mind – our product is not only for people suffering from various conditions.  It is also for people who want more vitality, more resilience, more enjoyment in life.  Their bodies may not have manifested a disease or disorder, but they may be stiff, their bodies may hurt, but they just write it up to “aging.”   The appearance of aging can be altered.  You can add years to your life and gain wisdom, but you don’t have to have aging symptoms!!”

The person also attached a testimonial booklet. I found it encouraging, but no more encouraging than our own personal family experiences. Besides my husband’s previous successful outcome, his oldest brother had seen the change in my husband and inquired, “What did he do?

We explained to him, how it had been explained to us, that the product encouraged a persons own body to release their own stem-cells which would go to the place in the persons own body where they were most needed. As his brother’s heart condition worsened, and medical specialist told him it was time to call his family together, his brother acquired his first bottle of the supplement. His brother said later, “I don’t ‘know’ that it is what made the difference, but I don’t dare not take it.” That brother is now 82 years young.

So now, I bet you are wondering… “If they got such great results… WHY haven’t I tried it, to see if I can document some improvements in my Parkinson’s symptoms?”

The truth? I do not know! But I plan to begin taking the product in January 2020.

I enrolled and placed my first order yesterday. If any person following my blog wold like to learn more about Stem Enhance, I am including a link to their site: https://JSR.cerule.com

I know I didn’t get ill over night, so I don’t expect immediate improvement, but I will report any lessening of symptoms as they come. Thinking positive thoughts.

Gift suggestions please

During the years John and I were ‘professional parents’ we had sixteen special people who, at various times, became one of our family members. We, and our children, have many fond memories which frequently come back to our remembrance. For instance… the first thing Debbie said, to anyone she met, every day of the year, and with great anticipation was… “Birthday’s coming up!!… May 25th!!”

Yesterday was Oct. 25th! And I realized it is just two months till another gift giving occasion arrives. On Christmas, Christians commemorate the gift of God’s Son, by the tradition of giving gifts to those we love. We all love to give gifts, and although some may say they don’t want to receive… I believe, on some level, everyone has a need to receive a gift. It doesn’t need to be wrapped in a package with a pretty bow, to be appreciated. It doesn’t even need to cost a lot to be appreciated… For example, a grandson wrote a poem, in tribute to his grandfather, and framed it as a gift for Father’s Day. It was heartfelt, touching and brought tears to our eyes. (Happy tears)

Still… I’m running short on ideas… With over 30 ‘big people’ and over 24 younger people that I’d like to gift to… Perhaps I can recall some stories from the past that I can share with them? PERHAPS you will have a suggestion you’d like to share with me?

Gifts parkinsons homemade quote

A new word: Festination

Yesterday, I went to the neurologist. He indicated the DatScan report was conclusive, that I had a significant loss of dopamine. He speculated I have been loosing it for at least the last 4 or 5 years. Because of my previous intolerance for the medication, he plans a gradual increase… increasing the dosing to four tablets a day. Then after four weeks starting two tablets at one of the doses. I was pleased to report some lessening of symptoms… he seems to think I will see a lot more improvement.

In reading through his notes, I saw a word I wasn’t familiar with. I learned a new word last night… then I experienced its effects in the wee hours of the morning.

“What is Festination in Parkinson’s?  Parkinsonian gait (or festinating gait, from Latin festinare [to hurry]) is the type of gait exhibited by patients suffering from Parkinson’s disease (PD). This disorder is caused by a deficiency of dopamine in the basal ganglia circuit leading to motor deficits.”

Allow me to set the stage: Due to my Parkinson’s stiffness, I have discovered it is much easier to make a graceful landing on the porcelain throne with a ‘raised’ toilet seat :

Raised Toilet Seat

A couple more challenges to cope with is a sense of urgency which hits me as soon as I sit up in the night and a slowness to initiate movement. First I move to the foot of the bed until my hand find the round bed knob where I pivot, baby stepping between the foot of the bed and our WBV machine until I turn right and have a clean shot into the bathroom. As I clear the bathroom door frame, the urgency has intensified, so I raise my hands to tuck my thumbs into the waistband in anticipation of a speedy lowering… then the festination kicks in! I find myself rushing forward, unable to slow myself or free my thumbs!!

Propelled forward, while striving to turn my anatomy and simultaneously pushing clothing aside, I was spared a fall, as I landed with my head on the toilet paper on its portable magazine rack stand which was supported by the elevated bathtub side…sort of seated on my target.

After discussing my close call, with my sweetheart, he has come up with a plan to rearrange our bedroom, providing me with a much shorter, straighter pathway. I dearly love this man, and appreciate his tender affection and attention to details.

