Mindset

I am excited about some research news that was shared at a BYU Forum yesterday. Please take time to listen to this facinating discussion about the scientific discoveries of some substances that are now going to human testing, looking very promissing for reversing the protein folding in the brains of Patients with ALS, Parkinsons and alzymers and other neurological imparements.

https://www.youtube.com/watch?app=desktop&v=JkfuvwqcEcw

My researching Dr. Paul Alan Cox brought me to a Ted presentation at:

https://brainchemistrylabs.org on the ‘about’ page. Here is a quote from the page.: “We have only one wish at the Institute for Ethnomedicine: to discover new treatments for serious illnesses. This focus has led to the discovery of two promising new drugs for ALS, Alzheimer’s, Parkinson’s and other tangle diseases.”

I am excited because of the inclusion of some of the same ingredients in our LuminAloe formula as mentioned in the Forum titled “Exploring Nature’s Curiosity Cabinet”

From the website..https://ascendsciences.net Organic Yam Powder

(Dioscorea Villosa) powder – is naturally high in the chemical diosgenin; which in a laboratory can be converted into estrogen.  Wild Yam is considered a phytoestrogen food, meaning it comes from plants used to produce estrogen therapy and relief of menstrual-related conditions.

The diosgenin in Wild Yam has been studied extensively and research suggests it supports healthy blood sugar levels.  Other respected studies further suggest it is also antiproliferative – which means it may help keep unhealthy or DNA-damaged cells in check.   Yet another study suggests diosgenin may support healthy HDL production and help stifle unhealthy LDL production.  

Traditionally, Wild Yam was used as an antispasmodic for colic in babies and some people actually call it colic root.  However, most people use it due to the DHEA (dehydroepiandrosterone) it contains.”

The Iceberg then Poof

I’m one of the lucky ones… I do not generally exhibit resting tremors. And although the traditional c/l doesn’t seem to help me, The agonist does…

We just got home from spending our morning at the Norman Fixel Institute for neurology, where I saw a speech therapist, occupational therapist, a physical therapist and then the Movement Disorder Specialist.

I hadn’t seen any of them for six months.. And across the board, all four of the specialists who saw me, said there was much improvement in my functioning over the last visit. The Movement Specialist went so far as to say… “There are different forms of Parkinson’s which progress at different rates. You must have a very mild case. You are looking GREAT! I don’t think we will need to see you for another year.”

I was gracious and thanked her for her time… But I was thinking, this is going to be an awesome testimony of the benefits of the ‘more comprehensive nutrition’ found in the LuminAloe. She is aware of my taking the LuminAloe, but not sold on it, yet. I figure next time I see her, in a year, I should have also had the benefits of the frequencies provided by the Currie… and I will be able to demonstrate the benefits of really good nutrition in a most convincing way. So Poof… my symptoms are going away!

CUE

This is a link to an introduction of the Cue1… a non invasive tool that I signed up to receive updates on.

https://www.youtube.com/watch?v=IHzxntHblG4

………………………This is a chat entry by a gentleman in the UK

“Ok… so… I went on the waiting list in September 2020 and received my CUE1 in early February just gone.”

“The first couple of days I didn’t really notice much difference, then all of a sudden it dawned on me that my balance had improved a lot and that stiffness and slowness were improved too. I don’t think it does a lot for my tremor but could be wrong. Everyone is different so don’t be put off by this.”

“If you’ve got questions, email the team at Charco, they are lovely and very approachable.”

………………………..and this posted in the chat by Deedee777

I live in the United States, and this is the response that I received today from Charco Neurotech (Team Charco ) regarding their CUE1 availability for customers in the USA:

“We are offering the CUE1 to those on our UK waiting list. As a medical device company we are unable to make the CUE1 available to those in the US until we have been approved by the FDA. ” Team Charco,

Go to their website, for detailed information on CUE1, and to sign up to their Waiting List: Their website is: charconeurotech.com/

I’ll keep you posted.

Sue

To Correct my Posture

The Feldenkrais Method® of somatic education uses gentle movement and directed attention to help people learn new and more effective ways of living the life they want. You can increase your ease and range of motion, improve your flexibility and coordination, and rediscover your innate capacity for graceful, efficient movement. Since how you move is how you move through life, these improvements will often enhance your thinking, emotional regulation, and problem-solving capabilities…

I per chance ran across this unique form of Yoga. I have posted 4 videos showing three different presenters demonstrating exercises for posture alignment, freeing neck and shoulder pain, healing your knees & foot and ankle stability. Do your own search and see if any of their approaches work for you.

This an exercise a person can do, laying in bed.

Covering My Bases

I suspect it is too late to help the particular patient, but this perspective might be beneficial to some of my readers.

The scenario: Her husband didn’t pick his foot up high enough when approaching the curb. which resulted in a fall on cement and a broken bone. He is hospitalized. After giving him a swallowing test, the doctor recommended the feeding tube to increase his food consumption, to give him the strength needed to go through therapy

A fellow PwP posted the following in a chat with the caregiver who was seeking a second opinion about the Dr’s recommendation to give her husband a feeding tube (placed through the skin into the stomach) to prevent aspirational pneumonia.

………………………………………..

” MDs never speak of potential adverse effects of proposed treatments. In the case of a feeding tube: stanfordhealthcare.org/medi…

“Possible complications associated with a feeding tube include:

• Constipation • Dehydration • Diarrhea • Skin Issues (around the site of your tube)

• Unintentional tears in your intestines (perforation)

• Infection in your abdomen (peritonitis)

• Problems with the feeding tube such as blockages (obstruction) and involuntary movement (displacement)”

incidence of complications is alleged to be low but what is reality? Here is one study of the effect of probiotics on infection. This is the first study I pulled up: mdpi.com/2072-6643/13/2/391

“Differences between the two groups in number of infections (25% intervention group vs. 44% controls), antibiotic therapies (12% vs. 37%)” This was only over a period of 60 days. The number is shockingly high. Trading aspiration pneumonia for peritonitis is not a good trade. Now let us look at prevention of aspiration pneumonia:

General search: scholar.google.com/scholar?…

Prevention of aspiration pneumonia (AP) with oral care: sciencedirect.com/science/a…

“Abstract

AP is a major cause of morbidity and mortality in elderly patients, especially frail elderly patients. The aim of this article is to review effect of oral care, including oral hygiene and improvement of oral function, on the prevention of AP among elderly people in hospitals and nursing homes. There is now a substantial body of work studying the effect of oral care on the prevention of respiratory diseases. Oral hygiene, consisting of oral decontamination and mechanical cleaning by dental professionals, has resulted in significant clinical effects (decreased incidence of pneumonia and decreased mortality from respiratory diseases) in clinical randomized trials. Moreover, studies examining oral colonization by pneumonia pathogens have shown the effect of oral hygiene on eliminating these pathogens. In addition, swallowing training has been shown to improve the movement and function of swallowing-related muscles, also resulting in decreased incidence of pneumonia. These findings support the contention that oral care is effective in the prevention of AP.”

Increased visits to the dental hygienist sure beats a feeding tube.”

…………………………………………………………………

My understanding is, when the PwP has his/her swallowing affected, the signal to close the opening into the lungs doesn’t react fast enough to get fully closed. Usually I strangle 0n clear liquids and am able to cough it back out. Occasionally a crumb of toast or some such thing will get in the wrong place triggering a serious coughing fit. So far, I am okay.

When I learned about aspirational pneumonia I was proactive and received a pneumonia vaccination. I have become very mindful about flossing and brushing twice a day. And I get a professional cleaning twice a year.

Trying to cover all my bases.

Sue

Brain changes

I have been going to physical therapy this month. I am in a program designed to help people with Parkinson’s retrain the brain to help us with balance and prevent falls. I think I am a slow learner. There are so many different aspects to it. how to turn, how to keep the feet from crossing over… or from bringing feet too close together. My therapist is constantly reminding me: ‘shoulders back’, ‘don’t drag your foot’, ‘look straight ahead’, ‘stand up straight’, ‘think big’. ‘take bigger steps’, ‘pick up your foot higher’, etc…

Yesterday was my tenth session, so they had me retake the test that I received at intake. They said I had improved some on my times, but I have a long way to go. They showed me a before treatment and after therapy for another patient, and my honest input was “He looks like he is walking wearing a wet diaper.” I am hoping, when I see my after therapy video, my gait isn’t quite as exaggerated as his was. In my ‘before treatment’ video I was putting one foot directly in front of the other and very awkward when turning around to walk back I have five more sessions scheduled in July… which should be the end of the BIG therapy program. I do not know if they will extend it into August. They send me home with exercises to do at home as well.

I liked the explanation for our loss of balance that I copied from a blog:

Difficulties with balance and walking are linked to the brain changes that take place with PD. For people who don’t have PD, balance is automatic, a reflex. But Parkinson’s Disease affects the basal ganglia (a part of the brain essential to balance). To compensate, the brain assigns another brain area — an area used for thinking — to take over. The thinking part of the brain, mainly the frontal cortex, can’t control balance automatically. The result: for many people with PD, balance becomes less automatic.

https://www.parkinson.org/blog/research/Walking-with-Parkinsons-Freezing-Balance-and-Falls

Worth Trying

My holistic GP keeps a close eye on our lab results; he has me on 5,000iu of Vitamin D per day, but he has John on 10,000iu of vitamin D per day. I suspect John’s medication for his factor5 blood clotting issues may be why he needs so much.

Marisa Wexler wrote the following discussion in the Parkinson’s News Today newsletter. Just passing it on in case it rings logical to any one who reads this.

p.s. I have no idea how the serum 25, compares with the capsules of vitamin D that we take.

High levels linked to fewer cognitive problems.

“People with Parkinson’s disease who have higher levels of vitamin D in their blood are less likely to experience cognitive impairment or dementia, a new study suggests.

The results provide support for future research to test whether vitamin D supplements could reduce the risk of cognitive problems for Parkinson’s patients.

The study, “Correlation between serum 25(OH)D and cognitive impairment in Parkinson’s disease,” was published in the Journal of Clinical Neuroscience.

Vitamin D plays a number of important roles, including to help regulate calcium levels and modulate nervous system activity. Prior research has linked low levels to an increased risk of falls, depression, and sleep problems in people with Parkinson’s.

Researchers in China analyzed possible connections between cognitive outcomes and levels of serum 25(OH)D, a form of the vitamin that’s easily detectable in blood.

The study enrolled 112 people with Parkinson’s at the Affiliated Hospital of Xuzhou Medical University, China. A group of 70 people with no known health problems were included as controls. In both groups, slightly more than half the participants were male, and the average age was in the mid-60s.

Cognition was assessed with the Montreal cognitive assessment (MoCA), which is used to test for dementia. Based on standard criteria, Parkinson’s patients were divided into those with normal cognition, those with mild cognitive impairment (MCI), and those with Parkinson’s disease dementia (PDD).

“This is one of the few studies investigating the association between serum 25(OH)D and cognitive impairment in Chinese [Parkinson’s] patients,” the researchers wrote.

They found that average vitamin D levels were significantly higher in the healthy controls than the Parkinson’s patients: 56.54 vs. 45.86 nanomoles per liter (nmol/L). Among the Parkinson’s patients, average levels were highest in those with normal cognition (53.67 nmol/L), followed by those with MCI (44.57 nmol/L) and then PDD (36.53 nmol/L).

Higher levels of serum 25(OH)D were also significantly associated with better MoCA scores. This association remained significant even after statistical adjustments for age, gender, body mass index (BMI), years of education, and sunlight exposure.

Researchers found that assessing vitamin D levels could be used to accurately predict cognitive impairment risks. These results suggest that “low serum 25(OH)D may be involved in the occurrence and development of cognitive impairment in [Parkinson’s] patients,” the researchers wrote.

The scientists did emphasize that, because of the way the study was designed, it’s not possible to make any definitive conclusions about cause and effect with regard to vitamin D and cognition in Parkinson’s. They said further research is needed to see whether supplements may protect against cognitive problems in Parkinson’s.

Although efficacy remains to be proven, “long-term vitamin D supplementation carries a low risk and many possible benefits for patients,” the researchers concluded. “Therefore, evaluating vitamin D for patients with [Parkinson’s] and supplementing vitamin D for deficient patients are worth trying.”

Of c0urse, the use of any supplement should be discussed with your doctor, before you try it.

Sue

TTFD

I refer you to my post on 2/28/2020

After reading this post by Gcf51 in a chat group… HealthUnlocked I am changing the amount of Thiamine HCL I take each day from 4/day to 1/day AND I am going to increase the amount of Allithiamine I take daily. I have done this for the past two days and I am feeling really good. I’ll keep you updated.

He said: “I have negative feelings about mega dosing Thiamin HCL (B1), {Just to hope that some of the Thiamin gets in your brain cells (100mg is 6,667% of the RDA, It is suggested that we are suppose to take 200 times that and, the 200mg I take makes no difference)}. According to RDA 25mg of B1 is more than 2000% of what you need to function.”

“Thiamine {tetrahydrofurfury disulfide (TTFD/ allithiamine), on the other hand has been shown to increase B1 in brain cells and I felt the difference in one 50mg dose. The TFD component which is shed when entering your cells does require methylation, but I take way more than 50mg of methyl donors. So, I ask: How is the HCL component you take disposed of? I am not a doctor: It’s probably just, a little additional stomach acid.”

“TTFD is a form of thiamine that is water-soluble, and much more difficult to find in vitamin shops. Brand names include Lipothiamine, Allithiamane, Adventan, Alinamin-F, Benlipoid, Bevitol Lipophil, Judolor. TTFD comes in 50 mg capsules. And the primary side effect is you smell like garlic after taking it. (Well I haven’t smelled my breath) nootropicsexpert.com/vitami…

“And, Thiamine tetrahydrofurfuryl disulfide (TTFD) is the synthetic counterpart of allithiamine, occurring naturally in garlic. Allithiamine was discovered in Japan in 1951… its metabolic effect was (is) much more powerful than the thiamine (assume they mean HCL and wonder how much more powerful). pubmed.ncbi.nlm.nih.gov/153….”

“excellent Video on TTFD  healthunlocked.com/cure-par… ‘ ***If it increases dopamine in brain is it a cure????”

“You may ask, what difference: It’s nice to be able to brush my teeth without my hand doing something crazy. And yes, I am still taking the 200 mg of Thiamin HCL.”

“at some of the Thiamin gets in your brain cells (100mg is 6,667% of the RDA, It is suggested that we are suppose to take 200 times that and, the 200mg I take makes no difference)}. According to RDA 25mg of B1 is more than 2000% of what you need to function.”

“Thiamine {tetrahydrofurfury disulfide (TTFD/ allithiamine), on the other hand has been shown to increase B1 in brain cells and I felt the difference in one 50mg dose. The TFD component which is shed when entering your cells does require methylation, but I take way more than 50mg of methyl donors. So, I ask: How is the HCL component you take disposed of? I am not a doctor: It’s probably just, a little additional stomach acid.”

:TTFD is a form of thiamine that is water-soluble, and much more difficult to find in vitamin shops. Brand names include Lipothiamine, Allithiamane, Adventan, Alinamin-F, Benlipoid, Bevitol Lipophil, Judolor. TTFD comes in 50 mg capsules. And the primary side effect is you smell like garlic after taking it. (Well I haven’t smelled my breath) nootropicsexpert.com/vitami…

“And, Thiamine tetrahydrofurfuryl disulfide (TTFD) is the synthetic counterpart of allithiamine, occurring naturally in garlic. Allithiamine was discovered in Japan in 1951… its metabolic effect was (is) much more powerful than the thiamine (assume they mean HCL and wonder how much more powerful). pubmed.ncbi.nlm.nih.gov/153….”


“excellent Video on TTFD (doesn’t work as I expected – I had to page cked.com/cure-par… ***If it increases dopamine in brain is it a cure????”

“You may ask, what difference: It’s nice to be able to brush my teeth without my hand doing something crazy. And yes, I am still taking the 200 mg of Thiamin HCL.”

No Silver Bullet

As I have previously indicated, I belong to a forum where people with PD ask questions and share experiences. Recently Eliza-Jane asked:

‘I have lost my voice to PD. I saw a ENT Specialist who advised me that my vocal chords weren’t closing properly. She suggested having a filler injected. Has anyone had this done?’

In reviewing the responses, I followed the rabbit hole to discover a youtube group…. No Silver Bullet 4 PD And this very informative Video. I learned quite a bit from viewing it.

Always striving to have wisdom to know how to implement the knowkledge I obtain.

Sue