Category: strategies

Still true today

đź’ś I copied the following out of the villages Parkinson support Group Newsletter.

MLK DAY January 16th, 2023    
We often look to the “Parkinson Experts” for inspiration.  But perhaps we can find inspiration in the words of the late Martin Luther King, Jr which interestingly enough can apply to our Parkinson’s journey! “
“

“Flexibility, persistence, and re-evaluatiing the name of the game.  If you can’t do one thing (perhaps something you have ALWAYS done) then find something you CAN DO – and find a way “to keep moving forward !”

Secret Code

What I don’t plan to keep secret is how I feel about LuminAloe. I believe it is improving my health and quality of life at the cellular level. Rather than writing out all the ways I see my life being impacted, I’d like to refer you to the Transparency page, at the top of each post, where I update my progress. So to see the improvements, you would need to scroll back and read it in reverse from …………….. to …………….. or look for the dates of each entry.

Opportunity to participate

I f You (or someone you know) have a speech impediment that makes it difficult to be understood, THIS is FOR YOU

Systems don’t always work as well for people with atypical speech. By personalizing its speech recognition to the individual, Project Relate seeks to improve everyday life for people with speech impairments.

Project Relate is a continuation of years of research from both Google’s Speech and Research teams, made possible by over a million speech samples recorded by over a thousand individuals. We welcome new trusted testers to experience the app and provide feedback. Express interest at g.co/ProjectRelate.

(I have cut and pasted the form, so you can seethe qualifications required to participate )

Google Project Relate Interest Form


You are signing up to be included in a beta research app release of Google’s Project Relate.

Project Relate can be trained to understand your specific speech, if you provide it with examples of you talking. Project Relate needs at least 500 phrases to be trained; most people need 1-2 hours, which can be spread over multiple sessions, to complete their 500 phrases. You will need an Android phone (e.g. Pixel, Samsung, OnePlus) running Android OS 8 or later to be able to use the app.

We value your thoughts and feedback. When you submit your feedback to Google, we will determine your eligibility (based on certain compliance and legal considerations) for either a cash or other non-cash incentive, up to $60 or local currency equivalent.

IMPORTANT: If you’re filling out this form on behalf of someone else, please ensure you have their permission to do so.

The purpose of this questionnaire is to verify your eligibility to download and use Google’s Project Relate app. The data you provide in the app and this form may be used to assist Google to design, research, develop, build, and improve the accessibility of its current and future products and services related to speech technologies. Information you provide in this questionnaire may be combined with other information and data that you chose to provide during the data collection, if you are selected to participate.

Questions? Write us anytime at project-relate@google.com

  • Strangers or people I just met find it difficult to understand my speech (and not just because of an accent).
  • I am 18 years of age or over
  • I have access to an Android mobile device, running Android OS 8 or later, to download the Relate app
  • I understand I need to record at least 500 phrases (which can take anywhere between 30 to 90 minutes) in order to train Project Relate to understand me and that new features of the app that are unlocked by these recordings may take a few days to receive.
  • I understand that even after recording 500 phrases, Project Relate may still not understand me perfectly.
  • I understand I will need to record each phrase word-for-word in order to teach Relate to understand me. If I don’t say exactly what is written, Relate may not work as well. If I make a mistake, I can re-record the prompt.
  • I understand that the phrases I record will also be used to help improve Google’s speech technologies and the products and services that use them.
  • I understand that Project Relate is for English speakers only at this time.

You must confirm agreement with all the listed criteria to participate

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 â€“ 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

Right side tip

I have addressed choking before, but I do not think I have addressed taking pills. When I had a swallow test, they said the flap intended to close off the airway passage from the esophagus doesn’t get the signal in time to close quickly enough. The technicians were surprised I wasn’t coughing. I told them I use applesauce or yogurt to swallow pills… (Something I learned from my father, as he delt with choking.) They told me to use a straw, when I drink fluids. I do not know if the straw slows the liquid enough to let the signal get to my throat in time, or if because putting your head forward and down when sucking is also very helpful. I put the LuminAloe into Almond milk, which makes it thicker than traditional milk and using a straw helps the capsules float to the back of my throat so I trade off, because I don’t want to begin to hate applesauce like my father did.

The following headline captured my attention on a Parkinson’s chat that I follow: Scientists Reveal The Best Way To Swallow Pills. Thai typed:

“Four postures were tested by the team. Taking tablets while resting on the right side was by far the most effective, sending pills into the deepest part of the stomach and achieving a dissolution rate that was 2.3 times quicker than even an upright posture. The worst was lying on the left side. The team was astounded to discover that if a tablet dissolves in 10 minutes on the right side, it may take up to 23 minutes in an upright posture and over 100 minutes while laying on the left side.”

After a couple queries from, other participants I think RebTar said it best……

“I think you have to be hydrated, take the pill upright, and lie down when it has reached the stomach?”

Okay, it really wasn’t telling us how to swallow the tablet or capsule, but I still thought it was interesting.

here is a link to the article https://scitechdaily.com/relieve-headaches-faster-scientists-reveal-the-best-way-to-swallow-pills/

Oh, my!!

One of my daughters called to ask me for links to group chats, or blogs for caregivers of people with Parkinson’s. I’m not sure if she was looking for a way to let people know what she had recently learned, or if she was looking for support. But what follows is a message from her… She works in a dental office.

“If your mom knows anyone with a DBS (Deep Brain Stimulation) they should know it’s important to let their dental professionals know. “

“I didn’t know these things until my mom’s procedure No panel radiographs or MRI/CT (the image that goes around the head) A full set of individual radiographs is okay. No cords which produce power (drills, ultrasonic instruments, etc) should never cross the patients neck or chest. All of those mentioned can increase the frequency of the DBS signal to the brain. Luckily I’ve always accessed my cords from under the dental chair and never draped my cords on my patients. The cords should not come close to the neck (superficial cords run from the stimulator in the chest to the rods in the brain) “

Since I do not have DBS (deep brain stimulation), I do not know ; but I would presume the doctors give the information to the patient at the time when they sign up for the procedure. Perhaps the information needs to be taught to the care givers… or even inform the dentists. But it would still be the responsibility of the PwP or their caregiver to tell the dentist, because it isn’t obvious that a person has even received a DBS.