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

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!

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.

Take it with you,

Being proactive, when I learned about the Aware in Care Kit, I requested one. And received it Feb of 2019. Thankfully, I have not needed to go to the hospital since acquiring it, but I carry a change of underwear, and some light weight knee pants and extra incontinence pads along with the other things included in the bag. with me whenever I am on an outing… along with wearing the alert bracelet. Having the bag stocked for such emergencies has saved me from embarrassing experiences on at least three different occasions

The link is included below, for all proactive Parkies. Additionally, there are links to download the action plan, the medical alert card, medication card, fact sheet and reminder slip,,, in case you need any of them prior to the arrival of your bag. This is from the web:

“The Parkinson’s Foundation launched the Aware in Care campaign in 2011 to help people with Parkinson’s disease (PD) get the best care possible during a hospital stay. According to a recent study, three out of four people with Parkinson’s do not receive medications on time when staying in the hospital. With more frequent hospital visits and a high sensitivity to the timing and dosing of PD medications, people with Parkinson’s face great risks in the hospital.”

“To protect, prepare and empower people with Parkinson’s before, during and after a hospital visit, we developed the free Aware in Care kit with tools and information to share with hospital staff during a planned or emergency hospital visit.”

“Aware in Care kits can be requested from your local Parkinson’s Foundation Chapter or Center of Excellence. If you do not live in an area with a Chapter or center, you can order a kit online.”

Tender Mercies

I told you about my suggesting someone gift me a cane (Dec. 2019), my helmet hat, (Feb 2021), and the doctor telling me to get a walker. (7/ 2021 in Transparency page)

I drug my feet for a while, but when John took me to look at walkers, I decided If I was going to get one I wanted one with large wheels, because I could see me using it out in the garden, and I felt small wheels would get stopped by fairly small rocks. And as I was checking various designs with seats… a must, because the doctor said, if I had a walker, I could sit down if I became too tired. Then I saw it… the Cadillacs of walkers… I don’t even see a brand name on it, but It has risers with arm braces with hand brakes. The design is especially good for me, because posture becomes a problem with PwP, and It encourages me to stand up straighter instead of leaning over and looking down at my feet like I have seen many walker users do.

I used it some, to weed the raised garden boxes, while sitting on it. but it was just sitting tucked away in the house most of the time, until we needed to attend a funeral in Utah. Now, I recognize having the walker as a tender mercy. We can put the computer case in the bag that is attached onto the front of the walker and hang my bag (to go under the seat) and John’s C-Pap machine… both over the hand grips. Then, I can walk as fast as I want to… John tows the check on bag on wheels with one hand and hangs onto one of the hand brakes to help me slow down when we go down a grade. It is so nice going through the airport without having to carry any baggage.

When family came to Florida for a visit, we went with them to spend a day at NASA. The walker again came in as a tender mercy, enabling me to sit down, and being escorted into special seating along with all accompanying family members.

I have been feeling so well we decided to fly to Utah for Education Week at BYU.

I again used the walker as we made it through the airport terminals. Such a blessing. Then, again at education week, the classes are located in various buildings all over Each class was 55 minutes long, and then we had 25 minutes to get to the next class. There are in excess of 80 presenters to choose from, and when you find a presenter you like, they have three or four more days of information to share. That is what happened to us, we marked our plan for the next day. The fabulous teacher was in a building very far from the other classes we were most interested in. To get there wasn’t hard on me because much of it was down hill. But the return hike was going up a long up hill paved path that spiraled upward. John, bless his heart, had me sit down on the walker seat and he pushed me the rest of the way up the hill. Another tender mercy.

I had packed my HurryCane and I’m so glad I did. We were being hosted by our Son who has a guest room in his Payson home. I have been using the cane at home when I get up in the night, just for security… so I don’t festinate. The bed in the room is an awesome select comfort bed, but it is really high compared to our bed at home. So, as I was attempting to get off of the bed in the middle of the night (for a potty break) I fell off of the bed! But there was a tender mercy, my right hand fell squarely onto the handle of the HurryCane enabling me to break the fall.

Encouraged by our successful visit in Utah, we were home only 6 days when we flew off to Missouri to my Sister’s newly opened Bed N Breakfast.. It is located in a small community , Trenton, a little bit over an hour’s drive from the Kansas City airport. We visited with some of her other guests and we learned they had come to do research for a book they are writing. My sister was able to get them information for two tours with the Amish people… one which included a horse and buggy ride. During our week visit, we were able to visit 5 sites from Church history that we missed seeing as we took our 50th anniversary journey across the country. The walker was again very beneficial to me as we traversed the airports. And the cane was very helpful within her home. Tender mercies abound.

P.S. For those in my local Parkinson’s group: This could explain my month long absence from the group. I plan to be back next week (the 14th), but I have a dentist appointment tomorrow at a conflicting time.

Things in your life you wish to protect

 

I responded to the email from the Davis Phinney Foundation… and was so impressed by the results I got… I simply had to share.

They typed………………

“Here at the Davis Phinney Foundation, we are making the most of the support our community continues to provide. We wouldn’t be able to deliver our education, community outreach, and quality of life programs without you. In thanks we want to help you accomplish an essential task during this special month: creating or updating your will, trust or estate plans to protect what’s important to you.”

“August marks National Make-A-Will Month, giving you a special opportunity to think about the things in your life you wish to protect now and forever. Thanks to our partnership with FreeWill, hundreds of members of our community have completed their wills. You can join them by starting or updating your plans with the free online estate planning tool that makes it easy to update and complete your legal will or trust, all at no cost.”

Davis Phinney Foundation partnered with FreeWill to allow you to create your legacy in 20 minutes and ensure peace of mind and security for you and your loved ones.

If you don’t have time to complete filling out the information now, I encourage each of you to go to the website and start the process… at  https://wwwfreewill.com/  It has a person add a little information and then click on save.  Once you have saved it, your email is the login to re-access it.  The first time you attempt to log back in it gives you a place to set your password. They encouraged us to tell as many people about this tool as we’d like to.  Once you have gone through the program, saving as you go, you can go back through and edit  or correct.

Ours were pretty simple… and the final document that it produced with all the legaleaze and lines for signatures and notary’s signing and verifying was 15 pages.  for those with under aged children, you would have more to complete, indicating guardianship choices, etc.  so probably even more than 15 pages.’

Another cool thing about it is. your account is online and you can simply update it, if you have an address change, add a member to the family, or any number of decision changes. Then reprint it, get it notarized and destroy the earlier version.

Not for Everyone

A sweet person on a group chat asked a question: “How do you make the transition to a nursing home?

I personally don’t think I need to worry about a nursing home to the end of my life, but things do happen. My mother promised her mother she would never put her into a nursing home… But after my mother had a disabling stroke, and she was total care for my father, he had no choice but to put his mother-in-law, Lola into a home. It was the best thing that could have happened, for Lola. She met other ladies she had things incommon with. they would sit together and knit, they watched the same soap operas. She was as happy as a duck in a puddle.

So, with that knowledge…I wanted to share some thoughts gleaned from the chat: and advice that I have put in bold.

At some point your relatives may want to settle you into a nursing home. Here are some of my ideas based on shared experiences. Can you think of more ideas?
What are the advantages of moving into a nursing home?
1. You won’t have to cook your own meals any more. Granted, institutional food is not as healthy or natural as what you might fix for yourself, but normally the meals & snacks are created by professional dietician and are balanced & varied.
2. You won’t have to clean house.
3. You won’t have to do laundry.
4. You will have physical therapy available.
5. You will have activities available.
6. You won’t have to remember when to take your meds.
This may seem like not worth the price of giving up your freedom, but in many ways it will give you more freedom to write, color, listen to music, get on the internet, look out the window, and be yourself.
Before you go, be sure to pack your activities
Additionally, be sure to mark your name on everything clearly with a permanent or laundry marker. Get a silver or gold marker to mark black things. Carve your name in some things with a knife tip, engraving tool or drimel, before you mark it; cellphone, chargers, laptop.
1. Your cellphone & charger.
2. Your laptop. (Check to make sure you will have internet access.)
3. Your coloring books & colors.
4. Your music & something to play it on – headphones or earbuds are best.
5. Address &/or phone books. If you have time, program them into the contacts in your smart phone or take a picture & save it on your laptop. Be sure to save it on Cloud or Google Drive so you will still have it if something happens to your device.
6. A warm coat, hat, muffler (scarf) & gloves in case you get to (or need to) go out in colder weather.
7. Lighter outer wear including a raincoat & rain hat for cool but not cold weather.
8. A week’s worth of warm clothes, spring or fall clothes, and summer clothes.
9. PJ’s or nightgown 3 or 3 & bathrobe & slippers – 2 each.
10. A good grabber for reaching things.
11. Paper & pens & pencils & pencil sharpener.
12. A small safe, hopefully with a setable combination lock, not a key. Set the combination to a number you can easily remember.
Things you will Not need:
1. Furniture
2. Knick knacks
These may be hard for you to leave someday. Begin to eliminate what you can,. It helps to have pictures of favorite items. It also helps to bequeath them to a descendant who will value them. If not, sell them on Craig’s list & at least you will have the money for them.
Speaking of money, nursing homes are expensive. They often take the money from the sale of your home or property, so put the property in a relative’s name first and set up a bank account with a relative that does not have your name on it.
Pets – many nursing homes will allow 1 pet if you feed it and take care of letting it out to do its job yourself.