perceptions – Standing up to Parkinson's

Still true today

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! “
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“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 !”

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 – 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!

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.

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.

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.

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.

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

Why don’t you like me?

The title of this blog post is the name of the poem posted in a discussion group. Zella wrote earlier this week… “I thought my husbands poem might be suitable for Parkinson’s Awareness Day!”

To which LAJ responded… “I thought it was going to about a caregiver who thought their husband didn’t like them anymore, which is what it felt like before I knew what was happening due to the frozen face that seemed to glare at me all the time😟”

WHY DON’T YOU LIKE ME?

“When did it start?” the doctor said “The hate campaign that’s in your head”

It started out with a little thing A parcel neatly tied with string

I couldn’t get the knot undone It really wasn’t too much

The problem very quickly spread A champagne cork encased in lead

Just pull the corner, plastic tag It’s just like opening up a bag

But heat-Sealed cartons won’t comply They tear or shred, I wonder why?

They should open up for me Not stay tight shut. It’s misery

It cooks in minutes on the pack But opening it, I’ve lost the knack

It doesn’t work I can’t get in, This thing is going in the bin.

I’ve stabbed it with a table fork Tempers rise, I cannot talk.

Have all these packs developed hate For me no meals, note the date

But all my efforts are in vain Four broken nails what a pain.

I’ve tried with other simple things 10 pound note develops wings

It floats and flutters then it sighs. I’m out I’m out it loudly cries

It won’t go back without some force All my notes have changed their course

Why do all things hate me so? Why won’t they just go with the flow

Is it old age that treats me thus I can’t go on I’ll make a fuss

Coordination is the key Its making such a fool of me

Filing papers opening mail all tasks that I can fail

It was my mother that I told You take too long, it’s cause you’re old

Parkinson’s is such a sod For my old back another rod

I’d change the duvet if I could My fingers seem to change to wood

The pillowcase will not comply It really makes me want to cry

Zips and buttons stubbornly Are never like they used to be

Sometimes it really makes me laugh I seem not whole I’m cut in half

The half that works has disappeared The other half behaves quite weird.

It moves and shakes all on its own It will not do the things It’s shown

My life is turning into farce And Parkinson’s can kiss my arse

Written by…. John Smith