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

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.

I am pleased

I am pleased to alert you to a new book published by some friends of mine. We met, because of the Parkinson’s group in the villiages. John and I attended one of their seminars and deffinitley learned some valuable information which has already been of great worth. I recommend it to both caregivers and PD warriors. Sue

A new book, “Our Parkinson’s Disease Instruction Manual: How to have a good life while coexisting with Parkinson’s disease” is now available at Amazon.com. It can be purchased as a digital download or as an 8 ½ x 10 inch printed book. The digital version can be read on a Kindle, tablet, computer, or smartphone. The digital version costs $4.95 or, if you have a Kindle Unlimited subscription, there is no charge. The printed version costs $ 11.95 plus tax.  Go to Amazon.com and search for “Our Parkinson’s disease Instruction Manual”.

Authors are fellow Villagers Edmund Smith and Jane Masterson. They have 25-years of experience with Parkinson’s disease and are frequent speakers in The Villages and other places where they give a seminar entitled “Ideas for Living Well with Parkinson’s Disease”.

The book covers the following subjects in 24-chapters: How to get great medical care, Learning from others, Exercise, Drugs, Electronic gadgets, Tricks to unfreeze, Speaking loudly and clearly, Making the home PD friendly, The bathroom, The bedroom, Urinary incontinence, Keeping the caregiver healthy, Assist devices, Increasing your mobility, Lift assist, Preparing for a visit to the hospital, Inpatient rehabilitation, Driving, Flying, Vacationing, Parkinson’s and pets. The book includes thirty-five photographs and twenty-five Internet links.

Assistive Software

I thought this looked very cool. So thought I’d share it with you who might have hand tremors which make using the computer difficult.

Go steady with your mouse again! The SteadyMouse Project

Steady Mouse

SteadyMouse is assistive software, designed from the ground up to be your fierce ally against Essential Tremor and the variants that often accompany Parkinson’s disease and Multiple Sclerosis

By detecting and removing shaking motion before it reaches your cursor, and by blocking accidental clicks, the entire mouse experience goes from a chaotic battle to an enjoyable reality.

  • Anti-tremor filtering to remove shaking motion
  • Automatic blocking of unintentional mouse clicks
  • A unique Icon Targeting System to snap your cursor to where it was trying to go with the tap of a button
  • An easy global on/off toggle via the Num-Lock key
  • Productivity boosted to orbit

Eyes as diagnostic tools for PD?

Yesterday, John & I enjoyed a lunch with two other Parkies and their spouse/ caregivers. Ed & Jane have put together a slide show presentation giving hints and tips for living with Parkinsons. I looking forward to attending the discussion. They are currently writing a book telling about their Journey. Jane had early onset PD… so the illness progresses more slowly, but after 30 years She now has two Deep Brain Stimulators in her brain and is in a wheelchair. They recommended the place in Gainsville I had gone to once. And Rose, who puts together a weekly newsletter for the parkinson’s group, gave me the name of the Movement Disorder Specialist her husband, John, sees and they recommended. I called to see if I could get an apppointment with her. But was told that they couldn’t allow me to switch doctors after I’ve already seen one. But after further discussion, she said she would pursue my request, so I am hopeful.

And now I know what I want for my birthday. After the ladies shared their experience with UTI’s… Something I recently completed receiving a round of antibiotics for… Jane said, The doctor said the best way to quit having the problem was to get a good Bidet. One that doesnt have plastic valves.. make sure the hardware is metal and it has a heater for the water. The one they got also has a nightlight built into it. They said expect to pay at least $300. for a good one, They run as high as $900. + or as cheep as $39.

Jane, like I, experiences eye challenges. She has to use a VERY Large font to enable her to type. They recommended I go see a neuro-ophthalmologist. I pointed out, there are none in the Lady Lake or The Villages. They knew of a good one… in Gainsville, of course.

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As I was brousing the Parkinson’s News Today, I saw this article:


 Eyes’ Pupils May Be Window Into Assessing Disease Stag

The response of the eyes’ pupils — the black circle in the center of the eye  that allows light to enter — seems to change according to the progression of Parkinson’s disease, a recent study has found.

The results suggest that measuring the pupils’ response to stimuli could become a noninvasive way to measure disease progression.

The study, “Analysis of pupillometer results according to disease stage in patients with Parkinson’s disease,” was published in Nature: Scientific Reports.

The pupil is the hole situated in the center of the iris (the colored part of the eye) that allows light to enter the retina, a lining of tissue at the back of the eye that is sensitive to light.

The iris is a contractile structure, and expands or dilates depending on the amount of light available. In this way it regulates the amount of light by controlling the size of the pupil, functioning like a photography camera’s aperture. This movement is known as the pupil light reflex (PLR) and plays a key role in determining the eye’s image quality and response to light.

A team of researchers in South Korea looked at the PLR using a pupillometer, an instrument used to measure pupil response to light. This reflex allows one to assess the functionality of the autonomic nervous system — the part of the body that controls involuntary actions such as digestion and heartbeat.

The sympathetic system activates several bodily functions when an imminent threat or major stressor is perceived, while the parasympathetic system works to calm the body afterward. Measuring the balance between these two systems can be a useful test for patients with neurological disorders.

In this study, patients with Parkinson’s were divided into early or late stages based on the Hoehn and Yahr scale (HY scale). Among the 132 patients, 100 were early stage (HY stages 1–2) and 32 were late stage (HY stages 3–5). After matching both groups for age and sex (to compensate for the effect of age on pupil light reflex), only 64 patients remained in the early stage group.

Those with late stage disease had longer disease duration and higher levodopa equivalent daily doses, meaning they were on higher doses of medications to treat their disease.

The study found there was a significant difference between the two groups in terms of pupil constriction velocity (the speed at which the pupil contracts when exposed to light) and maximum constriction velocity, which were significantly slower in the late-stage group.

“Constriction velocity and maximum constriction velocity are parameters involving the parasympathetic system, and changes in these parameters suggest that in patients with PD [Parkinson’s disease], the abnormalities of the PLR are mainly caused by parasympathetic autonomic dysfunction,” the researchers wrote.

There was not a significant difference in the two groups when it came to pupil dilation velocity (how quickly the pupil dilates when light is removed), baseline pupil size, minimum pupil diameter, and constriction latency, the delay in pupil constriction following light stimulation — all parameters that involve the sympathetic system.

The researchers noted that pupillary dilation response may have not been affected because the medications that the patients were taking may have affected the sympathetic nervous system, and thus offset the progression of the disease on dilation response.

“[T]he parameters measured by pupillometry changed according to the motor progression of PD,” the researchers wrote, adding that “pupillary parasympathetic dysfunction progresses with the progression of PD. In contrast, the factors related to sympathetic dysfunction did not change much, implying that pupillary sympathetic dysfunction advances relatively slowly even [in] PD advanced.”

The authors thus suggest the progression of Parkinson’s disease could be identified measuring pupil constriction velocity

by Yedida Y Bogachkov PhD | September 24, 2021

Being proactive

In my May 28th post I mentioned that I ordered a stylish Helmet/hat.

I wore the helmet hat to two graduations. Then, when I was going into the hospital to check on a sister I minister to, having received a message that she had fallen and was being admitted to the hospital, I didn’t think to wear the helmet.

As I was going toward the front entrance I stubbed my toe on a rise in the cement, and scared a lot of people, including myself. But the Lord blessed me, because I was enabled to regain my balance with some fast foot work. I’m sure it wasn’t a pretty dance, because several people asked me if I was alright.

As I was falling forward, I thought, “I’m going to faceplant on the cement and I should have w0rn my helmet!” Thankfully disaster was averted. As I have been consuming the New Eden twice a day, I have noticed when I am walking about, my arms have begun to swing, like a non-Parkinsonian’s arms would swing . Whereas, with typical Parkinson’s symptom, previously my arms had hung down at my sides when I walked with no swing at all. I have to assume it has also been enabling me to move my feet faster, thus righting my error.

Hugs n elbow bumps

I acquired the New Eden which I mentioned in a previous post and for the first month I used 1 scoop twice a day. Then I learned that I was taking a maintenance serving, and I should increase the amount I consumed if I had a health challenge, IF I wanted to see noticeable improvement towards normal. So I doubled up 2 scoops twice or thrice a day since then.

Then several weeks ago, I had a fall. I was pulling a hose across the front of the home when the hose snagged. I was feeling so well, I guess I was going faster than I should, because when the hose snagged, suddenly stopping me, I fell backwards and struck my back and my spine high between my shoulder blades on a cement boy sitting on a pedestal, dislodging it from the soil. I expected to have some massive bruising. I credit the new product with the fact that I had very mild bruising and the soreness and puffiness was totally gone from my spine a short 4 or 5 days after I fell.

A fellow PD friend on a Parkinson’s chat page posted a photo of herself wearing her head gear ; stating that she has fallen so many times, breaking an arm once. She knew it is just a matter of time before she hits her head on something as she is falling, so she decided to be proactive. The cap she was modeling made me think of an early day leather flight helmet.

After my encounter with the stone figurine I decided to go on line and search for protective head wear, hoping to find something a bit more attractive. RibCap is the company I found that I felt had the most attractive helmets. I saw two styles that I liked. One looks like a knitted stocking cap…. Much to warm for our Florida heat. The other one Looks like a base ball cap.. so I thought it would be a wiser selection But when I went back to the site, thinking I might order one, I stumbled onto a third style set to be coming available on April 30th and I thought it looked more like something I would wear in the garden, so I ordered one. But I had to wait because, due to Covid, they had not been able to acquire some of the material they need to be able to produce the helmets

I’ve had a couple more falls since I placed the order… nothing more than my dignity broken… but I received notice that my hat has left Belgium and my hat/helmet should be here by 4th of June. Maybe I’ll share a photo with me modeling it.

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On a Quest…


   I have been on a quest to find healthy alternatives for therapy.  And I feel pretty confident that Ascend Sciences is going to be providing products that hold a lot of promise.  But I’d like to know what other people think of them, too, so I’d really appreciate it if you could look at it and listen to the links in this blog post and then let me know what you think.’

   I typed in a previous post about the microcurrent Frequencies that will be in the Curie™ Unit. I read a book called The Resonance Effect — Frequency Specific Microcurrent. She explained how there are different frequencies in the air which carry sound waves and light waves from  the station into your home… and  the key fob sends a frequency to unlock a person’s car…   Likewise our bodies have unique frequencies.  Additionally each cell has its own frequency, so like switching TV channel, the technology has been refined to introduce microcurrents into the body with specific frequencies enabling a person to find relief from pain and optimize their restoration to health.    

        Then I learned about a nutritional supplement that my body has responded to, very well, but it was pretty expensive. please listen to the interview]   Then a cool thing happened.  I learned that Dr. Reg McDaniel’s son (also Reg McDaniel Jr.).has pooled resources with his friends and is putting a new company together.  Dr. Reg McDaniel has made some changes to the formula making an even better version,  Q800+ TM . and with their five million dollar business plan allows them to obtain the key ingredients from the same providers that were in the original product at significantly lower rates.  Whereas Dr. McDaniels has been selling his product by word of mouth, through a radio show in Texas, Reg has a different marketing approach.  So I will be enabled to obtain my product for a much better price .. 

They are having zoom meetings every Thursday at 7o’clock in Utah (9 at night in FL)  If you are interested in knowing more and want to share this opportunity with someone else, go for it   To receive the zoom link, just go to the Pre Purchase page on the website and put in your name and email and submit it and you will receive a confirmation email. and you may expect an email the next Wednesday from Ascend Sciences inviting you to log into the zoom meeting on Thursday by clicking on the provided link.

.For an invitation to enroll, please email me and I will be glad to assist you grandma.connection@gmail.com . There is no fee for enrolling during pre-launch. After launch people will be required to pay $35. sign up fee.

At the last meeting I attended, Dr. McDaniel spoke about some of the ingredients in the Q800+  Very informative..  The product is slightly sweet and easy to consume.  The 800 is in reference to the fact that this product has been verified to improve over 800 deviations from normal. i.e. Optimal health.