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.

Dust off the sewing machine

Eliza-Jane posted: Trouble turning in bed?

I made myself a couple of satin tubes. When one is in the wash I have a back-up. I bought the satin online. Here are the instructions. Cut a length of satin the same width as your fabric i.e. approx. 1 meter. Then cut a second square the same. Place the first square down, satin side up with the cut ends at the top and bottom. Then place the second piece on top of the first, satin side down with the cut ends left and right. Do not just fold it over on itself, that will not work. Stitch the 2 sides together leaving the top and bottom open. Then hem or make a satin binding for the top and bottom. I used a French seam on the sides. The top and bottom are left open like a tube. Place it on the bottom sheet of your bed and when you get into bed sit on the bottom end of the slip near you. You will find this helps to slide over and up and down. It’s not perfect but it helps.

Humpty Dumpty moments

Neither PwP nor a doctor can predict which symptoms will arise or the severity of those symptoms. It is a lifelong and progressive disease, with symptoms steadily worsening over time, therefore fall prevention for many is the first call to action for preparing their loved one for the journey ahead

Teri wrote : An approach to avoid injury while falling:. Knees, ankle, and all the rest, most important to protect is the HEAD.


So many falls went straight to my head. They didn’t hurt A lot, but I sure got worried as they piled up. So I decided that before my almost inevitable HUMPTY DUMPTY moment, when all the king’s horses and all the king’s men couldn’t fix a thing, I would find a helmet. And this is what I found (sorry, the photo disappeared) I paid $176.00 for it out of pocket; Medicare wouldn’t cover it I have fallen and hit my head many times since, AND IT WORKS

…………………………………………….

A pastor recently typed: Don’t let pride or stubbornness get you injured or dead
use a walking aid to prevent falls. My motto, “I’ll crawl before I’ll fall.” and I have done so. Bible says ‘pride goeth before a fall.’ May God bless us on this journey!!!

——————— But to consider the feelings of the PwP, to allow them to not feel conspicuous, and normal, I found two Ribcap products. (see the links)

An owner and wearer of two Ribcap products, the baseball style hat and also the beanie. I love how ‘Protection meets fashion’ in these beautifully crafted pieces of headwear and at-risk persons like myself can wear head protection without the worry of any stigma.

Falls and Common Household Hazards

If you or a loved one has Parkinson’s disease, here are tips for preventing falls around the home:

  • Floors. Remove all loose wires, cords, and throw rugs. Minimize clutter. Make sure rugs are anchored and smooth. Keep furniture in its accustomed place.
  • Bathroom. Install grab bars and nonskid tape in the tub or shower. Use nonskid bath mats on the floor or install wall-to-wall carpeting.
  • Lighting. Make sure halls, stairways, and entrances are well lit. Install a night light in your bathroom or hallway. Make sure there is a light switch at the top and bottom of the staircase. Turn lights on if you get up in the middle of the night. Make sure lamps or light switches are within reach of the bed if you have to get up during the night.
  • Kitchen. Install nonskid rubber mats near the sink and stove. Clean up spills immediately.
  • Stairs. Make sure treads, rails, and rugs are secure. Install a rail on both sides of the stairs. If stairs are a threat, it may be helpful to arrange most of your activities on the lower level to reduce the number of times stairs must be climbed.
  • Entrances and doorways. Install metal handles on the walls adjacent to doorknobs of all doors to make it more secure as you travel through the doorway.

Tips for Maintaining Balance With Parkinson’s Disease

  • Keep at least one hand free at all times; try using a backpack or fanny pack to hold things rather than carrying them in your hands. Never carry objects in both hands when walking as this interferes with balance.
  • Attempt to swing both arms from front to back while walking. This may require a conscious effort if Parkinson’s disease has diminished your movement; however, it will help you to maintain balance, posture, and reduce fatigue.
  • Consciously lift your feet off of the ground when walking. Shuffling and dragging your feet may cause you to lose your balance.
  • When trying to navigate turns, use a “U” technique of facing forward and making a wide turn, rather than pivoting sharply.
  • Try to stand with your feet shoulder width apart. When your feet are close together for any length of time, you increase your risk of losing your balance and falling.
  • Do one thing at a time! Don’t try to walk and accomplish another task, such as reading or looking around. The decrease in your automatic reflexes complicates motor function, so the less distraction, the better!
  • Do not wear rubber or gripping soled shoes, they may “catch” on the floor and cause tripping.
  • Move slowly when changing positions. Use deliberate, concentrated movements and if needed, use a grab bar or walking aid. Count 15 seconds between each movement. For example, when rising from a seated position, wait 15 seconds after standing to begin walking.
  • If you become “frozen,” visualize stepping over an imaginary object, or have someone place their foot in front of yours to step over. Try not to have a caregiver or companion “pull” you, this may throw you off balance and even prolong the episode.
  • If balance is a continuous problem, you may want to consider a walking aid such as a cane, walking stick, or walker. Once you’ve mastered walking with help, you may be ready to try it on your own again!

Poling Update

As I reported earlier, I’ve learned about intentional walking… aka Fast walking. The goal is to get up to an hour a day… 3 or 4 times a week. So I was doing two laps around the block for John’s once around. But since implementing the poles’ John is able to walk faster, and I am pushed to keep up with him, so it has been super nice.

John says he can walk faster because he is putting his weight onto the poles which relieves his hip and leg pain. I have a walking partner and Pandora on my phone playing music from my pocket. The Distance we walked the last time was 1.25 mile. in 40 minutes. We have ventured further and further into our neighborhood. Life is good.

Sorry, I’ve been focusing on Christmas letters instead of writing on the blog… and I know, I somehow lost a bunch of links in the index that I need to fix. But I’m happy to report I think I am holding my own, quite well.