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The Journey Has Begun…

 I can’t say with any certainty when it began. 

     As a member of the Church of Jesus Christ of Latter Day Saints, firm in the faith, I understood none of us are exempt from trials that will test us.  But I also knew many of our trials are a consequence of prior bad choices.  Because I was born with a strong healthy constitution and had a health conscious life style, complete with nutritional supplements, herbs & essential oils I felt like a candidate for one who could live to witness the second coming of Christ.

     John & I raised ten children of our own, and as circumstances permitted we were professional parents to numerous special needs young people, then for nearly 16 years we operated a licensed Family Group child care in our home.  We lived on an acre of land and had an amazing garden and all sorts of fruit trees and berries.  I felt like my life style afforded me all the exercise I needed.

In the spring of 2015, I noticed it was difficult to move around in the cherry tree while picking.  But when I climbed into the apple tree to string lights for our youngest daughter’s wedding reception in June of 2015… I knew my days of tree climbing were over.

      After moving to Lady Lake, I transitioned to a holistic Dr. stating I had lots of abnormal symptoms. None, by themselves were serious, but I wondered if together they might be indicative of a bigger problem? April 30th 2018, by process of elimination and observation, Dr.Kraucak determined my diagnosis to be Parkinson’s Disease. For me, having a name meant I no longer needed to wonder why I had such a soft voice and drooling, why my hands were so weak, while playing family games, I couldn’t hold cards to shuffle and my handwriting was so small and unintelligible. A name meant I now understood why I felt like my feet struggled to keep up with my head and I couldn’t balance enough to participate in a water exercise class, etc..

  It has taken NINE months since I received the name to target my research efforts… but now I am ready to begin to blog.

Welcome 

I am DELIGHTED to have you here. If you haven’t done so already, please browse the website to learn more.  I will try to make it easy for you, by linking my blog entries to the INDEX page,to facilitate your search for specific topics.  

Don’t forget to click on FOLLOW so you stay up to date on additional new content!

      I have already learned so much on this journey with Parkinson’s disease. I saw a blog called Parkinstand hosted by a lovely African lady seeking to locate other people of African ethnicity.  I was prompted to create a forum where people of my faith could share their experiences to strengthen one another.

I can’t wait to share all that, and more, with you!

Stay tuned.

 

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.

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.

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.

Covering My Bases

I suspect it is too late to help the particular patient, but this perspective might be beneficial to some of my readers.

The scenario: Her husband didn’t pick his foot up high enough when approaching the curb. which resulted in a fall on cement and a broken bone. He is hospitalized. After giving him a swallowing test, the doctor recommended the feeding tube to increase his food consumption, to give him the strength needed to go through therapy

A fellow PwP posted the following in a chat with the caregiver who was seeking a second opinion about the Dr’s recommendation to give her husband a feeding tube (placed through the skin into the stomach) to prevent aspirational pneumonia.

………………………………………..

” MDs never speak of potential adverse effects of proposed treatments. In the case of a feeding tube: stanfordhealthcare.org/medi…

“Possible complications associated with a feeding tube include:

• Constipation • Dehydration • Diarrhea • Skin Issues (around the site of your tube)

• Unintentional tears in your intestines (perforation)

• Infection in your abdomen (peritonitis)

• Problems with the feeding tube such as blockages (obstruction) and involuntary movement (displacement)”

incidence of complications is alleged to be low but what is reality? Here is one study of the effect of probiotics on infection. This is the first study I pulled up: mdpi.com/2072-6643/13/2/391

“Differences between the two groups in number of infections (25% intervention group vs. 44% controls), antibiotic therapies (12% vs. 37%)” This was only over a period of 60 days. The number is shockingly high. Trading aspiration pneumonia for peritonitis is not a good trade. Now let us look at prevention of aspiration pneumonia:

General search: scholar.google.com/scholar?…

Prevention of aspiration pneumonia (AP) with oral care: sciencedirect.com/science/a…

“Abstract

AP is a major cause of morbidity and mortality in elderly patients, especially frail elderly patients. The aim of this article is to review effect of oral care, including oral hygiene and improvement of oral function, on the prevention of AP among elderly people in hospitals and nursing homes. There is now a substantial body of work studying the effect of oral care on the prevention of respiratory diseases. Oral hygiene, consisting of oral decontamination and mechanical cleaning by dental professionals, has resulted in significant clinical effects (decreased incidence of pneumonia and decreased mortality from respiratory diseases) in clinical randomized trials. Moreover, studies examining oral colonization by pneumonia pathogens have shown the effect of oral hygiene on eliminating these pathogens. In addition, swallowing training has been shown to improve the movement and function of swallowing-related muscles, also resulting in decreased incidence of pneumonia. These findings support the contention that oral care is effective in the prevention of AP.”

Increased visits to the dental hygienist sure beats a feeding tube.”

…………………………………………………………………

My understanding is, when the PwP has his/her swallowing affected, the signal to close the opening into the lungs doesn’t react fast enough to get fully closed. Usually I strangle 0n clear liquids and am able to cough it back out. Occasionally a crumb of toast or some such thing will get in the wrong place triggering a serious coughing fit. So far, I am okay.

When I learned about aspirational pneumonia I was proactive and received a pneumonia vaccination. I have become very mindful about flossing and brushing twice a day. And I get a professional cleaning twice a year.

Trying to cover all my bases.

Sue

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