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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.

 

Hospitalization Dangers Awareness

Acquire an Aware Bag, before you need to have a stay at a hospital . https://silverliningsandparkinsons.home.blog/2019/02/15/aware-in-care/ the link tells you how t0o get your free Aware In Care bag and what all is included in the bag

Parkinson’s Symptoms Awareness

We must place this information into the proper hands!

We must relieve the caregiver’s burden of the need to teach hospitals and first responders, especially during a difficult and stressful time.

Hospitalizations Dangers… pbh-org.com/?fbclid=IwAR2zg…

Parkinson’s CARE Awareness is a cause needed within the Parkinson’s community around the world. Those who CARE for those with Parkinson’s need more than the typical Parkinson’s information. They need education and support in order for them to help manage the disease and its impact, the collateral damage. These carers are often the ones who have the information and knowledge needed by the medical and pharmaceutical world.

PBH-ORG.COM’s mission, to “provide those with Parkinson’s a higher level of care”, is designed to help their care person, family, friends and community through emotional support, education and programs. Our research has shown, educated, and supported carers profoundly impact the quality of life for their husband or loved one with Parkinson’s. The simple act of removing even a small part of the stress in the caregivers life can create a more positive and healthier surrounding for the one they care for.

A shared with me by a fellow PwP

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 or 3 scoops twice a day for 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.

Melatonin

Parkinson’s Disease (PD) and Melatonin

Previously we discussed how melatonin can be beneficial for people with Parkinson’s disease (PwP) at a dose as low as 10 mg / day. Recent studies are confirming that Parkinson’s disease (PD) is a risk factor for cardiovascular disease (CVD). The relationship is not yet fully understood, but it is now clear that CVD is something that PwP need to be aware of and should be taking steps to try and prevent CVD from starting or advancing. Obviously CVD is problematic in other health issues as well as in the general public, but I will discuss how melatonin may be able to reduce the risk of CVD in PwP as well as in people in general.

https://pubmed.ncbi.nlm.nih.gov/32002576/

The following meta analyses discusses how PwP are at higher risk for CVD even though it was previously speculated that PwP were at lower risk because they present with fewer vascular risk factors for CVD and smoke less. Smoking is a risk factor for CVD. If your doctor, neurologist, movement disorder specialist or other healthcare professional has not informed you of this risk factor for CVD, now you know and can take steps to try and prevent or lessen your chances for getting CVD

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6130276/

We have melatonin in 3 mg. Which helps Rusty (the neurotic dog) calm down during thunder storms or when neighbor’s set off fireworks.

Although these excerpts I shared are more about CVD, I suspect 10 mg. melatonin might be worth a try for calming anxiety or provide relief for sleep issues which are frequently problems for PwP.

Who says “You Can’t”

Who says ‘You can’t teach an old dog a new trick? I suppose my senior citizen status qualifies me as old … But I learned something this past week.

Due to my persistent drooling condition, the corners of my mouth were cracked and a very raw line had formed and descended down from both corners of my mouth, extending nearly 2/3rds of an inch down on each side of my chin. When I opened my mouth wide enough to insert my dentures the corners of my mouth would crack and bleed. It had become unsightly and made me grateful for being able to hide behind my ‘covid mask’.

What I learned from a grandson this past week, is that simply by applying a hydrocortisone cream onto the sore places morning and night, and in between times… the soreness can be held away. Of course the drooling will continue but I celebrate a small victory.

Negative Mindset We only live once Positive Mindset Wrong! We only die once. We live every day.

Making Healthy Progress

On May 5th I posted about the Resonance Effect

‘The book on Amazon you can buy right now is called Resonance Therapy by Carolyn McMakin. wherein a person can learn about the history of and how Frequency Specific Microcurrent is changing lives. ‘

“Frequency Specific Microcurrent (FSM) works on the body on the same principle as a key fob which uses resonance to unlock a car door (or) as a radio transmitter and receiver resonate with each other to bring a signal into your radio.. or TV. “Resonance follows the laws of physics and the observations and principles of science”

At that time I had learned of a device that had 20,000 medical doctor users in Europe and tens of thousands in 43 countries who are not doctors and became available May 1st in the USA.  The claim was ‘If you can push on an app on a smart device then you can learn how to use this amazing FDA class II medical device.’

I acquired the device… it was so flimsy and cheaply made and difficult to use and the company offered zero customer support. But despite the glitches, the product did work.

Mid January of 2021 I learned about micronutrients. At the link just below you may view an interview where a Dr. McGee speaks with Dr. Reg McDaniels about restoring our bodies to normal I found his presentation of details about the value of micronutrients pretty compelling. He is very careful to say it is not something that cures… But that it gets nutrition to the cellular level.

The person who introduced me to the Frequency Specific Microcurrent was having great success in assisting people find better quality of life with the device, but he was spending hours each day doing what the company should have been doing; providing customer service.

He, Reg McDaniel Jr., and his working partner, Beau Johnson have withdrawn from the FSM company which is based in Germany. And have put together an amazing group of successful marketers, engineers, scientists, lawyer and a Doctor. They even have acquired a website that works well. Ascend Sciences International The ‘Curie” is still in development stage but they have a ‘Mini Curie’ set to come into production in the next two or three months which they will allow those who have pre-purchased Curies to purchase a ‘Mini Curie’ before the company actually Launches, so the people can begin sharing the ‘Mini Curie’ with ailing friends and family.

Additionally, Reg’s father Reg McDaniel Sr. has given them the list of ingredient’s and recipe / formula adding additional nutrients to market the HerbaCeuticals ™ Q800+. The Aloe has been contracted for. It comes from Costa Rica and is an exceptionally large Aloe Vera plant grown in volcanic ash enriched soil along with the other necessary ingredients. The ratio of the Mannose from the Aloe remains the same as it was in the previous version of Dr McDaniel’s formula, but other proportions were reduced slightly to allow for the additional nutrition sources. The pandemic has made it more difficult to acquire the last ingredient for the new formula. Everything is in place for the production of the Q800+ just as soon as the last ingredient has been acquired.

If anyone is interested in attending a zoom meeting to learn more, please reach out to me.. If you check out the website , PLEASE, do ‘NOT’ click on the ‘JOIN NOW’ on the home page of Ascend Sciences Intl. They are still in PRE-LAUNCH mode..

BTW… I feel like the tools I have spoken about in this post are having a very good impact on my progress toward normal.

Conversation on ideation

Please read this discussion and offer your own thoughts. @mckchart said :

I asked the same question (why me ) but get one thing straight it’s not a death sentence so be very positive and make sure you don’t let it get you down ,many a famous person has thrown in the towel and done the unthinkable ,just make sure you have someone to talk to when things get on top of you …….Parkinson’s educator ( feel free to contact me )

……………………………… Here is @pdpatient’s response :

@mckchart, the “unthinkable” was excellently phrased by you and I couldn’t have said it better. However, you have inadvertently opened the proverbial pandoras box for some PwP’s such as me.

I was formally diagnosed in the early summer of 2014 by an MDS af the University of Columbia, NYC. I fell into a rut and things went ft bad to worse and I was contemplating the “unthinkable,” which I really hadn’t thought through. My son was 14 and my daughter was 9 and I was the only breadwinner of the family. My only concern for my family was that I would need to die in such a way that it could not be labeled as a suicide. I had my policy long enough, but I could not trust in the system to honor the payout for a suicide.

Around that time, my most favorite movie actor – Robin Williams had also received a bed diagnosis . I was devastated. Next thing I heard, he had committed suicide. Oops. I have said the “unthinkable,” but it is time for us to face the monster head on and find a way to make this widely known to PwP’s, newly diagnosed PwP’s and their families.

Thankfully, my family came to my rescue and I agreed to take powerful medications that brought me back from the brink. I survived and my family is doing well still. I am grateful to God and the Universe for everything that I have been fortunate to receive despite my perception that others are more deserving than I. After all there are almost 8 billion people on this planet and I am only one of the lucky ones that is still alive

I learned along the way that life doesn’t end with a Parkinson’s diagnosis. Every doctor that I have met has told me that I was not facing a death sentence. True. However, what they don’t say is that the possibility of suicide in newly diagnosed PwP’s is extremely high. This is an existential problem that is overwhelming in its impact and understated in its awareness.

Unfortunately, I am still haunted by the ghosts of this seemingly “easy way out” or so as it seems. It is a path chosen by many and it rears its ugly head once in a while when the symptoms get worse.

This is a topic that is ripe for involved and in depth discussion.

…………………………… P Bear’s response

I do not expect to do myself in over Parkinson’s. However, at one time I had an uncontrolled chronic pain condition that did cause suicidal ideation.

Each person’s circumstances are unique. It is important to tend to our responsibilities. That said, if someone’s health situation is such that they deem it fitting and proper to leave, it is not my place pass judgment on that decision.

I get that your mention of income is in the context of why it was appropriate for you to stay. However, income is not a measure of worthiness, and a more modest description would be preferable in my opinion.

……………………………. Sharon provided “

You might want to refer to this Korean study found in science direct.

sciencedirect.com/science/a…

“Suicide risk in PD patients is approximately 2 times higher than that in the general population. Psychiatric disorders, and also L-dopa medication need further attention with respect to suicide.”

Another good overview can be found in Neuropsychiatry Review

jnnp.bmj.com/content/90/7/822

“Suicide is consistently listed among the top 10 causes of death in the USA, with rates steadily climbing throughout the 21st century and reaching an annual rate of 13.4 deaths per 100 000 in 2016.6 7 It is a dominant cause of mortality among the elderly and persons with neurological diseases including stroke,9 Huntington’s disease10 and epilepsy.”

” Depression in particular is common in PD, with one meta-analysis suggesting that 17% of PwP suffer from major depressive disorder and 35% suffer from clinically significant depressive symptoms.”

In contrast, suicide is not a major cause of PD death (which are falls and pneumonia.)

Atypical


Atypical parkinsonisms are conditions in which an individual experiences some of the signs and symptoms of Parkinson’s disease (PD) — tremor, slowness, rigidity (stiffness), and/or walking and balance problems — but does not have PD. Atypical parkinsonism can be due to certain medications (some anti-nausea and antipsychotic drugs), other brain disorders (repeated head injury or multiple small strokes) or neurodegenerative diseases.

Parkinson’s Plus

The neurodegenerative diseases, which cause damage or death of brain cells, include corticobasal degeneration, Lewy body dementia, multiple system atrophy and progressive supranuclear palsy. These conditions are often referred to as “Parkinson’s plus” because they mimic PD but have extra associated symptoms (the “plus”). They can be misdiagnosed as Parkinson’s disease because no blood or imaging test can, on its own, make a definitive diagnosis. (As with PD, the diagnosis is based on a person’s medical history and physical examination.) Early in the course, people with Parkinson’s plus syndromes also may get some benefit from levodopa, the drug most commonly used to treat PD. A poor response to levodopa, development of additional symptoms and more rapid progression of disease may eventually differentiate Parkinson’s plus from PD, although it can take years for these differences to emerge. As with PD, no disease-modifying therapy has been discovered for any of the neurodegenerative atypical parkinsonisms so treatment is symptomatic and supportive.Corticobasal Degeneration (CBD)Lewy Body Dementia (LBD)Multiple System Atrophy (MSA)Progressive Supranuclear Palsy (PSP)

Management of Parkinson’s Plus

These diseases are complex conditions that progress over time. As ongoing symptoms worsen and new symptoms arise, a person’s needs will change and caregivers’ roles and responsibilities will evolve. A team approach involving the person with disease, caregivers, family members and multiple medical professionals, is necessary to address the multitude of symptoms. As with PD, no disease-modifying therapy has been discovered for the neurodegenerative atypical parkinsonisms. Treatment relies on medications to lessen symptoms, allied health care services, assistive devices (canes or walkers) when necessary and caregiver support. Palliative care specialists can be especially helpful consultants for managing symptoms and coordinating goals of care.

Levodopa is usually the initial therapy for motor symptoms, although most people do not get a significant or long-term response. Other Parkinson’s medications are sometimes used in conjunction with or instead of levodopa, but in general these are not very effective either. For dystonia, Botox injections can be helpful, and for associated non-motor symptoms (such as memory, behavioral or sleep disturbances), doctors may prescribe a variety of other medications.

Physical and occupational therapy are beneficial, specifically for dystonia, gait and balance problems, and falls. In earlier stages of disease, therapists can develop programs aimed at maintaining mobility, preventing falls or falling in ways to minimize injury. They can also assess the need for a cane or walker. In advancing disease, therapists can teach exercises to maintain joint range of motion, evaluate the home for safety and suggest modifications or adaptive equipment (such as shower grab bars or a raised toilet seat), and determine the appropriate type of wheelchair if one is necessary.

Speech therapists can recommend language exercises for speech disturbances and dietary and/or mealtime adjustments for swallowing problems. If swallowing problems are particularly severe (leading to weight loss, choking or pneumonia), your therapist or doctor may discuss starting a feeding tube. While not always required, it’s worth thinking about this possibility early on so that a person (and their caregiver’s) thoughts can be taken into full consideration.

Throughout the course, social workers can provide educational resources, link to support groups and assist with finding in-home care services or alternative living situations. Palliative care providers can be consulted at any point for help with managing symptoms and determining goals of current and future care. In conjunction with a person’s movement disorder specialist, palliative care experts can aid in optimizing medical therapy while lending extra emotional and spiritual support, and c

https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?atypical-parkinsonism

Butyric Acid

Alternative Medicine Review has the article “The Potential of Butyric Acid as an Alternative Treatment for Parkinson’s” atlasbiomed.com “Could Parkinson’s Disease Begin in the Gut” states “butyrate producing bacteria less in PD.”

The man from the Parkinson’s News Today forum, Russ, said he uses T. E. Neesby brand Butyrex. The ingredients are: calcium 480mg, magnesium 240 mg, Butyric Acid 3.6 g. Having never heard of this brand I was apprehensive. But I have been so pleasantly surprised. Butyric Acid is a short chain fatty acid that helps the colon. I was concerned that it would not make it to my colon but perhaps it is because the improvement is very definite.

Oh and I want to add that On the same Parkinson’s News Daily forum, a wife shared that her husband has had significant improvements with mannitol. I started using it a few weeks ago figuring, what the heck, might as well try. I am suddenly smelling things I previously did not even know had a fragrance like my mascara!

…………………………………………………………………………….

Butyric acid naturally occurs in butter, hard cheeses (e.g., parmesan), milk (especially goat’s and sheep’s), yoghurts, cream, and in some other fermented foods (e.g. sauerkraut, pickled cucumbers, and fermented soy products) but in very small and insignificant amounts for gut health.

……………………………………………………………………………

I’ve read the theories that Parkinson’s begins in the gut. And among the foods that numerous sources say that the best diet for gut health includes a lot of fermented food I’ve also read that butyric acid is necessary in the colon to enable the probiotics we take be effective. But it is hard for me to eat enough fermentation to be effective. Therefore I was excited to learn about a supplement to enable me to increase my butyric acid consumption.

Just saying.. for what it is worth.