Advocate for yourself

I cry too easily, I can’t read anything aloud, with even a hint of sadness 0r stress or I start to cry and then I can’t talk… I am a silent cryer. When I attend a reception line at weddings, I cry. When we would watch a tv show as a family, the children delighted in catching me crying over silly things, and reminded me that it wasn’t real. I told them my bladder was simply too close to my tear ducts. I have never been depressed. I am the eternal optomist.

I appreciated the sentiments expressed by SilentEchoes in a forum I follow: She shared…..

“Pathologic tearfulness (emotional incontinence) is a disorder of emotional expression rather than a primary disturbance of feelings.”

“It’s not you – it’s your brain injury. I cry easy – too easy. I often lose credibility with the doctor when it happens to me. The imbalance of power in the exam room is very real.”

“A neurologist told me that the fact I was crying in his office was evidence of mental illness. When we left my husband said, we’re never going back to that a$$h*le. When you understand what is going on in your brain, you’re better equipped to advocate for yourself. This is much harder to do in the early phase when you’re baffled by the weird stuff you’re experiencing.”

“Gaslighting and psychological abuse is never okay; and especially not in the context of the medical setting.”

“Emotional incontinence is not associated with depression, impulsiveness, memory impairment, or executive dysfunction.”

“Pathologic tearfulness is not a manifestation of psychiatric illness, it reflects abnormalities in brain networks that control emotion regulation beyond the hippocampus. The condition may be present in other neurologic disorders, this article provides novel insights into the neural basis of affective control and its dysfunction in disease.”

https://n.neurology.org/content/94/12/e1320

“The more you know the better you can advocate for yourself.”

Perspective

I saw a line about the Flicker Effect, so naturally my curiosity was peaked. the following dial0g, explains it.

…………………………………………….

Managing the Flicker Effect; Conversation with Neo… From: Parkinson’s News Today by Dr. C | September 17, 202

“Why are you standing on top of that chair?” Dr. C sees Neo precariously balanced on the chair under the kitchen ceiling light. Neo is the part of Dr. C’s brain that functions as his inner voice.

“This lightbulb has been flickering. It’s so annoying! I’m trying to fix that.” Neo wobbles a bit on the chair, reaching a bit farther to tap on the lightbulb. “Sometimes, if I give it a little whack across its metaphorical lightbulb ‘head,’ it will stop flickering.”

While Neo climbs down and drags the chair back to the table, he asks, “Come to think of it, isn’t that like the ‘flicker effect’ you’ve been writing about?”

Dr. C carefully puts down his morning bowl of strawberries and finishes the last careful swallow before he replies. “Like the flow of electricity to a lightbulb, we have a flow of neural activity in our brain. A constant stream of it. When the brain gets damaged with Parkinson’s disease (PD), the flow of this stream gets interrupted. We get brief episodes of PD symptoms in the early stages. We start to feel symptoms that seem to flicker on and off.”

Neo nods. “That makes sense. Like the lightbulb, our system will flicker before it fails. Does that mean if I tap your head, you will function better?”

“Well, sort of.” Dr. C laughs. “What helps is using a shift in perspective — a head tap of sorts — to bring new possibilities to light. The shift is about changing how the flicker affects my life. When I decrease the flicker effect, my symptoms are not so loud.”

“Are you saying that PD causes a ‘flicker effect,’ and you can do something about that?” Neo asks, a bit incredulous.

“Exactly! If we can manage the flicker effect, it keeps the well of resources from running dry and decreases our chance of experiencing a threshold crossing event, thus avoiding the ugly days.

“I know when I’ve crossed the threshold. My thinking isn’t clear, and my muscles aren’t working properly. The ability to interact with the world in a meaningful manner is significantly curtailed. I manage the flickers of my ‘broken brain’ to minimize crossing over.”

Dr. C continues, “If I do cross over, it takes me 24 to 48 hours to recover from the ugly day and return to just having a bad day. So many resources are drained when dealing with the ugly day. To lessen that, I use threshold management. Successful threshold management frees up resources, which allows me to work on mindful movement.

“I use the phrase ‘broken brain’ in reference to the experiences of crossing over the threshold. It doesn’t mean that PD patients aren’t fully functional the rest of the time. It isn’t meant to be disparaging. It is a wake-up call that says, ‘PD patients need to manage, as much as they can, the symptoms and their lives to be as functional, productive, and, may I say, happy as possible. I’m using the term ‘broken brain’ as a huge, red stop sign that says, ‘Don’t give up the fight.’”

Dr. C. offers, “It has taken seven years of mental retraining to discover and implement my personal PD brain rehab program. One of the most important parts is exercise. Many researchers and clinicians know that exercise can offset the progression of PD. I am always citing research and references that support the compensatory strategies that I share with my readers.

“Medical studies have indicated that proper exercise consistently improves cognition and is linked to enhanced neuroplasticity,” Dr. C continues. “Exercise is a huge part of my PD brain rehab program. Fortunately, I still work in our gardens several times a week. A couple of hours on good or even bad days, and the benefits are worth the effort in overcoming my resistance. There are plenty of days when exercise is the last thing this body wants to do.

“Some may hold on to the idea that there is a quick fix and cure out there,” Dr. C says. “For me, I believe in the power of the human mind to rewire and heal. We just need a good map. This map-making is what I started devoting my efforts to seven years ago.”

Neo smiles and points at the overhead kitchen light. The light has stopped its blinking. Neo says, “We are on the edge of a new frontier, learning how to use the new map. New tools to help people live better with Parkinson’s will continue to emerge, improving what is possible. Maybe someday we will understand how to help people use threshold management as part of a rehab map for living better with PD.

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.

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.)

GERD

ok.. I’m going to attempt to get my blog entry’s linked in the index again. So as I find information such as this item, I’ll be posting them.

GERD or GastroEsophageal Reflux Disease is what happens when the Sphincter at the base of the esophagus that connects the mouth to the stomach, no longer closes tightly and allows stomach acid and food to backflow into the esophagus creating a host of uncomfortable symptoms. The esophagus becomes inflamed and irritated because it is not meant to be exposed to stomach acid.

Who Can Get GERD?

A common issue in people with Parkinson’s disease(PwP) and the general population is GERD. In PwP it is 4.1 times more likely to occur than in non-PwP.


When I had my EGD the Dr. told me that acid reflux had damaged my esophagus. It seems funny that when my lips can’t hold tight enough to keep the drool from making sores at the corners of my mouth, and the opening to the stomach doesn’t close tightly, yet, spasms close off the esophagus in between.

I typed about it all in my Knock on Wood post.

B complex and Anxiety

I wanted to tell a person struggling with anxiety about my blog, but when I looked I found this was still in my drafts. It contains three pieces of conversation that was had on a chat format for PWP.

“Weird but wonderful,

I’ve been having unfounded anxiety lately where I constantly feel like fight or flight jitters. Long story short, I read on some random website that B complex can help with this. Lo and behold, it did! (Or) I’m enjoying the placebo effect again. I also took a D vitamin today.

I actually have been avoiding B complex because I would think this would interfere with carbidopa, but I seem to be having a really good day of low anxiety and very mild PD symptoms.”

………………………

“Elevation of plasma homocysteine (hyperhomocysteinemi) has been linked to cardiovascular disorders, an increased risk of fractures in the elderly, stroke, and to neurological conditions such as PD and Alzheimer’s. Even mild elevations in homocysteine can significantly increase the risk of cardiovascular events such as stroke and heart attack and increase the risk of cognitive decline in the future.”

neurologysolutions.com/park…

………………………….

“Many studies have shown that PWP are often deficient in b12, and lacking the vitamin can cause all kinds of neurological, psychiatric, and motor symptoms. B12 is also a methyl donor, so it can certainly cause anxiety and panic attacks in some that are over methylated at high doses, but more commonly it’ll have an opposite effect in those who are undermethylated. Get tested and supplement adequately.”

……………………………..

“Have you tried the Hardy’s den yet? Worth a shot. It has lots of trace minerals too. Maybe you have a few things missing in your diet so this tops them up as well as all the b vitamins.”

……………………………

Since anxiety isn’t a problem for me, I haven’t pursued checking out Hardy’s Daily Essential Nutrients. But I left it in, for what it is worth. Sue

In the cards

On December 29th I received my first container of Glyconutrients… So I am beginning a new product with the New Year. It is called ‘New Eden’    John and I are hopeful that our bodies respond for an improved normal.  I’d highly recommend you folks watch the interview that opens for viewing on this page at this link.    https://www.wellnessquest.org/                                                                                                                                                                                                                                                             

Apathy

When I was listening to a presentation, I heard the speaker say… ‘a person with Parkinson’s may not exercise because of apathy.’ I wondered if that might be MY excuse for not remembering to exercise as often as I should? NO, I’m just easily distracted, by researching and working to create blog posts, and weeding, or gardening, or volunteering to do service projects… I want to do research on family history, and write more family history.  In other words:   I simply never found exercising rewarding.

Still, I wonder, can you have apathy about one thing, if you are able to focus on other things? According to ‘Psychology Today’…

“What, exactly, is apathy? In a sense, it’s something like falling in love. You can describe it all you want, but until you’ve experienced it, you can only guess at what it feels like. Paradoxically, what makes the feeling of apathy unique is that it’s essentially the feeling of not feeling. It’s something that at some point in your existence you’ve encountered. Whenever you feel that something vital is missing from your life, yet lack the  drive to pursue it, you’re afflicted with this curiously “emotionless” emotion.”

“Through much psychological research, it’s now accepted science that you must experience feelings about something if you’re to take personally meaningful action on it. And without any compelling emotion to direct your behavior—and apathy literally means “without feeling”—you just aren’t sufficiently stimulated to do much of anything.”

“True, apathy is a feeling. But it’s also an attitude. And sadly, that attitude is one of indifference . . . unconcern . . . unresponsiveness . . . detachment . . . and dispassion. Such an attitude saps you of so much energy that you feel lethargic, listless, and enervated—almost too “paralyzed” to act—and certainly without the will to do so. Which is why apathetic individuals are easily identified by their very passivity. Their interest in confronting life’s challenges is seriously compromised. They just don’t care enough. And frankly, they don’t care that they don’t care.”

………………… ” So they can’t think of anything worth striving for.”

I liked the attitude a fellow PwP shared:”there is no easy answer I have yet found to apathy. It is always there, as patient as the law of gravity. Fight it directly and it will temporarily retreat. The only partially successful response I ever found was in Sun Tzu’s “Art of War”. “When faced with an unbeatable foe, you do not fight, you deny him victory.”