Category: Non-Motor symptoms

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!

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/

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

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.

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