Why don’t you like me?

The title of this blog post is the name of the poem posted in a discussion group. Zella wrote earlier this week… “I thought my husbands poem might be suitable for Parkinson’s Awareness Day!”

To which LAJ responded… “I thought it was going to about a caregiver who thought their husband didn’t like them anymore, which is what it felt like before I knew what was happening due to the frozen face that seemed to glare at me all the time😟”

WHY DON’T YOU LIKE ME?

“When did it start?” the doctor said “The hate campaign that’s in your head”

It started out with a little thing A parcel neatly tied with string

I couldn’t get the knot undone It really wasn’t too much

The problem very quickly spread A champagne cork encased in lead

Just pull the corner, plastic tag It’s just like opening up a bag

But heat-Sealed cartons won’t comply They tear or shred, I wonder why?

They should open up for me Not stay tight shut. It’s misery

It cooks in minutes on the pack But opening it, I’ve lost the knack

It doesn’t work I can’t get in, This thing is going in the bin.

I’ve stabbed it with a table fork Tempers rise, I cannot talk.

Have all these packs developed hate For me no meals, note the date

But all my efforts are in vain Four broken nails what a pain.

I’ve tried with other simple things 10 pound note develops wings

It floats and flutters then it sighs. I’m out I’m out it loudly cries

It won’t go back without some force All my notes have changed their course

Why do all things hate me so? Why won’t they just go with the flow

Is it old age that treats me thus I can’t go on I’ll make a fuss

Coordination is the key Its making such a fool of me

Filing papers opening mail all tasks that I can fail

It was my mother that I told You take too long, it’s cause you’re old

Parkinson’s is such a sod For my old back another rod

I’d change the duvet if I could My fingers seem to change to wood

The pillowcase will not comply It really makes me want to cry

Zips and buttons stubbornly Are never like they used to be

Sometimes it really makes me laugh I seem not whole I’m cut in half

The half that works has disappeared The other half behaves quite weird.

It moves and shakes all on its own It will not do the things It’s shown

My life is turning into farce And Parkinson’s can kiss my arse

Written by…. John Smith

I am pleased

I am pleased to alert you to a new book published by some friends of mine. We met, because of the Parkinson’s group in the villiages. John and I attended one of their seminars and deffinitley learned some valuable information which has already been of great worth. I recommend it to both caregivers and PD warriors. Sue

A new book, “Our Parkinson’s Disease Instruction Manual: How to have a good life while coexisting with Parkinson’s disease” is now available at Amazon.com. It can be purchased as a digital download or as an 8 ½ x 10 inch printed book. The digital version can be read on a Kindle, tablet, computer, or smartphone. The digital version costs $4.95 or, if you have a Kindle Unlimited subscription, there is no charge. The printed version costs $ 11.95 plus tax.  Go to Amazon.com and search for “Our Parkinson’s disease Instruction Manual”.

Authors are fellow Villagers Edmund Smith and Jane Masterson. They have 25-years of experience with Parkinson’s disease and are frequent speakers in The Villages and other places where they give a seminar entitled “Ideas for Living Well with Parkinson’s Disease”.

The book covers the following subjects in 24-chapters: How to get great medical care, Learning from others, Exercise, Drugs, Electronic gadgets, Tricks to unfreeze, Speaking loudly and clearly, Making the home PD friendly, The bathroom, The bedroom, Urinary incontinence, Keeping the caregiver healthy, Assist devices, Increasing your mobility, Lift assist, Preparing for a visit to the hospital, Inpatient rehabilitation, Driving, Flying, Vacationing, Parkinson’s and pets. The book includes thirty-five photographs and twenty-five Internet links.

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.)

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.

I’d like a Harmonica, please

Can you imagine sitting for a half hour each day breathing in and out thru a straw? That is an exercise used by pulmonary rehabilitation to strengthen diaphragm muscles for COPD COPD is a catch-all term that includes people diagnosed with illnesses like emphysema, asthma and chronic bronchitis. (I think with our slowed muscle response time and weakened muscles PwP could benefit equally well.)

VA Health Promotion-Disease Prevention Coordinator in Tampa… Dave Folds, says “The type of breathing used to play the harmonica is like the breathing exercise used in therapy for COPD. Basically, the breathing exercises are pursed lips style breathing, like breathing in and out of a straw (which would be) the same way you would blow in and out of a harmonica”

“By making music, it’s much more enjoyable than sitting at home for half an hour each day breathing in and out of a straw,” Folds said, “Most people in the class won’t do that, and they say so. But they will sit at home and practice their harmonica, some of them for hours.”

A veteran who has been learning to play the Harmonica said. “I do feel different. It made a noticeable difference. I have more endurance.” Additionally, “With the harmonica, you’re actually achieving something and hopefully getting pleasant sounds out of it. You’re getting the reward for the effort you put in.”

And thinking about breathing issues… I’ve begun trying to do the tongue in teeth, swallowing exercise as shared by a fellow PwP, since reading at the included link…

Early occurrence of inspiratory muscle weakness in …

“In Parkinson‘s disease (PD), respiratory insufficiency (including functional and muscle disorders) can impact dysarthria [difficult or unclear articulation of speech] and swallowing.”

……………………………………………..

He typed, “I used to have it. Now I do 5 minutes of “exercise” every night and it’s gone. The exercises include “Swallow 20 times while holding your tongue in place with your teeth. I recommend that you go through “the system” and spend some time with one of these swallow therapists.”

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

A Sugar that is good for us

Please be sure to check out the update 8/21/21 at the end of this post.

Glyconutrients are a group of sugars extracted from plants and thought to be essential for the body by helping cell-to-cell communication.

I first heard about glyconutrients as I listened to an interview about restoring our bodies to normal with Dr. Reg McDaniels as I was trying to learn about his product called New Eden. Their glyconutrients are taken from Aloe.

I posted on a forum for PwP that I was going to try it, and received (an opinion) that “It is just a sugar substitute… nothing to it.” So I typed glyconutrients into a search where I saw Mannitol credited with having glyconutrients. I remembered seeing posts where various PwP had attempted to steer us to Mannitol. ………………………………………………………………..

That is when I found research findings made in Israel (you will need to read the script, unless you are fluent in their language) on the web site for Mannitol. “Homeotreat developed a unique MANNITOL powder, containing, not only the natural sweetener (Made from vegetables such as onions, pumpkin, seaweed, mushrooms and more), which causes a decrease in the production of the alpha-synuclein protein but also the MUCUNA plant, which supports the increase in the amount of essential ingredients to healthy brain function.” ………………………………………………………………….

Mannitol is a type of carbohydrate called a sugar alcohol, or polyol, which are water-soluble compounds that occur naturally in many fruits and vegetables.

There are basically eight glyconutritients that scientists know about. These include: – Fucose – Galactose – Glucose – Mannose – N-AcetylGalactosamine
– N-AcetylGlucosamine – N-AcetylNeuraminic acid AND– Xylose

…………………………………………………………………

Then I discovered another web site with this statement : “– mannose and galactose — are the most important of all the different Glyconutrients. In fact, these two Glyconutrients act as the commander in chief for all immune system and cell to cell communication processes. Based on real scientific evidence, there is absolutely no validity whatsoever when it comes to the so called eight essential sugar theory that many companies tout in selling their Glyconutrient products. The bottom line is that the more you increase the level of other plant sugars in a Glyconutrient product other than Aloe Vera galactomannans, the more real health properties are diminished.

“It turned out that MPS had been isolated from Aloe, and extracted and dried as a powder extract utilizing a proprietary method. More specifically, MPS is a specific molecule called the galactomannan that is a combination of galactose and mannose in long linear chains.” –this one was pricy.. $190./30 day supply

.

I saw that Mannitol powder is sold (some claiming to be 100% pure) from lots of sources. locally at Walmart. drug stores or health food stores as well as online from many sources. It is sold as a low glycemic sweetener. The price is extremely cheep compared to the three I listed above. And from posts of users I have concluded, not as effective… depending on source and purity, etc…

=…………………………………………………………………..

……………………………..Approved as an injectable Medication

As a medication, it is used to reduce intraocular pressure in the eyes, as in glaucoma. The mannitol is a new solute in the intravascular space, which increases the tonicity of the blood plasma. The increased tonicity of the blood plasma draws water out of the vitreous humor of the eye and into the intravascular space.

Diuretic: It can be used in a lung test to diagnose asthma and other breathing problems.

……………………………………………….As a supplement:

Mannitol powder it may have some health benefits when taken as a supplement. Mannitol may support the digestive system, kidneys, and bladder.

Mannitol is a type of sugar alcohol used as a sweetener. It is used in diabetic food as it is poorly absorbed by the intestines. In addition to being found in whole foods, mannitol is commercially produced to help reduce calories from sugars in packaged foods. Its most common application is in chewing gums, both as a sweetener and as a powder to keep pieces of gum from sticking to its wrapping and machinery.

Mannitol has a variety of uses and it is also used to reduce elevated pressure in the brain (Central oedema) and in the eyes. Mannitol is a common low-calorie sweetener approved by the FDA and EFSA. ……………………………………………………………..

Sugar alcohols, including mannitol, have been shown to benefit oral health in several ways. They don’t contribute to cavity formation. When used as a sweetener in gum, the act of chewing also protects teeth from cavity-causing bacteria by promoting the flow of saliva. The FDA recognizes mannitol and other sugar alcohols as beneficial to oral health ……………………………………………………………..

When John and I began the New Eden, we were just doing the recommended dose. But since that time, I have learned that is considered a maintenance dose. For acute out of balance bodies, Dr. McDaniel recommends doubling the daily intake. I’m sure with two of us using from the same cannister, we will run out before the next cannister is set to arrive. [if on autoship, the cost including shipping is $109. /330 grams]

Since I had opted to purchase of the product from Israel, which includes the Mucuna. [but the glyconutrients aren’t derived from Aloe] I will alternately use the Mannitol in place of the New Eden… and attempt to notice any variations in body responses. for price comparison… 900 g / 109.90 +shipping from Israel $25.85 = $136.75

John said, ” the way I presented it seemed a bit negative.’… Not my intention. If you listen to the linked videos, you may feel more positivity.

8/21/21 By way of update

Dr McDaniel has, since I typed this, gone into business with his son A new company is very nearly ready to launch. AscendSciences.com With a Projection to launch internationally and able to place larger bulk otders, they are able to get the products that were in the new Eden at a considerable price reduction plus Dr McDaniel has been able to incorporate 5 additional nutrition enhancing products to make the best formula ever. The percent of the Aloe Mannitol has not been lowered.

The new product Q800+ will be available for something like $88. very soon.

Speech and voice disorders

Research shows that 89 percent of people with Parkinson’s disease (PD) experience speech and voice disorders, including soft, monotone, breathy and hoarse voice and uncertain articulation.

People with Parkinson’s (PD) may notice changes in or difficulty chewing, eating, speaking or swallowing. These changes can happen at any time, but tend to increase as PD progresses. Just as PD affects movement in other parts of the body, it also affects the muscles in the face, mouth and throat that are used in speaking and swallowing.

Beyond producing the sounds of speech, PD symptoms like a frozen or masked face can make it harder to communicate the emotions that go along with what you are saying. Others may misinterpret this as a lack of interest in the conversation or aloofness. In addition, some people with PD struggle to find words, and so they may speak slowly. And in other cases, PD causes people to speed up their speech, so much that it may sound like stuttering.

HOW does a person know if they have speech problem? Ask yourself if:

  • My voice makes it difficult for people to hear me.
  • People have difficulty understanding me in a noisy room. 
  • My voice issues limit my personal and social life. 
  • I feel left out of conversations because of my voice.
  • My voice problem causes me to lose income.
  • I have to strain to produce voice.
  • My voice clarity is unpredictable.
  • My voice problem upsets me.
  • My voice makes me feel handicapped.
  • People ask, “What’s wrong with your voice?”

Bradykinesia

Bradykinesia or slowness of movement is one of the main symptoms of Parkinson’s.  The general effect of bradykinesia is that it takes more time and effort to complete daily tasks, which can result in fatigue. 

When experiencing slowness of movement a person with Parkinson’s may notice the following:

  • Lack of spontaneous activity e.g. arm swing diminishes
  • Fine motor coordination is reduced e.g. handwriting becomes smaller
  • Changes in walking such as short, shuffling steps
  • Episodes of freezing or periods of immobility
  • Difficulty turning over in bed or rising from a chair
  • It takes longer to do things

Managing Bradykinesia

Some people with Parkinson’s find physiotherapy helps to improve their symptoms.  A physiotherapist can recommend exercises and techniques to help with your mobility.

Medications for Parkinson’s can also help improve movement and reduce slowness.