Month: January 2021
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.”
“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?”
How many options?
Someone else made a comment: “We take meds to make the symptoms bearable. If your symptoms dont require meds yet dont take them, but if they do why deprive yourself? You should not feel guilty or be made to feel guilty and its not giving in.”
Kelly Crumrin wrote the following in an article in the My Parkinsons Team community. She has given pretty thorough details about the numerous options. “People with Parkinson’s can improve their symptoms and quality of life with effective treatment options.”
“Symptoms and severity can vary widely between individuals with parkinsonism. There is no standard treatment for Parkinson’s. Guidelines for Parkinson’s treatments are based on what symptoms a person has, the severity of the symptoms, how long they have had Parkinson’s, which type and stage of Parkinson’s they have, tolerance of side effects, the age of the person, and any other health conditions they have or medications they use. Some treatments are highly effective for one type of Parkinson’s, but ineffective for others. In most people, medications gradually lose their effectiveness as the disease progresses.”
Medications for Parkinson’s
“In Parkinson’s, the brain cells that produce a neurotransmitter — a chemical that helps nerves communicate — called dopamine begin to shrink and die. With too little dopamine, the brain cannot facilitate movement as well. Researchers believe parkinsonian symptoms begin when the level of dopamine falls to about half of normal levels. Levels of other neurotransmitters rise, trying to compensate for the lack of dopamine, and this results in more dysfunction.”
“Many medications for parkinsonism are aimed at improving motor symptoms by raising levels of dopamine, replicating the effects of dopamine, or controlling levels of other neurotransmitters. Other medications are taken to treat side effects of Parksinson’s treatments, psychotic symptoms, or low blood pressure that leads to falls soon after standing.”
“Most Parkinson’s medications need to be carefully timed on a daily schedule around meals, bedtime, and waking. Correctly timing medications ensures the most effectiveness, avoids “off” times when symptoms worsen, and avoids dangerous interactions with food or other medications. There are many mobile applications available to track medication timing.”
“Many Parkinson’s medications can cause serious withdrawal symptoms if stopped suddenly. Other drugs must be out of your system for weeks before you start another type of medication. If you want to stop or change medications, always discuss a plan with your doctor for tapering off.”
“The first drugs offered to many people with Parkinson’s are dopaminergic drugs — drugs that work by influencing dopamine levels. Dopaminergic drugs include the combination medication Levodopa/Carbidopa (sold under the brand names Sinemet, Parcopa, and Rytary). Levodopa/Carbidopa is usually taken orally. If Levodopa/Carbidopa is working, but the person still has “off” hours when symptoms are more pronounced, the doctor may recommend Duopa, a system that infuses Levodopa/Carbidopa directly into the small intestine via a small, battery-powered pump.”
“These drugs eventually become less effective and wear off sooner, resulting in “off” time. When Levodopa/Carbidopa begins to lose effectiveness, some people switch to Stalevo (Levodopa/Carbidopa/Entacapone), which adds a third drug to the combination. Entacapone, sold separately under the brand Comtan, is a catechol-O-methyltransferase (COMT) inhibitor. Entacapone is believed to work by increasing the amount of Levodopa that reaches the brain, making Levodopa effective at significantly lower doses. Tasmar (Tolcapone) is another COMT inhibitor. COMT inhibitors can cause liver damage and worsen side effects of Levodopa.”
“Over the long term, Levodopa therapy causes many people to develop dyskinesia — involuntary swaying, writhing, or head-bobbing movements — as a side effect. Amantadine, sold under the brand names Symmetrel and Gocovri, may be prescribed to treat dyskinesia. Amantadine is classified as an antiviral and anti-Parkinsonian drug. It is believed that Amantadine works by increasing the amount of dopamine available in the brain.”
“Some people also develop impulsive or compulsive behaviors — gambling, shopping, or sexual activities — abnormal to their usual habits and personality. Side effects become more likely and worsen with higher dosages. Due to these serious side effects, people with Parkinson’s may choose to delay starting Levodopa until motor symptoms begin to disrupt their daily activities.”
“Dopamine agonists may be given alone or in combination with Levodopa/Carbidopa. Dopamine agonists are believed to work by making brain cells more receptive to dopamine. The dopamine agonist class includes oral drugs Apokyn (Apomorphine), Mirapex and Mirapex ER (Pramipexole), and Requip (Ropinirole). Neupro (Rotigotine) is administered as a skin patch.”
“Serious side effects of dopamine agonists can include dizziness, fainting, and increased risk for heart problems.”
“When dopamine levels drop, levels of another neurotransmitter called acetylcholine rise and cause additional symptoms. Anticholinergics such as Artane (Trihexyphenidyl) and Cogentin (Benztropine mesylate) are believed to work by regulating levels of acetylcholine in the brain. Anticholinergics can cause or worsen memory problems and constipation.”
“Early in the course of Parkinson’s, some people take medications from a class of antidepressant drugs called monoamine oxidase inhibitors (MAOIs). MAOIs are believed to work by preventing the breakdown of dopamine in the brain, thereby increasing the amount of dopamine available. MAOIs are somewhat effective at treating Parkinson’s symptoms, and some may help protect the brain and slow the progress of Parkinson’s disease. MAOIs include Azilect (Rasagiline), Xadago (Safinamide), and Selegiline, sold under the brand names Eldepryl and Zelapar. MAOIs can worsen side effects caused by Levodopa.”
Symptom Management Medications
“Exelon (Rivastigmine) is an acetylcholinesterase inhibitor. Exelon is believed to work by increasing the amount of a neurotransmitter called acetylcholine in the brain.”
“Northera (Droxidopa) treats orthostatic hypotension (dizziness upon standing up) in people with Parkinson’s disease.”
“Psychotic symptoms such as hallucinations, delusions, and paranoia may be caused by Parkinson’s or medications used to treat it. Antipsychotics such as Seroquel (Quetiapine) and Nuplazid (Pimavanserin) may be prescribed to reduce psychotic symptoms. Antipsychotics are believed to work by interfering with serotonin receptors in the brain. Unfortunately, some antipsychotics can worsen Parkinson’s symptoms.”
“Some people with Parkinson’s use medical marijuana to treat symptoms including pain, mood problems, and sleep disorders. Depending on your symptoms, one strain of medical cannabis may provide more benefit than another.”
“Depression and anxiety are common in Parkinson’s, as in all chronic conditions. Some people take antidepressants to improve their mood and outlook. Work with your doctor to choose an antidepressant that will not interact with Parkinson’s medications or other drugs you take.”
Lymph Circulation and WBV
Why is moving so important for PD? The circulatory system has the heart to pump blood, but your lymphatic system has no pump; it is dependent on your movement and contraction of the muscles to allow the lymph fluid to flow. Among other functions, your body depends on the “sewerage system” to detox waste, bacteria/ viruses, toxins, metabolites, and abnormal cells that can lead to various illnesses. If this crucial detoxification drainage system is stagnant or insufficient, it can directly result in elevated oxidative stress among other comorbidities.
“Findings suggest that lymphatic clearance dysfunction is crucial in the onset and development of PD, and might be therapeutically targeted to alleviate age-associated neurodegenerative disorders.”
I set my WBV on 70+ for moving lymph. Dr. Ian says it is great for giving yourself a facial and decreasing wrinkles
“— Hello Dr. Ian here talking about the benefits of whole body vibration with lymph lymph is that clear fluid that oozes out of our skin it’s an extracellular fluid. when we get an abrasion like a rug burn you get that white ooze that’s the lymph. Lymph. is very important to the body. there’s. there’s more lymph fluid in …
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
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.
Impacted by rigidity
Rigidity or stiff or inflexible muscles is one of the main symptoms of Parkinson’s, alongside tremor and slowness of movement. Not everyone will experience all of these symptoms.
In Parkinson’s rigidity is often most noticeable when you move a joint through a circular movement. The movement often feels as if the joint is moving through a number of cogs, known as ‘cogwheel rigidity’.
Some people also experience a constant resistance to motion throughout the entire range of movement, known as ‘lead pipe rigidity’.
Parkinson’s and Rigidity
Rigidity can stop muscles from stretching and relaxing. It can cause:
- Stiff muscles
- Inflexible muscles
- Pain and muscle cramps
- Fixed ‘mask-like’ facial expression
- Inability to swing arm or arms when walking
- Difficulties getting out of chairs, turning over in bed and turning around
- Difficulties with fine movements such as writing or doing up buttons
- Postural change
I spoke to a PwP who said, “I have PD induced COPD and PD induced restrictive lung disease..(rigid diaphragms and chest wall muscles.) PD is suffocating me at 43% vital capacity as my lungs collapse.”
I apologize for this post, but I needed to add it to my index…under aspirational pneumonia.
As one person reported: “In my case due to paralysis of chest muscles and diaphragms my lungs are collapsing from bottom up. about halfway. they fill with fluid at night and i call it waterboarding it feels like drowning and technically it is. Dry Drowning.”
Pulmonary complications remain a primary cause of morbidity and mortality in Parkinson’s disease (PD). Obstructive and restrictive airway deficits are related to disordered motor control of the respiratory musculature. Although this may sometimes lead to overt symptoms, such as stridor and respiratory failure, it more commonly results in silent aspiration and atelectasis, predisposing patients to pneumonia.
……………………………………………….from Pub Med:
Silent aspiration and laryngeal penetration of saliva are common features in PD patients with daily drooling. The presence of hypoesthesia of the laryngeal structures and the lack of protective reflexes in such patients may play a major role in the mechanisms of SLP/SA.
………………………… also from Pub Med
Aspiration pneumonia is a leading cause of death in people with Parkinson disease (PD). The pathogenesis of these infections is largely attributed to the presence of dysphagia with silent aspiration or aspiration without an appropriate cough response. The goal of this study was to test reflex cough thresholds and associated urge-to-cough (UTC) ratings in participants with PD with and without dysphagia.
UTC ratings may be important in understanding the mechanism underlying morbidity related to aspiration pneumonia in people with PD and dysphagia. Further understanding of decreased UTC in people with PD and dysphagia will be essential for the development of strategies and treatments to address airway protection deficits in this population.