I saw reviews on the Urban Poling Activator Poles on two different Blogs by PWP. So I Googled it, and watched YouTube ‘how to use walking poles’ by three different companies. I can see how using the poles correctly could benefit me, as I continue to do fast walking. Plus I can see my sweetheart benefiting from using the poles as well.
Unique Components of the ACTIVATOR Poles: Button-Locking System: An easier and safer method vs turning locking systems. New – Ergonomic CoreGrip (patented): Designed for improving core strengthening while providing greater comfort and supporting the wrist in a neutral position to reduce strain. Wide Ledge instead of a Strap: To reduce the risk of injuries. A study by Knobloch et al. (2006) found the highest rate of injury for Nordic walking is when the person is still attached to the poles during a fall. Bell Shaped Tips: Provide greater stability than boot shaped tip 3 Anti-Vibration Features: Reduce vibration and impact on joints Carbide Steel Tip: Provides stability on slippery conditions and on trails & beaches. Telescoping: 4′ to 6′ (121 to 182 cm). Poles are collapsible for storage & travel New – ACTIVATOR2 Poles designed for taller individuals up to 6′ 4 and collapses shorter for travel 25″
The site suggested that rehab professionals are using the poles in place of canes and to reduce/delay the use of walkers.
The poles are very similar to Nordic Walking Poles, but the techniques taught for using them are a bit different. The hand shake goes to a more bent elbow and the poles don’t go behind you. https://urbanpoling.com
I purchased The companion combo, which was a bargain. Now my sweetheart can go poling with me. They arrived already (Merry Christmas to us) We watched the videos provided and adjusted our new poles to the correct height for a 90 degree angle at the elbow, and tried to practice the pole placement coordinated with arm swing and foot placement. First day we went out to walk on the pavement in front of our house. by the end of our little session, my husband was able to do it. Due to Mr. PD, my coordination isn’t so cooperative, so I will take longer… but I’m not a quitter.
We have been on three walks now. I’m slowly getting better, but I still have to watch my feet (a no-no) and concentrate. or I am stepping out on the same side as the pole. About ready to go out again. The weather is beautiful in central Florida… 78 degrees right now.. I’d better go before it gets too much warmer.
There are links included in her letter. I’d encourage you to take time to view them. Most of them seemed to be YouTube – Ted talks.
IF I could turn back the clock and write a letter to every single one of my clients on the day they were diagnosed with Parkinson’s, this is what the letter would say.” (she is a physical therapist)
“Dearest Friend,
Today likely didn’t go the way you planned nor wanted it to go. Whether you’re feeling confused, frightened, angry, or apathetic, I want you to know I’m here for you. I know a new diagnosis of Parkinson’s can knock you for a loop, but consider this letter an invitation to a new chapter of your life – one that is much brighter than you may be imagining at this moment.
I think the tendency is for someone to say “I’m sorry” right about now, but I’m going to hold off on that lingo because I have a feeling you’re likely not looking for sympathy. Instead, I want to offer my support. Please don’t consider this a hand-out (I know you’re not looking for that either) – I just ask that you consider what I’m about to say with a brave and open heart. Many people that I care about have stood where you stand now with questions, looking for hope. I’ve learned a lot watching them go through this process and, while I won’t pretend to know all the answers, what follows is my best advice for the next chapter of your life…
1 You are Not broken.
It may be your default to take this diagnosis as a sign that your body is broken or even revolting against you but your body is simply telling you it needs serious TLC. It’s likely been telling you this for a while but up until now it’s been easier to ignore than pay attention to. Today your body shouted loud enough for you to hear it so now begins the journey of listening and tuning in to what it’s telling you. Your body is resilient and always seeking health and repair – you just need to give it what it’s asking for.
2 Your Future has Not been decided for you.
There will be naysayers and fear mongers, but a diagnosis of Parkinson’s is just that – a diagnosis. It’s a label for a collection of symptoms, not your prognosis or a crystal-ball prediction of what your future holds. It’s okay to believe you’ll get better, not worse, and that you’ll never need a wheelchair. This isn’t denial if this belief is paired with deliberate action on your part to improve your health and maximize your vitality. Your future is in Your hands, no one else’s, and your attitude is everything.
3 Don’t Hide.
Your instinct is likely to hide your diagnosis and pretend all is well. The thought of walking into a Parkinson’s support group may make you want to cry – after all, who wants to be face-to-face with a future they’d rather not confront? Luckily, Parkinson’s symptoms aren’t contagious! Joking aside, the Parkinson’s community is incredibly strong and supportive and is an amazing resource. Just because others present with certain symptoms doesn’t mean that’s your fate and learning from their experience is valuable beyond measure. Find a local support group, meet-up, or just another like-minded person with Parkinson’s (PWP) who can act as a confidant through this process. There are many online support groups and you’ll definitely be able to find one that matches your current situation and attitude. Seek out resources that build you up and have a positive impact. Remember, there is strength in numbers and no one can (or should) go at this alone. JOIN OUR TRIBE – SIGN UP FOR OUR NEWSLETTER
4 Start Exercising. Now.
The evidence is strong – regular exercise is neuroprotective (meaning it protects your brain) and promotes neurogenesis (meaning it helps develop new connections in your brain). The buzzword is “neuroplasticity” which means your brain is always molding and changing based on what you ask it to do. So, challenge it (mentally and physically) to change it for the better. The absorption and utilization of dopamine, the neurotransmitter that is lacking in Parkinson’s, is significantly boosted with a challenging and frequent exercise regime. The bottom line: You shouldn’t miss a day of exercise in the same way you wouldn’t miss a day of taking your medication. Yes, it’s that important! If you’re not an exerciser.. well, you are now!
5 Small changes = Huge difference.
Observe your diet. We swallow food just like we swallow pills – why expect that one will have an affect on your symptoms and the other will not? Toxins come in many forms – pesticides, hormones, pollution, food additives and sugar, to name a few – and they burden your immune system and brain. Eat as organic and close to nature as you can afford. Explore supplements but realize you can’t supplement away a bad diet. (Healthy) fats are your friend. Find activities that calm your mind and fill your soul – do them daily. Meditate. Laugh. Prioritize sleep – this is where your brain heals and flushes out toxins. Treating your body like a temple will dramatically affect the way you move, think, and feel.
6 Take Action Now, don’t wait.
You may feel you’re “not that bad”. Your symptoms are minimal and you feel you can pretend they don’t exist and for a while, yes, you’ll be able to go on as if nothing’s ever happened. Your urge to “stay normal” in the eyes of others for as long as possible is strong – I get it. However, when it comes to Parkinson’s there is no waiting, whether you have symptoms or not. Taking immediate action to uplevel your exercise program, manage your stress, regulate your sleep cycle, and overhaul your nutrition is crucial to preserving your precious brain and is the only option. Medication will help your symptoms and DBS may reduce your tremors, but these are simply masking the dysfunctions in your system, not fixing them. Very similar to the way money compounds in your bank account – not changing your habits now will only compound your problems down the line. Starting today, put yourself first and make your health and future your top priority.
7 Find Acceptance to Dissolve Fear
Accepting where you are is different than surrendering – it inspires action instead of passivity. Embrace where you are in this moment. You may have heard the saying, “What you resist, persists”, so don’t push away your feelings. Instead, feel them fully. Cry.. Scream.. Laugh.. By being here, right now, you’ll find that you’re OK. Fear has no place here because you’re not in any immediate danger. The fear comes when you leave this moment and your mind floats into a fabricated future. Stay present and focus on what you can do in this moment. I believe in you.
“There is something you must always remember: You are braver than you believe, stronger than you seem, and smarter than you think.
There are links included in her letter. I’d encourage you to take time to view them. Most of them seemed to be YouTube – Ted talks.
IF I could turn back the clock and write a letter to every single one of my clients on the day they were diagnosed with Parkinson’s, this is what the letter would say.” (she is a physical therapist)
“Dearest Friend,
Today likely didn’t go the way you planned nor wanted it to go. Whether you’re feeling confused, frightened, angry, or apathetic, I want you to know I’m here for you. I know a new diagnosis of Parkinson’s can knock you for a loop, but consider this letter an invitation to a new chapter of your life – one that is much brighter than you may be imagining at this moment.
I think the tendency is for someone to say “I’m sorry” right about now, but I’m going to hold off on that lingo because I have a feeling you’re likely not looking for sympathy. Instead, I want to offer my support. Please don’t consider this a hand-out (I know you’re not looking for that either) – I just ask that you consider what I’m about to say with a brave and open heart. Many people that I care about have stood where you stand now with questions, looking for hope. I’ve learned a lot watching them go through this process and, while I won’t pretend to know all the answers, what follows is my best advice for the next chapter of your life…
#1 You are Not broken.
It may be your default to take this diagnosis as a sign that your body is broken or even revolting against you but your body is simply telling you it needs serious TLC. It’s likely been telling you this for a while but up until now it’s been easier to ignore than pay attention to. Today your body shouted loud enough for you to hear it so now begins the journey of listening and tuning in to what it’s telling you. Your body is resilient and always seeking health and repair – you just need to give it what it’s asking for.
#2 Your Future has Not been decided for you.
There will be naysayers and fear mongers, but a diagnosis of Parkinson’s is just that – a diagnosis. It’s a label for a collection of symptoms, not your prognosis or a crystal-ball prediction of what your future holds. It’s okay to believe you’ll get better, not worse, and that you’ll never need a wheelchair. This isn’t denial if this belief is paired with deliberate action on your part to improve your health and maximize your vitality. Your future is in Your hands, no one else’s, and your attitude is everything.
#3 Don’t Hide.
Your instinct is likely to hide your diagnosis and pretend all is well. The thought of walking into a Parkinson’s support group may make you want to cry – after all, who wants to be face-to-face with a future they’d rather not confront? Luckily, Parkinson’s symptoms aren’t contagious! Joking aside, the Parkinson’s community is incredibly strong and supportive and is an amazing resource. Just because others present with certain symptoms doesn’t mean that’s your fate and learning from their experience is valuable beyond measure. Find a local support group, meet-up, or just another like-minded person with Parkinson’s (PWP) who can act as a confidant through this process. There are many online support groups and you’ll definitely be able to find one that matches your current situation and attitude. Seek out resources that build you up and have a positive impact. Remember, there is strength in numbers and no one can (or should) go at this alone. JOIN OUR TRIBE – SIGN UP FOR OUR NEWSLETTER
#4 Start Exercising. Now.
The evidence is strong – regular exercise is neuroprotective (meaning it protects your brain) and promotes neurogenesis (meaning it helps develop new connections in your brain). The buzzword is “neuroplasticity” which means your brain is always molding and changing based on what you ask it to do. So, challenge it (mentally and physically) to change it for the better. The absorption and utilization of dopamine, the neurotransmitter that is lacking in Parkinson’s, is significantly boosted with a challenging and frequent exercise regime. The bottom line: You shouldn’t miss a day of exercise in the same way you wouldn’t miss a day of taking your medication. Yes, it’s that important! If you’re not an exerciser.. well, you are now!
#5 Small changes = Huge difference.
Observe your diet. We swallow food just like we swallow pills – why expect that one will have an affect on your symptoms and the other will not? Toxins come in many forms – pesticides, hormones, pollution, food additives and sugar, to name a few – and they burden your immune system and brain. Eat as organic and close to nature as you can afford. Explore supplements but realize you can’t supplement away a bad diet. (Healthy) fats are your friend. Find activities that calm your mind and fill your soul – do them daily. Meditate. Laugh. Prioritize sleep – this is where your brain heals and flushes out toxins. Treating your body like a temple will dramatically affect the way you move, think, and feel.
#6 Take Action Now, don’t wait.
You may feel you’re “not that bad”. Your symptoms are minimal and you feel you can pretend they don’t exist and for a while, yes, you’ll be able to go on as if nothing’s ever happened. Your urge to “stay normal” in the eyes of others for as long as possible is strong – I get it. However, when it comes to Parkinson’s there is no waiting, whether you have symptoms or not. Taking immediate action to uplevel your exercise program, manage your stress, regulate your sleep cycle, and overhaul your nutrition is crucial to preserving your precious brain and is the only option. Medication will help your symptoms and DBS may reduce your tremors, but these are simply masking the dysfunctions in your system, not fixing them. Very similar to the way money compounds in your bank account – not changing your habits now will only compound your problems down the line. Starting today, put yourself first and make your health and future your top priority.
#7 Find Acceptance to Dissolve Fear
Accepting where you are is different than surrendering – it inspires action instead of passivity. Embrace where you are in this moment. You may have heard the saying, “What you resist, persists”, so don’t push away your feelings. Instead, feel them fully. Cry.. Scream.. Laugh.. By being here, right now, you’ll find that you’re OK. Fear has no place here because you’re not in any immediate danger. The fear comes when you leave this moment and your mind floats into a fabricated future. Stay present and focus on what you can do in this moment. I believe in you.
“There is something you must always remember: You are braver than you believe, stronger than you seem, and smarter than you think.
When I joined The Invigorated Community on line discussion group for those diagnosed with Parkinson’s and their caregivers, I received this message. IT has been worthwhile for me to re-read.
I met the woman who changed my life forever one month into my professional physical therapy career.
She walked, slowly and timidly, back to my treatment room for her initial evaluation with very little trace of emotion on her face.
Once she was settled comfortably in her chair, she looked up and said:
“When I was diagnosed with Parkinson’s disease, my doctor told me I’d get worse over time and likely be in a wheelchair in 5 years. That was 3 years ago.
Since then I’ve stopped walking with my husband in the evenings because I feel so unsteady and I’m terrified of falling again. I’m tired all the time. My back and shoulders ache and my right arm is so weak that I had to give up doing my own laundry and cleaning the house like I used to.
I want to be able to take care of myself and get back to doing the things I used to do, but Parkinson’s won’t let me. I honestly don’t know what you can do for me, but my doctor told me I should come, so here I am.”
This was the first person I had ever treated with a Parkinson’s diagnosis and her story immediately sparked a fire in my heart.
How could her doctor be so sure of her fate?
So, I asked her to give me 30 days to prove to her that she didn’t have to succumb to the disempowering belief that there was nothing to do but take her medications, get her affairs in order, and pray for a cure.
Fortunately, she agreed.
We spent 3 days a week together, and she worked hard . Bike intervals… balance pads… walking drills… squats (so many squats!)… twisting and bending in all directions… and, of course, exercise homework for the days she didn’t see me…
Until we reached our 30-day mark.
Not only was she back to walking a mile each evening with her husband, but her back and shoulder pain was also gone. She had enough energy to do her laundry and was regularly hosting their family and friends at their home she was able to clean herself.
She looked at me, smiling, and said:
“I never thought I’d be able to do these things again. You gave me my life back.”
Heart . Explosion .
Immediately I knew that this was where I needed to be.
I don’t tell you this story to brag about myself or to proclaim myself some mystical healer.
I tell you because I want you to know this:
If you’ve been told that there’s nothing you can do but take your medication, get your affairs in order, and wait for a cure, you don’t have to believe it.
What follows is a letter I wrote that I wish I could have given you on the day you were diagnosed with Parkinson’s disease.
Big hugs,Dr. Sarah King, PT, DPT Founder of Invigorate PT & Wellness
She begins her letter
“If I could turn back the clock and write a letter to every single one of my clients on the day they were diagnosed with Parkinson’s, this is what the letter would say.”
“Dearest Friend, [Her words are so uplifting and beneficial… check back tomorrow, for the ‘rest of the story’.]
1 cup flour (can use whole-wheat, or oat flour instead)
1/2 teaspoon baking soda
1/4 teaspoon salt
1/8 cup Pyure Stevia
1/2 cup sliced almonds
Zest of 1 lemon
Juice of 1 lemon
2 tablespoons olive oil
1 egg
Coconut oil (or other oil, for pan)
Cheesecake & Fruit Topping:
1/8 cup Pyure Stevia
8 ounces cream cheese, room temperature
1/2 teaspoon vanilla extract
1 egg
2 tablespoons chia seeds
1 (16 ounce) package frozen mixed berries
Honey/sugar/almonds/chocolate, to drizzle or sprinkle on top
Directions:
If using frozen berries, place them at room temperature to thaw 2-3 hours prior to making the cheesecake. You will also want the cream cheese and egg at room temperature.
Crust
Preheat oven to 375°F, and grease a 9-inch pie pan with coconut oil.
Combine flour, baking soda, salt, sweetener, almond slices, and zest of one lemon in a medium mixing bowl. Stir well.
Add lemon juice, egg, and oil to the dry mixture. Work these ingredients in, forming a flaky dough.
Add dough to the pie pan, and work into a crust lining the bottom and sides of the pan.
Bake for 20 minutes at 375°F, then allow the crust to cool slightly (5 minutes or more) before adding filling. Keep oven preheated to 375°F.
Filling (Cheesecake and Berry Topping)
Combine sweetener, cream cheese, vanilla, and egg in a medium mixing bowl. Using an electric mixer or blender, mix until there is a smooth consistency. If you use frozen berries and have berry juice, the juice (up to 2-3 tablespoons) can be added to the cream cheese mixture.
Add a thin layer of the cream cheese filling to the pre-made crust.
Pour chia seeds over the thin layer, creating a chia seed layer
Add the rest of the cream cheese filling to the crust, then place in the oven
Bake for 20 minutes at 375°F then reduce heat to 350°F and bake an additional 15 minutes. Check that the cheesecake is cooked through by testing with a knife or toothpick (it should come out clean). You’ll also see that the filling no longer wiggles when moving the pan if it’s cooked through.
Arrange the berries on top of the cheesecake. These can be added as soon as the cheesecake is pulled out of the oven.
Drizzle honey (or sugar, almonds, chocolate) on top, as desired.
Cool in a refrigerator for at least 2-3 hours.
I want to offer a disclaimer. I do not remember where I found this recipe, and I have not tried it yet, but I thought it sounded and looked spectacular. I found it in my drafts.
Last time I went to the neurologist, I told him, “I do not see any difference between when I take the carb/Levo or don’t take it” He told me to discontinue taking it and “You will see”. Well, I do not see any difference, and I think this article explains why. I intend to take a copy of the article, highlighting the part I have in Bold Blue and underlined. So I am not taking any more dopamine for the immediate future.
—————–
“Using advanced computer models, neuroscience researchers at the University of Copenhagen have gained new knowledge about the complex processes that cause Parkinson’s disease. The findings have recently been published in the Journal of Neuroscience.“
“The defining symptoms of Parkinson’s disease are slow movements, muscular stiffness and shaking. There is currently no cure for the condition, so it is essential to conduct innovative research with the potential to shed some light on this terrible disruption to the central nervous system that affects one person in a thousand in Denmark.”
“Dopamine is an important neurotransmitter which affects physical and psychological functions such as motor control, learning and memory. Levels of this substance are regulated by special dopamine cells. When the level of dopamine drops, nerve cells that constitute part of the brain’s ‘stop signal’ are activated.”
“This stop signal is rather like the safety lever on a motorised lawn mower: if you take your hand off the lever, the mower’s motor stops. Similarly, dopamine must always be present in the system to block the stop signal. Parkinson’s disease arises because for some reason the dopamine cells in the brain are lost, and it is known that the stop signal is being over-activated somehow or other. Many researchers have therefore considered it obvious that long-term lack of dopamine must be the cause of the distinctive symptoms that accompanies the disease. However, we can now use advanced computer simulations to challenge the existing paradigm and put forward a different theory about what actually takes place in the brain when the dopamine cells gradually die,” explains Jakob Kisbye Dreyer, Postdoc at the Department of Neuroscience and Pharmacology, University of Copenhagen.”
A thorn in the side
“Scanning the brain of a patient suffering from Parkinson’s disease reveals that in spite of dopamine cell death, there are no signs of a lack of dopamine — even at a comparatively late stage in the process.”
“The inability to establish a lack of dopamine until advanced cases of Parkinson’s disease has been a thorn in the side of researchers for many years. On the one hand, the symptoms indicate that the stop signal is over-activated, and patients are treated accordingly with a fair degree of success. On the other hand, data prove that they are not lacking dopamine,” says Postdoc Jakob Kisbye Dreyer.”
Computer models predict the progress of the disease
“Our calculations indicate that cell death only affects the level of dopamine very late in the process, but that symptoms can arise long before the level of the neurotransmitter starts to decline. The reason for this is that the fluctuations that normally make up a signal become weaker. In the computer model, the brain compensates for the shortage of signals by creating additional dopamine receptors. This has a positive effect initially, but as cell death progresses further, the correct signal may almost disappear. At this stage, the compensation becomes so overwhelming that even small variations in the level of dopamine trigger the stop signal — which can therefore cause the patient to develop the disease.”
The new research findings may pave the way for earlier diagnosis of Parkinson’s disease.
Dysphagia is common in Parkinson’s disease (PD) and causes significant morbidity and mortality. PD dysphagia has usually been explained as dysfunction of central motor control, much like other motor symptoms that are characteristic of the disease. However, PD dysphagia does not correlate with severity of motor symptoms nor does it respond to motor therapies. It is known that PD patients have sensory deficits in the pharynx, and that impaired sensation may contribute to dysphagia. However, the underlying cause of the pharyngeal sensory deficits in PD is not known. We hypothesized that PD dysphagia with sensory deficits may be due to degeneration of the sensory nerve terminals in the upper aerodigestive tract (UAT). We have previously shown that Lewy-type synucleinopathy (LTS) is present in the main pharyngeal sensory nerves of PD patients, but not in controls. In this study, the sensory terminals in UAT mucosa were studied to discern the presence and distribution of LTS. Whole-mount specimens (tongue-pharynx-larynx-upper esophagus) were obtained from 10 deceased human subjects with clinically diagnosed and neuropathologically confirmed PD (five with dysphagia and five without) and four age-matched healthy controls. Samples were taken from six sites and immunostained for phosphorylated α-synuclein (PAS). The results showed the presence of PAS-immunoreactive (PAS-ir) axons in all the PD subjects and in none of the controls. Notably, PD patients with dysphagia had more PAS-ir axons in the regions that are critical for initiating the swallowing reflex. These findings suggest that Lewy pathology affects mucosal sensory axons in specific regions of the UAT and may be related to PD dysphagia.
Dysphagia is very common in patients with Parkinson’s disease (PD) and often leads to aspiration pneumonia, the most common cause of death in PD. Unfortunately, current therapies are largely ineffective for dysphagia. As pharyngeal sensation normally triggers the swallowing reflex, we examined pharyngeal sensory nerves in PD for Lewy pathology. Sensory nerves supplying the pharynx were excised from autopsied pharynges obtained from patients with clinically diagnosed and neuropathologically confirmed PD (n = 10) and healthy age-matched controls (n = 4). We examined: the glossopharyngeal nerve (IX); the pharyngeal sensory branch of the vagus nerve (PSB-X); and the internal superior laryngeal nerve (ISLN) innervating the laryngopharynx. Immunohistochemistry for phosphorylated α-synuclein was used to detect potential Lewy pathology. Axonal α-synuclein aggregates in the pharyngeal sensory nerves were identified in all of the PD subjects but not in the controls. The density of α-synuclein-positive lesions was significantly greater in PD subjects with documented dysphagia compared to those without dysphagia. In addition, α-synuclein-immunoreactive nerve fibers in the ISLN were much more abundant than those in the IX and PSBX. These findings suggest that pharyngeal sensory nerves are directly affected by the pathologic process of PD. This anatomic pathology may decrease pharyngeal sensation impairing swallowing and airway protective reflexes, thereby contributing to dysphagia and aspiration.
Parkinson disease (PD) is a multiple system neurodegenerative disorder characterized by a large number of motor and non-motor features. In addition to the hallmark symptoms (resting tremor, bradykinesia, rigidity, and postural instability), PD patients frequently exhibit a number of secondary motor symptoms such as dysphagia, dysarthria, sialorrhoea, and non-motor symptoms including autonomic dysfunction and sensory abnormalities (1). Among these, impaired swallowing and voice/speech represent a large clinical problem in PD as approximately 90% of patients with PD develop these disorders (2, 3). It is estimated that there are about 8 million or more people in the world each year that have or will have swallowing and speech disorders (3). Unfortunately, treatment outcomes for these disorders have been disappointing. Although anti-PD drugs and deep brain stimulation have significant therapeutic effects on limb motor functions, their effects on swallowing in PD are less impressive, and in some cases, adverse (3–5). Importantly, 25% to 50% of PD patients experience tracheal penetration/aspiration (6–8). Aspiration pneumonia is the leading cause of death among PD patients with dysphagia (9–11). As dysphagia is a challenging clinical issue, an urgent need exists to understand its pathophysiological mechanism for the development of effective therapies.
Despite the extremely high incidence of dysphagia in PD, the exact mechanism of this deficit remains unknown. Oropharyngeal swallowing involves a complex integration of motor and sensory modalities, many of which may be compromised in PD. Therefore, oropharyngeal dysphagia and associated aspiration can be caused by dysfunction of the motor and/or sensory nervous system controlling the upper aerodigestive tract. It is well known that the sensory branches of the glossopharyngeal nerve (cranial nerve IX) and vagus nerve (cranial nerve X) are major contributors to sensory innervation of the pharynx (12) and play important roles in reflex initiation and modulation of patterned motor behavior (13). We hypothesized that oropharyngeal dysphagia may be associated, at least in part, with sensory dysfunction as a result of PD-induced nerve damage. An important aspect of understanding oropharyngeal dysphagia and aspiration is to determine whether the sensory nervous system of upper aerodigestive tract is affected in PD as peripheral sensory mediation of the pharynx and larynx is crucial for triggering swallowing and upper airway protective reflexes.
I have been trying to correct some errors on my blog, and have found random drafts that I never posted. So, PLEASE forgive the randomness of the posts. I am trying to put them into categories and into the index, so there is a method to my madness.
People with Parkinson’s disease and other Movement Disorders often develop swallowing disorders, also referred to as dysphagia. A swallowing disorder can affect your ability to move food in your mouth or it can affect the ability of your muscles to successfully and safely transport food and liquid from the back of your throat to your esophagus. Dysphagia can often result in ‘coughing or choking’ with meals. This coughing with meals is often a sign of penetration and/oraspiration of food and liquids, this means food or liquid is entering your airway (instead of your esophagus). If too much material enters the airway you can develop something called aspiration pneumonia a type of chest infection that can potentially be life threatening.
Here at the University of Florida (UF) we have been researching new swallowing therapy techniques. One technique which we have studied here at UF is Expiratory Muscle Strength Training or EMST with the EMST 150. This device was developed here at the University of Florida by Dr. Christine Sapienza, Dr. Paul Davenport and Dr. Daniel Martin. The EMST device (see below) houses a calibrated, one-way, spring-loaded valve to exercise the expiratory and submental muscles – these are muscles important for breathing out forcefully, coughing, and swallowing. The valve blocks the flow of air until enough pressure is produced. Once the valve opens, air flows through the device. The treatment lasts four to five weeks, with participants completing 25 breaths a day (5 sets of 5 repetitions) five days per week. We call this the ‘power of 5’. During the five weeks the device is reset as the participant gets stronger.
We recently completed a study testing the effects of EMST on swallowing function in people with Parkinson’s disease. We found that patients with PD who used the EMST device for four 4 weeks had improvement in their swallowing safety (less penetration or aspiration) as compared to patients who had a placebo device. We have also learned that EMST can improve cough function. This is important because when food or liquid enters the airway, you need a strong cough to get it out. In our clinic we often use EMST, in addition to other swallowing therapies, to improve cough and swallowing function in our patients.
I have noticed every since I began taking the Amantadine, in April of 2020, I find myself humming… a LOT… when I am working in the kitchen, or in the garden, or doing my fast walking or strolling through the grocery isles (wearing a mask and social distancing, of course).
I feel like my voice is stronger than it was before I began the humming. But I can’t be certain it is just the humming that triggered the improvement, because I have faithfully been taking the High doses of B1 Thiamine since February of 2020. My mentor in the B1 therapy told me as she has continued, to take it, all of her symptoms have diminished, including her voice volume, which has normalized
I need to be cautious and intentional with my swallowing, and use yogurt or applesauce consistency to aid me to float the nutritional supplements that I take.
I was motivated to share this with you because of a 200 voice Parkinsons Virtual choir will be performing tomorrow… Saturday, November 7th (6:30pmCT/7:30pmET)
Karl Robb said, “Please spend an incredibly special 30-minutes to learn about this outstanding and motivating day! I hope that you will share this with anyone that you know who might need help with their speech and swallowing!”
I invite you to join me and my friends at Parkinson Voice Project (PVP) for a joyful celebration of a momentous achievement of their 15th anniversary! I have experienced tremendous benefit from the exercises and protocol developed by Samantha Elandary and her mentor, the late Dr. Daniel R. Boone.
Parkinson Voice Project’s 15th Anniversary Celebration on Saturday, November 7th (6:30pmCT/7:30pmET) will consist of a 30-minute mini-documentary about how Parkinson’s affects speech and swallowing and what Parkinson Voice Project is doing to help. The event will end with the performance of our “Global Virtual Choir” that consists of 225 people with Parkinson’s and their family and friends singing with INTENT!
I have been trying to correct some errors on my blog, and have found random drafts that I never posted. I am trying to put them into categories and into the index, so there is a method to my madness.
I found two posts about swallowing that I thought were of value, so they are scheduled to come out in the next two days.
I read an article that was responding to the question: How do you teach your children to have a grateful heart?
I think the author’s advice is equally valid for PwP
Express gratitude yourself… Give thanks in Prayer… AND…
Allow for Both Pain & Praise
“Just like adults, children experience hard times. Teaching them to recognize the hand of God in their life is most important for when trials come. When your child has a bad day or is facing a challenge, consider setting aside a time to be with them. Set a timer and let them express their pain and talk about it however they’d like until the timer goes off. If your child is especially sensitive, give them more time if they need or wait for a moment to switch mindsets. Then, ask your child to try very hard to think of things they can learn from what they’re experiencing. Have them list off what they still have to be grateful for. We can experience both pain and praise for God at the same time. An activity like this one can be the first step to learning this principle.”
Standing up to Parkinson's 