I realized there are various symptoms associated with Parkinson’s that I have listed in the index… but not posted any information on them, so I guess I will begin to complete the task.
Sialorrhea, or drooling, is the medical term for an excess spillage of saliva from the mouth. Chronic sialorrhea is when you’ve experienced this drooling for at least 3 months.
Sialorrhea can affect up to 3 out of 4 patients with Parkinson’s disease. In many patients with sialorrhea, it’s not that their salivary glands are making too much saliva — it’s that their neurodegenerstive disease, such as PD, makes it hard to swallow. The saliva builds up or “pools” in the mouth, which leads to drooling.
For me, I think it isn’ really all that hard to swallow. But when I am focusing on a task, I don’t feel the saliva building up or falling from my mouth, until it hits my hands. It is that I don’t think to swallow.
I have learned to keep a cloth in the corner of my mouth, when I retire for the night and the Amandatine is no longer in effect, to wick out the saliva.
I saw an ad today for Myobloc… an injection therapy for resolving the problem, but the possible side effects sound so horrific, I’d have to pass on giving it a try.
I recall the time I went into the Stake President’s office for an interview. As I exited the office, my sweetheart was waiting… and tenderly reached his hand to the corner of my mouth as he said, “Did you know you had egg on your face?”
Really? He couldn’t notice and tell me earlier??!!
Similarly, I’m sure y’all can relate. You go to a parent teacher conference, and there is platter of chocolate sandwich cookies. It always happened to me…. cookie not quite gone, and suddenly the teacher is ready to talk to me… And I’d try to not smile, for fear the chocolate clinging to my teeth would gross the teacher out.
As my drooling has gotten worse, along with a loss of feeling in my face; my grandchildren have begun to gently let me know when my face has extra adornment.
I have been known to say, “I’ll be able to tell if something is helping, if it controls the drooling.” I am VERY PLEASED to report, since the neurologist convinced me to try the prescription Sinemet again, there have been periods of two to three hours at a time, when I haven’t felt a need to wipe at the corners of my mouth!
I know, I will continue to need reminders to clean chocolate from my face, but I’ll be grateful for each small victory, and feel gratitude for the understanding of family and friends.
As taken from the Parkinson’s News Today Newsletter Sep 3, 2019
“Sialorrhea, or drooling, refers to saliva in such excess that it spills from the mouth. This is a common and bothersome symptom of neurological disorders like ALS, cerebral palsy, and stroke, and it affects up to 75% of all Parkinson’s patients.”
“Sialorrhea can be highly distressing for patients and their caregivers and can have a significant, negative impact on quality of life. If left untreated, pooling of saliva can lead to irritation of the skin around the mouth, oral hygiene complications, speech difficulties, and sleep interruption,”
“These impacts can leave patients with compromised physical well being, as well as feeling embarrassed by their condition, causing a lack of confidence and isolation,” Isaacson added.
…………………………………..
Sialorrhea, or drooling, is the medical term for an excess spillage of saliva from the mouth. Chronic sialorrhea is when you’ve experienced this drooling for at least 3 months.
Sialorrhea can affect up to 3 out of 4 patients with Parkinson’s disease. In many patients with sialorrhea, it’s not that their salivary glands are making too much saliva — it’s that their neurodegenerstive disease, such as PD, makes it hard to swallow. The saliva builds up or “pools” in the mouth, which leads to drooling.
For me, I think it isn’t really all that hard to swallow. I don’t feel the build up so I don’t think to swallow. So when am focusing on a task, I don’t feel the saliva building up or falling from my mouth, until it hits my hands. It is that I don’t think to swallow.
I have learned to keep a cloth in the corner of my mouth, when I retire for the night and the Amandatine is no longer in effect, to wick out the saliva.
I saw an ad today for Myobloc… an injection therapy for resolving the problem, but the possible side effects sound so horrific, I’d have to pass on giving it a try
Cranial Nerve 8 – “the auditory vestibular nerve, transmits sound and balance information from the inner ear to the brain.”
“PwP have very poor balance and may experience dizziness. These symptoms become more pronounced if the disease is allow to progress. PwP are often hyper-sensitive to noise and can become averse to listen to music.”
………………………….That explains so much!! I need noise going… either white noise, or background noise from TV or radio, to help me cope with little noises. Even to hear myself eating causes agitation. It is so difficult to keep calm and say nothing, when someone swishes fluid around in their mouth. I hear people swallow. I yelled at a guest, because they were eating popcorn before I could get the noisy fan turned on to drown out the noise. grrrr. now I understand.
Cranial Nerve 9 – “connected to tasting, swallowing, salivary secretions and visceral pain, supplying the tonsils, pharynx, middle ear and the posterior third of the tongue.”
“Loss of sense of taste is strongly associated with PD symptoms, as is dry mouth, thickened saliva and/or dribbling. Visceral pain (dystonia) is also frequently involved.”
…………………………I’m not sure how much ability to taste I might have lost. Just like a person doesn’t realize how impaired their vision is, until they get fitted with a proper lens. But I have noticed the cashews I have always enjoyed seem flavorless. The biggy here, for me, is the drooling. When I am focused on a task, my mouth is relaxed… I forget to swallow, until the drool splashes on my hand.
People frequently say to me…”Smile… Things can’t be that bad.” I can be laughing on the inside, but it is like I forgot to tell my face. It makes me wonder how long I was experiencing symptoms prior to the official diagnosis, When I met with the movement specialist, she told me I had a clasic Parkinson’s mask.
The following paragraphs are excerpts from tomorrow’s post on Perception,
“In addition to PWP (person with parkinson’s) misperceiving themselves they are also not perceived properly by others. This has not been properly studied but the few papers published on this topic indicate that people, including health professionals, have a more negative impression of PWP they haven’t met based purely on their facial expression, viewing them as depressed, angry, less socially involved, less interested and less pleasant based on how “masked” their facial expression is. These impressions were completely unrelated to what the PWP actually was like. This unfortunate problem may underlie difficulties PWP experience relating to people who don’t know them. “
“…………This means that they have fewer spontaneous movements than other people, which is readily seen in the blink rate. PWP blink less than normal people, contributing to their facial “staring” expression. They also swallow less than others, which is why saliva pools in their mouths, leading to drooling. “
Describes me exactly. I’m pretty sure my body produces extra saliva… I feel like a drooling machine.
When I first told a friend I had been given the diagnosis of Parkinson’s, the first thing she said was… “I’m sorry. My dad had Parkinson’s… he died by choking to death… my mother was feeding him.”
Yiikes! Being aware of the possibility of such an outcome gave me the impetus to be proactive. With the recommendation of my Primary doctor I got a vaccination for pneumonia. Additionally, I have read : “Dysphagia is the main cause of aspiration pneumonia and death in Parkinson disease (PD) with no established restorative behavioral treatment to date.”
“Dysphagia is a disorder that causes difficulty in swallowing and successfully moving food from the mouth to the stomach. Other signs and symptoms associated with dysphagia may include: (I bolded the ones I frequently experience)
Having pain while swallowing (odynophagia)
Being unable to swallow
Having the sensation of food getting stuck in your throat or chest or behind your breastbone (sternum)
Drooling
Being hoarse
Bringing food back up (regurgitation)
Having frequent heartburn
Having food or stomach acid back up into your throat
Unexpectedly losing weight
Coughing or gagging when swallowing”
“Difficulty swallowing can lead to:
Malnutrition, weight loss and dehydration. Dysphagia can make it difficult to take in adequate nourishment and fluids.
Aspiration pneumonia. Food or liquid entering your airway when you try to swallow can cause aspiration pneumonia, because the food can introduce bacteria to the lungs.
Choking. When food becomes impacted, choking can occur. If food completely blocks the airway, and no one intervenes with a successful Heimlich maneuver, death can occur.”
Remember I said I want to be proactive?… the literature says: “no established restorative behavioral treatment to date.” But… in my research, I found a study being done in California, using a device to determine the impact it would have on swallowing for Parkinson’s participants. So perhaps in the future…
I’d had an irritating cough which I’d endured for years until in this last year was resolved when an ENT dr prescribed stronger doses of meds for gurd and post nasal drip than previous doctors had prescribed. I recently expressed my concerns to my primary care doctor who is following my Parkinson’s… “Perhaps I should have kept the cough, because it provided exercise to my lungs?” His adamant view was ‘NO! a cough is indicative of an irritant… which should be eliminated. He then demonstrated several breathing exercises he recommended as a better way to increase my lung strength. 🙂
This past Wednesday, my husband, John, had a hip replacement surgery, and as a precaution, for his lung health he received a spirometer. [photo below] the instructions were to exhale, and then after placing the mouthpiece in your lips, INHALE trying to elevate the floats. John could raise the float on the left till it was totally into the clear space labeled: ‘Good’, ‘Better’, ‘Best’. The float on the right would rise to the 2500 line.
When I opted to try it, the float on the left moved only 1/3rd the way up into the ‘Good’, ‘Better’, ‘Best’ clear space. The float on the right came up to 1750. (the potential shown goes up to 5000)
VOLDYNE 5000 Incentive spirometer. The goal of this device is to open the air sacs in your lungs after surgery, making it easier to breath deeply and keep your lungs clear.
My goal is to incorporate the instructions the nurse explained to John… Do three breaths at a time, at least ten times throughout the day. She suggested when watching tv, everytime an advertisement comes on, take three breaths.
Then, being curious, I went to the internet to see if I could find other tools with a goal to exercise for breathing, and I found the expand-a-lung [pictured below] But NO therapys to address the ability to swallow, unless you call thickened beverages a therapy. However… When I did the LOUD therapy for my soft voice, I was told it would also strengthen my swallow.
The Expand-A-Lung® inspiratory/expiratory breathing resistance trainer is a breakthrough product for improving endurance through better breathing and lung function. Research supports that this breathing exercise significantly improves the strength of respiratory muscles, and increases the volume of lung oxygen intake. It is also an excellent exercise for COPD patients to get rid of the trapped air in the alveoli for better gas exchange. This will surely improve breathing and reduce shortness of breath.
I belong to an online community of Parkies and their care givers. It is a great source for information. [The Invigorated Community] I wanted to share a bit of their upbeat positivity with you. Yesterday, a person asked if others were experiencing brain fog. What follows is a short bit of the responses:
M… Yes, they list concentrating as a symptom. But I think it can get ‘mixed up’ with other symptoms such as depression. And the fact is we’re all getting older and that’s just a fact of life. Wait…..what was your question?
M… Sorry, I don’t mean to down play it. But, We do need to remember to keep a sense of humor.5M
D… yes we do for sure. I must say, in the morning when I am shaving I laughed, every time I move the razor, I get really bad tremors in left hand, and when I stop, the tremors stop. I have fun with it. 😂1M
M… It also saves the investment in an electric toothbrush.
D… a sense of humor is very important I think. Some really cool things are starting to happen, like a little bit of a drooling from the left hand side of my mouth when I am taalking… People ask me, are you okay? I say sure I’m feeling fine, seems like I have too much saliva, would you like some?😁
Standing up to Parkinson's 