Dysphagia in Parkinsonism

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.

Aware in Care

After I’d experienced several choking episodes, as a result of my Parkinsonism symptoms, I followed my primary care doctor’s recommendation to get a pneumonia vaccination. I’d read: “When thoroughly assessed it was found that the most common cause of death in people with Parkinson’s Disease was Pneumonia, which was the cause of death in 45% of people.”

Being proactive, when I learned about the Aware in Care Kit, I requested one. And I received it yesterday. The link is included below, for all proactive Parkies. Additionally, there are links to download the action plan, the medical alert card, medication card, fact sheet and reminder slip,,, in case you need any of them prior to the arrival of your bag. This is from the web:

“The Parkinson’s Foundation launched the Aware in Care campaign in 2011 to help people with Parkinson’s disease (PD) get the best care possible during a hospital stay. According to a recent study, three out of four people with Parkinson’s do not receive medications on time when staying in the hospital. With more frequent hospital visits and a high sensitivity to the timing and dosing of PD medications, people with Parkinson’s face great risks in the hospital.”

“To protect, prepare and empower people with Parkinson’s before, during and after a hospital visit, we developed the free Aware in Care kit with tools and information to share with hospital staff during a planned or emergency hospital visit.”

“Aware in Care kits can be requested from your local Parkinson’s Foundation Chapter or Center of Excellence. If you do not live in an area with a Chapter or center, you can order a kit online.”

Kit Contents

‘Each Aware in Care kit is filled with useful tools and information to help a person with Parkinson’s during the next hospital visit. Each kit includes:’

Aware in Care Kit

“Pack your bag with your Parkinson’s medication and materials below.”

Hospital Action Plan

“Read about how to prepare for your next hospital visit — whether it is planned or an emergency. “
Download the action plan >>

Parkinson’s Disease ID Bracelet

“Wear your bracelet at all times in case you are in an emergency situation and cannot communicate.”

Medical Alert Card

“Fill in your card with emergency contact information and place in your wallet.”
Download the medical alert card >> 

Medication Form

“Complete this form and keep copies in your kit for use at the hospital. If you download the form, you can fill it out on your computer before you print it out.”
Download the medication form >>

Parkinson’s Disease Fact Sheet

“Share the facts about Parkinson’s with hospital staff and ask that a copy be placed in your chart.”
Download the fact sheet >> 

“I Have Parkinson’s” Reminder Slips

“Share vital information about Parkinson’s with every member of your care team in the hospital.”
Download the reminder slip >>

Magnet

“Use this magnet to display a copy of your Medication Form in your hospital.”