She found me! …

The tables have turned. A fellow blogger, doing research, found my blog post on Dysphagia (difficulty in swallowing) and has taught me about Achalasia.

Achalasia is a heterogeneous [ diverse in character] disease categorized by various intensities of esophageal contractions.

When Terri was first diagnosed with Achalasia, she was told she would need to stick to a liquid diet for a while. Not only was she limited to a liquid diet but she was also limited to consuming 6- 8 ounces of liquid every 2 hours.

After Terri had surgery,she discovered that she would be limited to a mechanical soft food diet permanently. A mechanical soft diet is made up of foods that require less chewing than in a regular diet.

[Slightly better than] A puréed diet is made up of foods that require no chewing, such as mashed potatoes and pudding. Other foods may be blended or strained to make them the right consistency.

Terri states: “I belong to several Achalasia and Healthy Eating support groups on Facebook and have been saddened and overwhelmed by the frustration people experience trying to find food to eat much less healthy food to eat. Not everyone has supportive friends and family. And to be honest, I have not heard of anyone else being gifted recipes. So… I will share the recipes I was given as I try them. And on bad days where I have to go back to liquid for a while? I will share those liquid diet / pureed recipes, too.

“I know everyone with dysphagia – whether from Achalasia or some other issue – will have problems with different things. I know that what works today may make you choke, aspirate or regurgitate tomorrow. But these recipes I was gifted, I gift to you. They are not set in stone. They were shared to help me live my best life and I share them in turn to help you also live your best life.

THUS, I am sharing Terri’s site with my readers: ‘follow’ her, to gain recipes as they become posted.

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)

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.