Update: Dysphagia Gastroenterologist Referral

[BeedieBird]

This is an update to my post about choking and coughing and hoarseness. I had so many comment on that post. There were were many, many wonderful suggestions and lots of input.

Instead of being referred to a speech pathologist, the primary doctor I'm seeing, not a neurologist, because I'm spending winter in California and away from my healthcare team, referred me to gastroenterologist instead.

I also had the esophagram that she ordered, But I didn't complete the entire x-ray. The radiologist wanted me to lie down flat and then have me drink the barium and I refused to do that. I told him I cannot lie down and drink any fluids. I'll choke. So I'm declining to participate in that part of the exam. What he was able to x-ray was the upper part of my GI standing up.

As I drank the barium he was watching on a video as it moved through the swallowing stages. At one point he had me stop drinking and he asked me to hard swallow several times. Then he shook his head. Then he gave me a glass of water and he said take several sips of this and keep swallowing and I did. And he shook his head. Then he showed me the video camera of what he was seeing and the barium which had formed into a long tube was not moving and stuck in the pharynx. It was not going into the esophagus. It was just sitting there. There was no motility. The muscles were not moving to help it carry on into the next stage of the swallowing process which is entering the esophagus. After a lot more water and swallowing it finally did.

I feel I would benefit from speech therapy but to be honest there are so many videos on YouTube. I don't think I need to see anyone in person. But I also feel this is a motility issue with my muscles not moving at all and I think that's a dopamine issue. Even though I take my medication an hour before eating or drinking and I did so with this exam as well, it doesn't seem to be helping the muscles in the throat area that move the food along the swallowing stages.

So I'm curious if anyone has had this experience and this particular swallowing symptom. My voice is still strong and loud. I don't have issues with that. But liquid and food are not moving into the esophagus so it's probably backing up and some going into my lungs as well, this the coughing and choking.

If you have any insight into how to improve motility in the upper GI tract, I would appreciate it.

If you are interested in seeing a short video on the four stages of the swelling process, I found One that I really like and it shows exactly where my food is getting stuck at the pharynx

youtu.be/HIaW3FUVM3k?si=reE...(Not working as expected?)

[gaga1958]

I have no advice. I just want to express my empathy with your situation. I've often had food get to the top and then it gets stuck there. It gives me a panic feeling I hope you can figure something out

[BeedieBird in reply to gaga1958]

Thank you Lady Gaga! I don't feel anything in my throat at all, just start gagging and coughing uncontrollably which I presume indicates aspiration. No doubt some liquid and food debris have made it down the wind pipe, which isn't good. Aspiration Pneumonia is the #1 cause of PD death, so they say 💁

[MarionP]

Ever looked into or asked professionals to look into "neuromuscular electrical stimulation (NMES)"?

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"Electrical stimulation of muscles, specifically called "neuromuscular electrical stimulation (NMES)," is a therapy used to treat swallowing difficulties (dysphagia) by delivering small electrical currents to the muscles involved in swallowing, aiming to strengthen them and improve swallowing function; this is typically done by placing electrodes on the skin of the neck over the targeted muscles, and is often administered by a speech-language pathologist alongside traditional swallowing exercises.

Key points about electrical stimulation for swallowing:

Mechanism:

The electrical stimulation directly activates the nerves that control swallowing muscles, causing them to contract and potentially improving muscle strength, coordination, and sensory feedback involved in the swallowing process."

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Now not to get the cart before the horse but there actually seems to be a particular sort of commercial application out there using the general principle:

."Commonly used name... This therapy is often referred to as "VitalStim" therapy, which is a brand name for a specific NMES device used for swallowing rehabilitation.

Who benefits:

Individuals with dysphagia due to conditions like stroke, head and neck cancer, neurological disorders, or other causes that weaken swallowing muscles may benefit from electrical stimulation therapy.

Treatment delivery:

A trained clinician typically places electrodes on the skin of the neck over the targeted muscles, and adjusts the stimulation intensity and frequency to achieve the desired muscle activation during swallowing exercises.

Evidence and limitations:

While research supports the potential effectiveness of NMES for dysphagia, the evidence is not conclusive and further studies are needed to establish the optimal treatment protocols and patient populations who would benefit most."

So the idea behind this is to provide artificial stimulation to nerve muscles into reflexively flexing (and maybe extensing).

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[BeedieBird]

Thank you Marion, I've just started this journey so I will certainly inquire about any suggestions that could provide a possible solution, or relief. I'll research that for sure.

[LAJ12345]

I saw a method for swallowing capsules. As you swallow shake your head from side to side. You could try it. It might work for swallowing food.

hardynutritionals.com/video...

[BeedieBird in reply to LAJ12345]

This is good to know. Thanks.

[PalmSprings]

I have had some weird choking issues occasionally and so I am very interested in what you find out. Also, what part of California are you in? I am in Palm Springs part of the year.

[BeedieBird]

I'm staying in Los Osos near Morro Bay, CA. Trying to get a referral to a speech pathologist who can run the modified barium swallowing test. Here on the central coast there aren't many specialists. That's my challenge right now. I'm finding that certain eating behaviors I've changed are helping, those recommended by most PD organizations. and the exercises on YouTube and I ordered the EMST175 lite to strengthen expiratory muscles. Love the Palm Springs area. Good Luck!