Dear Doctors: A good friend has Parkinson’s disease. She’s struggling, so I don’t ask too many questions. She was drinking water, started to choke and her husband mixed something into her glass that helped her swallow. Do you know what that was? Is there something I can do to help?
Advertisement
Dear Reader: When someone you care about is living with a chronic or progressive disease, it can be difficult to figure out the boundaries of what is OK to ask and what topics are off-limits. Adding to the challenge is the fact that, out of necessity, many acts of caregiving take place in public. However, that doesn’t automatically make them open for comment or discussion.
Having one’s health become a focus of attention can be embarrassing, tiring and emotionally isolating. Your decision to not ask questions about the incident you described allowed your friend and her husband to handle an immediate need, and then to move on. You preserved their privacy and spared them the burden of an explanation.
That said, it is also reasonable that you want to understand what you witnessed. In this case, your friend’s husband was helping her manage something known as dysphagia. This is the medical term for difficulty with swallowing. It is common in conditions that affect the nervous system, including Parkinson’s disease. It is also often seen in people living with multiple sclerosis, head and brain injuries, stroke, Alzheimer’s disease and other forms of dementia. Dysphagia also occurs in disorders that affect the esophagus, cancers of the head and neck, and it can begin to affect adults as they age.
Muscle stiffness and slowed movement are two of the primary symptoms of Parkinson’s disease. They are most noticeable in the limbs, but they also affect the coordination and strength of the muscles involved in swallowing. This includes the muscles of the tongue, mouth and throat and the esophagus. The disease can also lead to reduced sensation in the throat, which further interferes with the proper sequence of a successful swallow.
From your description of events, it sounds as though your friend’s husband added a thickener to her glass of water. These are often made up of some sort of starch or gum. They turn a thin liquid, like water, into more of a gellike consistency, like a nectar. A thickened liquid moves more slowly, which allows additional time for the reflexes involved in a swallow to become organized. It also reduces the risk of aspiration, which is when liquid accidentally enters the airways.
While thickeners can be helpful for people dealing with dysphagia, there are some drawbacks. Many people find the texture and taste to be unpleasant. This leads them to drink less, which increases the risk of dehydration. It is also possible for the thickeners themselves to interfere with the bioavailability of some medications. And even with a thickened liquid, aspiration remains a risk. This makes the management of dysphagia an ongoing challenge.
You can help your friends by quietly letting them know you understand the challenges they are facing, and that you are available for support if needed.
(Send your questions to askthedoctors@mednet.ucla.edu, or write: Ask the Doctors, c/o UCLA Health Sciences Media Relations, 10960 Wilshire Blvd., Suite 1955, Los Angeles, CA, 90024. Owing to the volume of mail, personal replies cannot be provided.)