My mother-in-law and mother had something in common. They both died in their eighties with the same cause of death on their death certificates: Parkinson’s Disease (PD). Technically, the cause of my mother’s death was Lewy Body Dementia (LBD). Perhaps the doctor that pronounced her dead determined that PD and LBD were one and the same condition, although from my observation, LBD is a more debilitating combination of PD and Alzheimer’s.
My mother-in-law’s and mother’s death certificates were different in that my mother-in-law’s certificate indicated an additional cause of her death was dysphagia or difficulty swallowing.
My mother also had swallowing problems as the swallowing test given four days before her death revealed that she was unable to swallow ANY food or liquids. Why they waited so late in her life to administer a swallowing test remains a mystery to me.
Living with PD, I also experience swallowing problems. I frequently feel like I’m choking when I drink thin liquids such as water or tea or eat crusty bread. I often cough when it feels as though the food or drink has “gone down the wrong tube.” No one at any of my neurology appointments has ever inquired about my swallowing issues. However, I’ve been asked at every appointment about the frequency of my falls. I boast that I’ve only fallen twice – once in 2003 and once in 2004. But if anyone bothered to ask about swallowing, they would discover that unlike falling, swallowing problems are an every day occurrence for me.
Many PD patients experience dysphagia or swallowing problems. This can lead to aspiration pneumonia, which is an inflammation of the lungs and bronchial tubes due to breathing and inhaling foreign material such as foods or liquids into the lungs. This can result in death from PD (or the sugar-coated version described as “death from the complications of PD”). Given my background, you can understand why I’m terrified of choking to death. I’m afraid of “like mother-in-law, like mother, like daughter.”
Roxann Diez Gross, PhD and her colleagues have reported on this topic in “The Coordination of Breathing and Swallowing in Parkinson’s Disease” in the June 2008 issue of Dysphagia (published online November 20, 2007). Their research indicated:
· The high incidence of dysphagia and risk of aspiration pneumonia found in PD patients may be partially attributable to impaired coordination of breathing and swallowing.
· Aspiration pneumonia is a major cause of morbidity and mortality in PD patients.
· Dysphagia can develop at any point in the PD process. The severity of PD cannot predict the presence or severity of dysphagic impairment of PD patients.
· Healthy adults without PD exhibit an exhale-swallow-exhale pattern to coordinate breathing and swallowing.
· PD patients are more likely to swallow at abnormal times within the respiratory cycle, such as during inhalation.
· PD patients are more likely to inhale during and after swallowing.
· The lack of proper coordination of breathing and swallowing may be an important factor underlying dysphagia and place PD patients at risk for aspiration pneumonia.
So what’s a PD patient to do? I’m stumped, but I’ll contact Dr. Roxann Diez Gross and ask for her suggestions.
The following is the response from Roxann Diez Gross, PhD:
I love that you pointed out how the doctors don’t think to ask about swallowing. One of the problems with PD is that there can be little awareness of the condition. In a current study that I am collecting data on, I found that 6 out of 10 PD participants had significant dysphagia that they were not aware of. Two subjects were silently aspirating.
As to what to do:
1. PD patients should tell their doctors if they suspect a problem and get a swallowing evaluation. The evaluation should be fluoroscopic (x-rays) called a MODIFIED barium swallow (not a standard barium swallow or upper GI) or and endoscopic evaluation called a FEES (fiber optic endoscopic evaluation of swallowing).
2. I feel that if a problem is discovered, that the therapist should not just give PD patients exercises for strength, but they should look at breathing and swallowing coordination. PD patients should assure that they have adequate air in their lungs before swallowing (same as with speech). If the lungs have sufficient air, exhalation will likely follow. I teach patients to hold a small amount of pudding or liquid in their mouths, inhale through the nose and swallow before letting any of the air out. I also teach them to be aware of the nice long exhalation that should follow.
Roxann Diez Gross, PhD
Assistant Professor of Otolaryngology
Director, University of Pittsburgh Medical Center Swallowing Disorders Center