Most of us know that one of the hallmarks of PD is muscle rigidity. Since the muscles of mastication and deglutition (swallowing) which include tongue, palate, pharynx and esophagus can also become affected and stiff as the disease advances swallowing can become not just a challenge but a matter of life and death as time goes by.
There are 4 Phases of Swallowing:
If there are problems in any of the main 3 phases (oral, pharyngeal or esophageal) this can lead patients to feel like they are chocking, feel like something is stuck in their throw, or like a child who can’t seem to coordinate the swallowing maneuvers (i.e. their tongue to push pill back at same time as they swallow) no matter how much fluid they drink.
Dysphagia (or difficulty swallowing) affects not just intake of pills but solids, liquids, and eventually even one’s own saliva resulting in increased drooling. This sensation can cause anxiety, feeling of panic. If dysphagia goes untreated it can lead to a person becoming malnourished because the energy required to consume a small amount of food can become extremely tiring to the point that many people with this disorder simply give up. Further, the more weakened and malnourished someone becomes the less energy they have to toil creating a potentially hazardous vicious cycle unless there is proper medical intervention.
So what can you do to avoid feeling this frustration? To avoid poor nutrition? And most importantly to avoid hospitalization due to aspiration?
Silent (not even being aware) aspiration resulting in pneumonia is one of the most common reasons for hospitalizations in those with PD. Although, it is preventable, this remains one of the top reasons of morbidity and mortality in PD patients.
First, like everything else prevention is the key to improved quality of life. However, before prevention one must learn to recognize the symptoms of dysphagia. This means frequent follow up with your MDS/neurologist to adjust medications especially if you feel like saliva is pooling, this is caused by the muscles of throat becoming stiff and not working properly. If you are having to cut things up into smaller pieces or drink water (fluids) more frequently or taking a longer time to eat this is a sign things are not going so well. You should have frequent evaluation by a speech therapist (ST) throughout the course of disease especially as disease advances. They will not only evaluate quality of speech but also evaluate for risks of aspiration and teach proper swallowing techniques. Your neurologist may order a Swallowing test to be done by the speech therapist to further evaluate.
The speech therapist will teach how to:
- Close lips and make tight seal
- Move tongue and cheeks to prep for the swallow.
- Instruct on types of food should be eating (liquids, semi-solids, thickened).
- Sit upright when drinking & eating (this includes pills)
- Take small sips and bites- alternating between the two. Do not gulp.
- Avoid straws if possible because can pull too much liquid very quickly into pharynx (before airway has had time to seal). Straws are best kept for those with severe tremors or dyskenesias but actually now there are many other tools for this like Sippy cups and cups especially designed for PD patients. (see my book on Parkinson’s Diva: A woman’s Guide to Parkinson’s disease for other tools).
- Keep your chin tilted down when eating and as your mother said please don’t talk with your mouth full (turns out she knew what she was talking about after all)
Second, once swallowing difficulty sets in, in my experience this does not mean is the end; in the majority of cases with medication adjustment and the aid of a peg tube ( feeding tube) symptoms are only transitory. I highly recommend for patients and families in the advanced stages who are experiencing dysphagia to consider a feeding tube usually in most of cases this is a temporary measure of assistance which serves to protect the airway.
Having a feeding tube allows patients to still taste food but not rely on it for nutrition and also if only having trouble while off then can use to get medications down until they kick in. Plus, with the advent of new treatment options becoming available the time patients have to endure feeding tubes is getting shorter. In my practice, I often used feeding tubes successfully to maintain quality of life while we adjusted medications and allowed for new medicines to come to market. I had a few patients who were end-stage and had been on everything to date and now were bedbound on feeding tubes in a nursing home but when Neupro patch came to market these patients were able to leave the nursing home and ditch the peg tube. So, I don’t ever like to look at feeding tubes as the final step necessarily but a means to an end. this allows patients also to stay hydrated because as dehydration sets in so does confusion, psychosis, agitation and worsening PD symptoms.
Many of my patients opted to leave their tube in place even after they were able to swallow as long as they maintained proper care just in case they had trouble in future. this worked very well. Only once in 15 years of practice did I have to remove a feeding tube due to infection.
Third, many Parkinson’s patients experience swallowing difficulty or choking sensation after the food has passed the pharynx on the way to the esophagus. Remember, the muscles of the esophagus not only do they get rigid and stiff but they become extremely slow as well not being able to properly move food along. It is important to have a good GI doctor that understand PD well and works well in conjunction with your Neurologists/MDS. He or she will help guide therapy plus be on the look out for reflux which often occurs as PD advances due to back pooling of food and acid that is not able to go down. the acid then burns the esophagus and even the vocal cords and pharynx muscles causing a sensation of chocking or difficulty swallowing. Another common problem is the presence of bacteria known as H.pylori that can also prevent motility and cause not just reflux but poor absorption of medications thus causing dysphagia. He/she may order an upper endoscopy to further evaluate.
As you can see, trouble can occur at any of the 4 stages of swallowing but with proper care, recognition, and prevention you may continue to lead a fruitful and productive life.
For suggestions on various dysphagic diets look at my previous post:Brunette Guide to Managing a Parkinson’s Dysphagic Diet