Shake, Rattle and Roll

Time Waits for No One

It happened to three of my family members.

First, four days before she died, my Mom had her first swallowing evaluation. At that point, she was unable to eat or drink anything. Her cause of death was dysphagia (swallowing difficulties) and Lewy Body Dementia.

Second, my mother-in-law’s death certificate said one of the causes of her death was Parkinson’s and another cause was malnutrition. She refused a feeding tube and was unable to swallow and ended up malnourished.

Third, my uncle had dementia and died when he choked while eating his lunch.

The similarities among these three individuals are that while they got medical help for the motor symptoms of their medical conditions, they never got referred or received help for their non-motor symptoms, (including speech, voice, and swallowing problems) until it was too late. What were they waiting for? Time waits for no one.

I am proactive in dealing with both the motor and non-motor symptoms of my Parkinson’s. I cannot afford to wait as I know that early treatment can make a difference in my quality of life and longevity. 

Related to this topic, Mary Spremulli of Voice Aerobics wrote an article about the issues of Parkinson’s voice, speech and swallowing. You can access it at the link below. I highly recommend it.

Speech, Swallowing and Parkinson's and What You Might Be Surprised to Know by Mary Spremulli at:

http://voiceaerobicsdvd.blogspot.com/2015/06/speech-swallowing-and-parkinsons-and.html

Adding Quality to the Lives of Those with Parkinson's

Roxann Diez Gross, Mary Spremulli and Debbie Tarakofsky have a lot in common. All three women are speech-language pathologists. They have dedicated their careers to helping those with Parkinson’s who have difficulty swallowing. They are passionate about preventing aspiration pneumonia, the most common cause of death in those with Parkinson’s.

To learn more, check out the following:

Speech pathologists improve quality of life for Parkinson's patients

http://feelingfit.com/home/13837-7/story

Breathing and Swallowing in Parkinson’s Disease

Kudos to the Davis Phinney Foundation for producing this 23-minute webinar on Vimeo featuring Roxann Diez-Gross, PhD, SLP-CCC, an expert on breathing and swallowing in those with Parkinson’s disease.

Dr. Diez-Gross shares practical techniques for improving breathing and swallowing, vital functions that can be affected by Parkinson’s disease. In this brief video, you will also find answers to questions such as:

When is the preferred breathing and swallowing pattern?

What are the stages of swallowing?

How are the eyes involved in the stages of proper swallowing?

What are the two vital functions of the mouth and throat?

How can saliva be controlled to prevent drooling?

How does the air in the lungs relate to the ability to swallow?

What is the meaning of aspiration?

What are the two refluxes for safety in swallowing?

How is the gag response related to swallowing?

How do you know that you might have a swallowing problem?

To watch this video, click on:

http://www.davisphinneyfoundation.org/living-pd/webinar/videos/breathing-swallowing-parkinsons/

Congratulations, Dr. Diez-Gross, for creating such a worthwhile video that educates and increases awareness about swallowing issues in those with Parkinson’s disease.

 Related Article:

When Swallowing and Breathing Get Out of Sync http://katekelsall.typepad.com/my_weblog/2009/04/when-swallowing-and-breathing-get-out-of-sync.html

 

I Never Knew that Swallowing Could Be So Complicated

I should have noticed the red flag—coughing and choking when eating and drinking during meals. I was clueless. I simply avoided dealing with it, thinking I already had too many other issues on my Parkinson’s plate. I recently discovered that have been experiencing difficulty swallowing (dysphagia).

Estimates of dysphagia’s prevalence in Parkinson’s Disease run as high as 90 percent. But how do you know if and when swallowing becomes a problem? The National Parkinson Foundation (www.parkinson.org) has a  highly informative booklet, Parkinson Disease: Speech and Swallowing, 2nd Edition written by Marjorie L. Johnson, MA, CCC-SLP. Included in the booklet is a self-assessment checklist that helps you determine if you may have a swallowing problem. Their checklist below is a good place to start. Check all that apply.

Swallowing Checklist for Persons with Parkinson’s Disease

I have recently lost weight without trying.

I tend to avoid drinking liquids.

I get the sensation of food being stuck in my throat.

I tend to drool.

I notice food collecting around my gum line.

I tend to cough or choke before, during, or after eating or drinking.

I often have heartburn or a sore throat.

I have trouble moving food to the back of my mouth.

I have trouble keeping food or liquid in my mouth.

It takes me a long time to eat a meal.

I sometimes have trouble swallowing pills.

My eating habits have changed recently, and/or I have a loss of appetite.

SometimesI have fever for unexplained reasons.

I notice changes in my voice quality after eating or drinking.

If you checked any of the boxes above, you may need to get a referral from your doctor to see a speech-language pathologist (SLP) for a swallowing assessment.

And if you are really brave, you may want to ask your care partner to complete the following checklist and check all the statements that apply.

Swallowing Checklist for Care Partners of Persons with Parkinson’s Disease

She/he seems uninterested in food.

She/he coughs or gets “strangled” during meals.

She/he often coughs following a meal when we are doing other activities such as watching TV or reading.

I have had to use the Heimlich Maneuver on the person that I am helping.

If the care partner checks any of the above statements, it is important to encourage the person with Parkinson’s to get a referral from the doctor for a swallowing evaluation by a SLP.

By completing the checklists, you and your care partner have taken the first step toward recognizing, understanding and getting help for your swallowing difficulties. Be proactive--don’t let a swallowing problem turn into a life-threatening event.

Tough to Swallow

August is usually my favorite month for enjoying the warm summer days. Not this August—it was just a blur of medical appointments. I consumed a lot of barium, which is heavy in weight and sandy in texture and yucky in taste, while being zapped with radiation at two appointments during the month.

I was tested for aspiration (food, liquid, or other material getting into the “wrong tube”-- the trachea instead of the esophagus) and voice and swallowing problems.

On August 3, I had the Barium Swallow. This test involves drinking barium while in various body contortions--right side up, upside down, facing right, facing left, facing back, while lying down on my back, and while lying face down. I aspirated while drinking barium in a prone position (face down). I silently wondered who drinks while lying on their stomachs, but didn’t question it.

Fortunately, since I am in overall good health, I got rid of that offensive barium by coughing vigorously. I was required to take this test without food, drink or medication for 8 to 12 hours. Without Parkinson’s meds for 12 hours, I arrived at the appointment stiff and in very slow motion. Picture the tin man without oil. NPO (nothing by mouth) after midnight can be disastrous for someone with Parkinson's, and I should have asked if my medications were an exception to that rule.

What I learned: If something gets into the airway, it has a good chance of getting into the lungs. The worst case scenario is that it could result in aspiration pneumonia, which, for a person with moderate or advanced Parkinson's might result in alteration in diet (thick liquids) and worse, even a feeding tube. Persons with Parkinson’s Disease who are weak from another illness or surgery are more at risk.

On August 17, I had the Modified Barium Swallow (MBS). It’s confusing in that this test has the same name as the previous test with a “Modified” in front of it. Apparently, the referring physician was also confused by this, as the MBS would have been the safer and more appropriate of the two tests to order when looking for aspiration. This test is conducted by a speech-language pathologist (SLP) in Radiology. I was asked to swallow small amounts of food and liquid such as applesauce and a cookie that was mixed with barium, and recorded on video. The results revealed no evidence of aspiration or dysphagia (difficulty swallowing). When I asked about swallowing strategies and swallowing therapy, the SLP responded that it wasn’t necessary because I was already using swallowing strategies that were effective.

What I learned: The Barium Swallow is indicated for looking at the function of the esophagus, including reflux. Although the liquid barium must pass through the mouth and throat on its way to the stomach, for persons with swallowing difficulty (known or suspected), drinking large amount of barium in positions not natural to eating and drinking may actually result in aspiration.

Make sure you are getting the correct test as ordered by your physician.

Following my swallow studies, I was evaluated again by an Ear, Nose and Throat (ENT) and voice specialist. Yet another swallowing test was completed, this time with a scope passed through my nose just above the voice box. The ENT made no recommendations for immediate medical or non-medical treatment, but suggested that I may want to return if my aspiration worsened considerably in a year. It seemed odd to me that I should "wait" for my aspiration to worsen before further medical treatment would be offered.

What I learned: I am as much of an expert on my own medical condition as any specialist. It is important for me to take charge, learn as much as possible about my health, ask why a particular test is being ordered, and seek out remedies to manage my health issues.

Take Charge of Your Post-DBS Speech and Swallowing Concerns

Motor symptoms in Parkinson Disease show good response to Deep Brain Stimulation (DBS). This surgery generally reduces tremor and dyskinesia, whereas speech and swallowing dysfunction typically do not improve and may even worsen.

Ask yourself these questions?

Since your DBS surgeries, do you get frustrated when your neurologist always asks how many times have you fallen, but never inquires about your speech, voice or swallowing concerns?

Despite many LOUD sessions, do you feel like a loser that you can’t speak loudly or clearly enough to be heard and understood?

Do you feel greedy for wanting to be able to both talk and walk after DBS?

Do you feel guilty for wanting both a competent neurosurgeon for your DBS as well as a competent programmer after DBS?

Have you given up your dreams of improvement of your speech, and instead withdrawn and allowed others to speak on your behalf?

If you answered “yes” to any of the above questions...

Don’t get frustrated, don’t feel like a loser, don’t feel greedy, don’t feel guilty and don’t give up!

Finally, there is a program that really seems to get it. The Voice Aerobics program may be able to offer some practical strategies to help you deal with the speech, voice and swallowing challenges you have experienced since your DBS surgeries.

Check out the Voice Aerobics website at www.voiceaerobicsdvd.com and an article from a speech therapist's perspective, Parkinson's Speech and DBS: Where Is The Speech Pathologist When It's Time To Program? at http://voiceaerobicsdvd.blogspot.com/2011/08/parkinsons-speech-and-dbs-where-is.html 

Tuesday, August 16, 2011

Drooling -- It Ain't Pretty

Dealing With Drooling in Parkinson’s and other Neurological Conditions

By Mary Spremulli, MA, CCC-SLP

Copyright © 2010

Lately, a number of my patients with Parkinson’s have been reporting drooling as one of the things that is most bothersome to them. Among medical professionals, there seems to be a few different points of view regarding why this drooling occurs and what to do about it. Some subscribe to the notion that the individual is producing too much saliva, and may recommend Botox injections to reduce saliva production. While this might provide some “cosmetic” improvement, too little saliva can also create problems (just ask any head and neck cancer survivor) as saliva is the necessary lubricant that holds our food together and helps to transport it efficiently without particles getting misdirected or sticking in our throat. Some of the early swallowing research also told us that saliva is a weak stimulus (messenger) to the sensory nerves that carry the message to the brain which in turn gives the instruction to swallow. Hence, if the sensory-motor system responsible for swallowing is beginning to work less efficiently, drooling, along with other swallowing issues might be one of the consequences.

If I am saying to a patient to “swallow your saliva," it is because their mouth is open and I am seeing a puddle of liquid ready to drop down on their shirt or my papers. In other words, if your mouth is hanging open, head and upper body leaning forward, saliva, like other liquids in life, will travel quickly out the path of least resistance. So, sitting or standing up straight and closing your lips, is one of the first things you can do to manage your saliva.

Face it, a grown man or woman drooling is not a pretty site. Particularly in this day and age of hand cleansers at every turn, we simply are not inclined to want to touch, hug, or otherwise engage with an adult drooling. So, if this is one of your problems, I will ask you to take a 30 day challenge, and try some of the suggestions below. I say 30 days, because a lesser commitment will simply not be long enough to judge the effect or create a better habit. If you belong to a support group, you might want to challenge other members to “mop it up and drool less.”

Drool Less Challenge

1. If you can, chew gum in 15 minute sessions. I recommend bubble gum (Bazooka is my favorite). For that 15 minutes work the gum in your mouth. Use your tongue to move it from side to side, up against the roof of your mouth, and push with your tongue against the resistance of the gum to blow bubbles. Denture wearers, try Freedent. Do this several times a day, right before or right after a meal might help you remember.

2. Use lip gloss (flavored and sticky are my favorites). Apply regularly and use as a sensory cue to keep lips closed, press lips and feel the stickiness. Swallow your saliva and notice the improved pressure when lips are closed.

3. Tart flavors are a good stimulus. Make your own mixture of concentrated lemon juice and water and put in a small spray bottle. Keep it with you in your pocket or purse and spritz frequently to activate a swallow of saliva.

4. Finally, a rolled up, soggy handkerchief or tissue used to wipe your saliva is also a bit yucky. Try a terry cloth wrist band like tennis players use. It’s a handy way to "mop" up drool and can easily be thrown in the wash.

Mary Spremulli, MA, CCC-SLP, is a licensed speech-language pathologist, licensed nurse, and national seminar leader, with publications on the topic of Patient Education and Ethics. Voice Aerobics, LLC, is a private practice offering speech-language pathology treatment and home programs for improving voice, speech, and swallowing for individuals with Parkinson's and other neurological disorders. Voice Aerobics DVD(TM) and Voice Aerobics Grand Slam (TM) are two of the products offered. To learn more visit: http://www.voiceaerobicsdvd.com/

When Swallowing Becomes Complicated

By Mary Jo Cartoni, M.A., CCC-SLP                                                                                   

Copyright © 2009

Before I became a speech-language pathologist (SLP), I never realized how complicated the seemingly simple act of swallowing was for some patients, particularly those with Parkinson’s Disease. These are some answers to frequently asked questions about what to do if you suspect a swallowing problem.

WHAT IS AN MBSS AND HOW DO I GET ONE?

A Modified Barium Swallow Study (MBSS) aka 'videofluoroscopic swallow study' (VFSS) is something your primary care physician can order.

Normal swallowing consists of three phases:

Phase 1: Oral

Phase 2: Pharyngeal

Phase 3: Esophageal

The MBSS is a very simple diagnostic test that looks at the first two phases of swallowing: the oral and the pharyngeal phases. It is sometimes confused with a "Barium Swallow Study" (aka an 'esophagram') which examines the third (final) phase of the swallow, the esophageal phase. 

Be sure a Barium Swallow Study isn't inadvertently ordered if an MBSS is, in fact, the desired test.  It happens more often than one might expect (even though the MD knows which is which, sometimes the person entering the order into a computer makes the wrong menu selection, since the names of these tests are so similar). 

HOW CAN I TELL IF MY SWALLOWING PROBLEM IS LIKELY TO BE OROPHARYNGEAL OR ESOPHAGEAL?

A general rule of thumb is that when someone has difficulty swallowing liquids, the trouble is often an oropharyngeal issue.  Conversely, when someone has trouble swallowing solid foods, this is often an esophageal problem.  Of course, there are always exceptions. For example someone with poor dental health or someone who has weakened oral muscles due to a stroke, might have a problem with solid foods resulting in an oral phase problem.  Conversely, some people with certain types of esophageal phase dysphagia have difficulty with liquids as well as with solids.  Your ordering physician will be able to make the best recommendation in re: to this.

WHO WILL BE PERFORMING THE MBSS?

Speech-language pathologists do MBSS and gastroenterology (GI) physicians do the esophagrams.  People are sometimes surprised that SLPs evaluate and treat dysphagia (swallowing disorders), but when you think of it, the structures used for speech and voice are very much those used in the oral and pharyngeal phases of the swallow.  Currently in hospital settings, I'd estimate that 80-90% of the patients SLPs see daily are those with dysphagia.  In my experience as an SLP, swallowing has really taken precedence over communication and cognition in the acute care setting in the past 20 years.

WHAT IS IT LIKE TO HAVE A MODIFIED BARIUM SWALLOW STUDY?

There's no preparation for the MBSS.  You can eat before the test but don't be too full to eat/drink more when you get there. Those who need dentures or partials to eat just need to have to have them handy.  Patients must be able to follow directions (e.g., if someone isn't a fluent English speaker, we'd need to line up a translator in advance of the study; or if they have a hearing problem, they need to have their hearing aids, or the instructions can be written as needed).  Patients have to be able to swallow well enough to participate in such an exam.  For example, if dysphagia is very severe, (i.e., the patient is not able to reliably produce a swallow) this test is not appropriate, because swallowing has to be possible in order to obtain useful information from this test. 

Typically during the MBSS, the person is asked to eat various consistencies of solid foods (for example, something mushy like apple sauce; something soft but that requires chewing like fruit cocktail; and something hard and dry like graham crackers).  They are also asked to swallow liquid textures such as water and/or soda--and if needed, thickened liquids (often thickened apple juice).  A little barium is added to each of the textures of foods/liquids that are trialed and the person is observed under fluoro (a type of x-ray) as they chew and swallow each bite/sip. They may be asked to drink from a spoon, cup and/or straw. The person may also be asked to swallow a barium pill to evaluation pill swallowing. 

IN GENERAL, WHAT ARE THE OBJECTIVES OF AN MBSS?

1. To determine the presence/absence of "penetration" (when material approaches the airway (wind pipe) but does not go below the level of the vocal cords) and/or "aspiration" (when material enters into the airway below the level of the vocal cords) and whether this is "silent" (no cough response) or if a reflexive cough or throat clear is generated / how effective this was in clearing the material. 

2. To determine the specific reasons for penetration/aspiration, if present.  That is, what specific aspect(s) of the oropharyngeal swallow is/are not working correctly and thereby resulting in penetration/aspiration?

3. To determine the effectiveness of various compensatory strategies, for example, is it helpful to employ a head turn or tilt, chin tuck, multiple swallows, breath hold techniques, effortful swallow, throat clear, modification of the size of the sip or bite, texture variants, and others.  Each technique targets the particular cause of penetration or aspiration, and for this reason, a chin tuck will not be helpful for everyone and in fact, can make aspiration worse in some people.  The strategies selected to trial will be dependent upon the findings of the MBSS.

It's important to also realize that even though 3-5 minutes of images are usually obtained during an MBSS, it is in fact, a "snapshot" of a person's swallow. Other factors that can skew the findings can include presence/absence of fatigue; pain; whether a person is "on" of "off" medications, etc.

In a nutshell, the goals of an MBSS are:

1.) To tell if penetration/aspiration is present;

2.) If so, why it occurred (what part of the oropharyngeal swallow sequence wasn't working just right); and

3.) Which, if any, strategies or techniques are effective in preventing or limiting penetration/aspiration.

SHOULD I HAVE AN MBSS DONE FOR BASELINE INFORMATION BEFORE I HAVE SYMPTOMS OF DYSPHAGIA (SWALLOWING PROBLEMS)?

Getting an MBSS before it's really needed, is not necessarily a great idea.  Presumably it will just show that you have a normal swallow.  There is a substantial amount of fluoro exposure with these tests, so unless there is a specific problem to observe, it doesn't make sense to do one.  People can have repeat MBSS when warranted, though. It's not as though you can only have one or two, but you need to be conservative re: their use. 

AFTER THE MBSS, WHAT ARE MY OPTIONS?

There are a number of dysphagia therapy options.  These are often initiated after the MBSS so that treatment focus may be directed at the problem areas of the swallow as identified by the evaluation. Over time, the effectiveness of such treatment can be impacted by any progressive aspects of the underlying diagnosis, but that shouldn't prevent anyone from initiating therapy, since the progression of such diseases/conditions can vary so much from one individual to another.  Most of us would opt for doing whatever we can to maintain maximal swallow status for as long as possible.  The SLP who performs the MBSS can make the best recommendations re: follow-up treatment options.

Postscript from Mary Jo Cartoni:

Because my focus was to tell you more about the MBSS, I realize that I neglected to mention that swallowing can also be evaluated clinically.  In other words, an SLP can evaluate swallow function without diagnostic imaging, such as an MBSS, in an outpatient office visit, or at the bedside, if the person is a patient in the hospital.  In fact, this type of clinical evaluation is often done first, with the MBSS following, as needed. 

A clinical/bedside swallow evaluation is very similar to the MBSS in that the person is asked to swallow a variety of textures (but no barium needed) and is observed by the SLP for clinical signs and symptoms of aspiration (coughing, wet/gurgle-like vocal quality, throat clearing, etc.)  Various swallowing techniques/strategies can be trialed, as with the MBSS, depending upon the results.  The advantage of a clinical swallow evaluation is that there is no fluoro exposure. The disadvantage is that there are no images obtained.  However, a clinical swallow evaluation can be very effective when performed by an experienced SLP. 

In the hospital where I work, most of our in-patients are treated for swallowing based upon the results of their clinical swallow evaluations.  Those patients that are more challenging to evaluate/treat clinically receive MBSS evaluations.  With outpatients, often the person's MD has determined that an MBSS is the appropriate first step, and so in that scenario, the MBSS is performed rather than the clinical swallow evaluation.

Related Article:

When Swallowing and Breathing Get Out of Sync at:                                          

http://katekelsall.typepad.com/my_weblog/2009/04/when-swallowing-and-breathing-get-out-of-sync.html

When Swallowing and Breathing Get Out of Sync

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
Pittsburgh, Pennsylvania