Lewy Body Disease Requires Creative Treatment Approaches

Lewy Body Disease (LBD )is not a rare disease, and in fact, it affects an estimated 1.3 million individuals and their families in the United States. Because symptoms can initially mimic other diseases like Alzheimers and Parkinson's, it can sometimes be awhile before patients are accurately diagnosed. (Source: LewyBody BodyDementiaAssociation)
 http://www.lbda.org/category/3437/what-is-lbd.htm)

Lewy Body Dementia, is a type of dementia that can accompany a movement disorder like Parkinson's. When LBD is associated with a movement disorder, patients may begin to experience a decline in speech and swallowing which can impact day to day communication and safety during eating and drinking. When these patients are referred for speech and swallowing treatment, they can be a challenge for therapists, and the patient's memory difficulties, anxiety, and variable and unpredictable overall  day to day behavior can limit their  ability to participate in traditional treatment.

Incorporating treatment methods which reduce memory burden, such as  pre-recorded and guided programs  available to the patient at home and at any time, may provide the best opportunity for daily  practice, while at the same time help to reduce caregiver burden.

Over the last year, I have worked with several patients with LBD, and I have found success with utilizing video-feedback as a means of providing ongoing coaching and cueing for the patient.  Below is a brief case study of a recent patient who has benefited from this type of home practice. He has graciously allowed me to also share a video clip:

Case study: Elwin is a retired school teacher who had been previously  diagnosed with Parkinson's and more recently, LBD, with symptoms that include decline in speech and swallowing . Our initial visit was in an outpatient clinic setting, but because he easily became anxious, we decided to move the remaining visits to his home. In addition to his speech and swallowing problems, he has been steadily losing his vision  and this vision loss and its subsequent challenges are a large trigger for his anxiety and focus of conversation. His visual impairment also limits his ability to benefit from activities which require written instructions.

Elwin was seen for six hour long visits, and at each visit, a video recording was made of him performing prescribed swallowing and speech exercises . None of the video recordings was longer than 12 minutes, and all were downloaded to his home computer. Once downloaded, he required only that his spouse turn on the computer and click on the video. Once started, he required no further instruction from me or his wife. He has been encouraged to complete his swallowing exercises, which include respiratory muscle training, at least one time daily, and also to complete one of his voice practice tapes daily.

Given his diagnosis, it is unknown whether this daily practice will  substantially improve function, but, it is hoped that it will reduce the rate of symptom progression and improve quality of life for him and his spouse. Periodic review of the home program at intervals of 6 months was suggested.

Watch Elwin here:

Parkinson's and Swallowing Safety: What's Falling Got To Do With It?

I recently attended a local Parkinson's Symposium that included presentations by two neurologists. The focus of the day was on the neuroprotective benefit of exercise and PD. It was noted by one of the neurologist, that exercise was particularly important for reducing decline in balance and cognition, citing those as the two biggest problems facing persons with Parkinson's Disease (PD).

Now, with due respect to the neurologists, and with admission of my bias, I would rank decline in speech and swallowing as being right up there as one of the ULTIMATE challenges for most people living with Parkinson's and related disorders. And unfortunately, with no mention of this to the audience, this error of omission became  a missed opportunity for participants to be educated about the importance of  early exercise for the whole body, including  the respiratory, speech and swallowing systems.

There is some recent research, in fact, indicating that postural instability and cognitive decline may have a strong correlation with  decline in swallowing function. ( Dysphagia. 2011 Mar;26(1):92-6.)

Walker, et al reported that although many people with Parkinson's disease (PD) experience dysphagia (swallowing problems) , the prevalence of dysphagia in people with PD is unknown. Therefore the intent of their research was to examine this further by studying a prevalent population of PD cases. Anyone who answered "yes" to either one of the two questions: Do you have difficulty swallowing food/liquid or tablets? and Do you cough after eating/drinking? was considered to have dysphagia. Question 7 of the Unified Parkinson's Disease Rating Scale (UPDRS) was also used to identify dysphagia.  Almost one third of study participants reported dysphagia, and there were significant correlations with cognitive function, anxiety, depression, quality of life, and UPDRS-reported gait disturbance, postural instability and problems with falling. There was no correlation with disease duration, age, or gender.

As I read these study findings, they speak again to that somewhat "sneaky" or insidious nature of Parkinson's I often refer to when speaking to patient groups. A disease which lurks in the background, changing the way muscles are working, even before full blown symptoms are present, and this includes speech and swallowing.

Please don't wait for your neurologist to consider a referral to a speech pathologist. Regardless of how long it has been since your diagnosis of Parkinson', if you have not already had a consult with a speech pathologist, request one. Learn some voice and swallowing exercises that can be incorporated into your general exercise program as one more step to reduce the  impact of Parkinson's on your quality of life.

Parkinson's and Your Voice: Get High!

A recent pilot, prospective study was published  in AJSLP ( American Journal of Speech-Language Pathology, November 2011), examining the relationship between pitch elevation measurements and swallow parameters in individuals with known swallowing difficulties. The study was the first to document some relationship between pitch elevation and swallowing safety, and although pitch elevation alone may not always predict the likelihood of a swallowing problem, this early research suggests that examining pitch may be a useful tool.

Patients who complete the Lee Silverman Voice Treatment (R) program are introduced to vocal glides, and participants in Voice Aerobics (TM) classes are also introduced to vocal glides, with the addition of arm movements. Vocal glides help to elevate the larynx and lengthen the vocal folds with  resultant elevation in pitch.

This particular voice and swallowing exercise points to the complex interrelationship of the mechanisms of respiration, voice, and swallowing, and reinforces the notion that strengthening one component of the system may have a beneficial effect on the whole.

So, if you are not already completing vocal glides as a a part of your daily voice practice, why not begin now. They don't take much time, and coupling them with movement may create an opportunity to use other muscles in your body as well.

If you would like to join a Voice Aerobics class in performing some vocal glides, click on the YouTube link below:

 http://youtu.be/RJN743sEa5w

Dear Blue Cross: Please Answer Your Phone!

Despite the promise of a beautiful fall day yesterday which included sunshine and cooler Florida temperatures, my morning quickly turned sour  after spending 20 minutes on Blue Cross's automated customer service line . An attempt to check a patient's eligibility for speech services got sabotaged when the automated voice on the other end of the phone was unable to understand my responses. Despite multiple repetitions by me and a rising level of voice that sent the dog hiding under the bed, the calm robot on the other end of the line, just repeated her line of questioning.

I'm sure you all know the routine, what starts off as a friendly conversation between you and a robotic voice quickly turns bad as she asks you repeatedly for some information that she seems unable to quite understand. For example, she asks for the patient ID number, and I say a series of numbers: "8357," the robot voice asks: "did you say: "H377?" "No," I say calmly the first time, repeating the patient's ID numbers "I said: 8377" "I'm sorry, she calmly replies, I'm having trouble understanding you, did you say: "8B77?" "NO," I respond, and it goes on several more rounds. When I attempt to escape the voicemail system with a touch on "0", I am firmly told by the robot: " you will be unable to speak to a representative until you have responded to all the questions." My responses now turn to pleas and expletives that only serve to confuse the robot further, causing her to eventually say: "I'm sorry, please call your local  Blue Cross representative, good bye."

Angry, helpless,  and frustrated... are just a few of the words to describe how I felt when the call was terminated. Afterward, I wondered, how it could be legal for any business to not offer callers an option other than voice responses, in particular, if one is unable to use their voice. Patients and people I have met with speech and voice impairments tell me how difficult, if not impossible, it is for them to call various businesses and respond to automated systems that do not recognize their poor speech or soft voice.

A recent customer  service survey  indicated that 94% of Americans find it "frustrating to call a company and get a recording instead of a human being." If we consider the fact that 75 million people have a voice disorder, I think it would be fair to say that among that group, 100% hate automated customer service lines.

So, today is another day. I still don't know the patient's eligibility for speech services, and given that today is a full moon, I am not sure if that bodes well for my giving this a second try. But, if you are reading this, and if you have a speech and/or voice problem that makes it difficult for you to use these sorts of automated systems, let your complaints be heard. The following comments refer to technology access by persons with any type of disability. To read more, follow the link below:

1. Although many businesses and government entities provide an option for callers to reach a live operator, often none is available. Where no operator is available, most consumers with disabilities are trapped in a process of trial and error and finally just give up.
   Unfortunately, where automated response systems have a live operator option, they are only available if the caller is clever enough to get through a nearly impenetrable series of menu selections, rendering this service useless to those who need the operator the most. Indeed, public and private entities' collective goal of reducing caller dependence on costly paid telephone operators conflicts directly with their goal of providing access consistent with the mandate of Section 255.

http://affnet.ucp.org/ucp_generaldoc.cfm/1/8/11211/11211-11211/2206

Nagging, Fear, and Guilt, Rarely Cause A Change in Another Person's Behavior

One of the advantages of providing in-home speech, voice, and swallowing  treatment, is that I am able to work with patients in a naturalistic environment, and observe them performing their home practice. Since there is usually a spouse or other family member observing and commenting on treatment, their presence provides numerous teaching and counseling moments. An observation I have often shared with a spouse, is that "nagging" is not a good therapy technique.Yet, I remember times when I fell victim to this with my own dad. Times when I chastised him for not performing his physical therapy exercises, warning: "do you want to keep falling?"  his not drinking enough water,  "do you want to get a urinary tract infection?"etc.,etc..

I do believe that nagging usually arises out of our genuine love and caring for another person, along with our desire for them to improve from, or not succumb to some disease. But, the truth of the matter is, all of these tactics typically result in an increased feeling of helplessness and diminished self esteem in an individual, who is already grappling with the symptoms and functional changes imposed by the disease.

Physicians and therapists can also be guilty of employing some of these fear tactics, particularly when treatment recommendations are based on their agenda rather than  patient driven goals. "How can I help you be successful in reaching your goals?" is a question we should be asking every visit. And if or when a patient responds with the statement: "I don't think this is doing much good," they have provided important feedback regarding their own beliefs about their illness or their abilities, as well as an opportunity for further probing and goals clarification.

In the face of a progressive neurogenic disease, patients may fail to see the benefit of adhereing to proposed treatments, particularly when the end result is not a cure, or even a significant improvement in function, but rather a delay in symptom progression .


So, if fear tactics and guilt are not effective strategies for helping others follow through with  treatment recommendations, including home practice programs, what might help?

Research suggests that patients ( potentially all of us) must believe that the recommendations for specific actions or steps for dealing with symptoms of an illness or improving any level of functioning, will actually make a difference, and, that they  ( the patient) have what it takes ( mentally, physically, and emotionally) to carry out those steps. Patients with cognitive decline and memory problems, require a very personalized approach along with the use of treatment tools which will allow them to have some measure of self reliance and success. Videotaping a patient's treatment sessions can be a great method of improving adherence to practice.  Once downloaded to the patient's computer,  the session's instructions  with live coaching, remain available as often as the patient desires or requires. Video-taping also provides a a visual documentation of change and improvement. Seeing and hearing oneself sound better can be emotionally satisfying with increased feelings of personal satisfaction and pride serving as motivation to continue.