A recent patient of mine with Parkinson’s disease reported that he sometimes feels like he can’t “catch his breath,” and acknowledged that this occurs most often when a dose of Carbidopa medication is wearing off. Another patient participating in a swallowing evaluation began to exhibit extreme dyskinesia approximately 15 minutes ahead of her next scheduled dose of Carbidopa. Her dyskinesias were evident in oral-mandibular muscles, trunk, and limbs, and she reported that they are worse later in the day, when she is under stress, and when she is fatigued.

So, what are dyskinesias, and how can they interfere with functional activities, including speech and swallowing?

Dyskinesias, uncontrollable involuntary movements that are different from tremors, are a common experience for individuals with Parkinson’s Disease (PD). Dyskinesias may be mild, and not interfere with daily living, or they may be more debilitating than the cardinal symptoms of PD. Speech-language pathologist may suspect dyskinesias in patients who report shortness of breath when speaking, or those who have obvious dyskenesias of the limbs, and also report or have been observed to have difficulty co-ordinating breathing and swallowing, resulting in frequent coughing when eating and drinking due to mis-timed swallows. Any patient’s report of shortness of breath should of course be referred to their physician, to assess for cardio-pulmonary disease, but if lung and cardiac function is judged to be wnl, and the patient has been on dopamanergic medication for several years, than dyskinesias might be considered as the source of the patient’s breathing difficulty.

Not surprisingly, research has indicated that dyskinesias and motor fluctuations impact quality of life. 

Dyskinesias and Off States for Individuals with Parkinson’s  Disease:             The Patient’s Perspective (Parkinson Alliance 31st survey)

935 individuals participated in the survey. A high prevalence of dyskinesias was reported, and dyskinesias adverse impact on day-to-day functions included: speech, chewing and swallowing, eating, dressing, hygiene, handwriting, engaging in hobbies and other activities, walking and balance, and engaging in public and social settings.

Many of the participants in this survey reported that dyskinesias and Off-states impacted quality of life and were directly related to elevated levels of emotional distress (i.e., anxiety and depression).

If you are bothered by dyskinesias, discuss your concerns with your neurologist. Keeping a diary of on/off symptoms can be helpful to your physician when discussing treatment options. Therapists, PT, OT, and Speech can also be advocates, contacting the neurologist to report observations of dyskinesias or other wearing off symptoms that are troubling for the patient and that are having a negative impact on functional activities.

The Parkinson Alliance, is a non-for profit organization created in partnership with the Tuchman Foundation, with a mission of funding Parkinson’s research. Parkinson Alliance is also dedicated to improving quality of life for persons living with PD and conducts patient-centered research with an opportunity for PWP to participate in a survey on various topic twice annually. To learn more about the organization and to read the full report on dyskinesia, follow the link below:

https://www.parkinsonalliance.org/research-result/dyskinesias-and-off-states-for-individuals-with-parkinsons-disease-the-patients-perspective/

Hi-VOLT® 4 PD is an affordable, portable feedback tool for your voice

The Hi-VOLTR® 4 PD is a voice-activated, calibrated, feedback tool, housed within a bracelet, making it possible to go with you wherever you go. Physical therapists, like Dr. Becky Farley, find the Hi-VOLTR® a useful tool when patients are undergoing physical therapy or working out in the PWR!Gym® . Rock Steady Boxing instructors use the Hi-VOLT to punch out a loud voice during exercises, and of course, speech-language pathologists report that the Hi-VOLTR® can help patients in and out of therapy and require that the patient focus on only one cue: “speak loud enough to activate the light”

voice-on-light-bracelet

Hi-VOLT® 4PD voice-on-light helps with daily speech practice

Tips for Getting the Most Benefit from Your Hi-VOLT® bracelet

Trish Haggett, Coordinator of the Parkinson’s Support Group of the Finger Lakes, Canandaigua, NY, recently purchased Hi-VOLTR® bracelets for some of her members with grant funding received from F.F. Thompson Health System, Mary Clark Thompson Foundation.

Trish’s husband had success with using the Hi-VOLT during physical therapy and now they want their members to experience the same success during speech therapy, physical therapy, or when practicing at home.  Trish and I created a  GREAT list of suggestions for home practice:

Options for using your Hi-VOLT® during PT or Speech practice include:

  • PT exercises such as counting reps out loud
  • Read headlines from the newspaper
  • When driving as a passenger in the car, read aloud as many signs as you can, stay loud enough to activate the light
  • Vocalize an “ah” with a good quality voice and sustain for 10 seconds
  • Count in sets of 10, each number activates the light
  • Spell 4 or 5 letter words aloud forward and backward, each letter activates the light
  • Make a list of 20 people you know, say “hello” or “hi” to each one – each greeting should activate the light
  • During voice practice, always have some water available, NO straining. Vocalizing should never cause coughing or throat irritation.  If it does, that probably means poor technique; and a consult with a Speech Language Pathologist might be of benefit.

Practice once or twice a day for 30 minutes. If you are loud enough to activate the light, you will be loud enough to be heard by others.

If you prefer to not  wear the bracelet, place it approximately 13” from the body or mouth at eye level where you can see it while reading aloud words, phrases or sentences.  If you need it closer to activate the light, that’s fine too!

An IMPORTANT REMINDER:  The bracelet has limited battery life of 45 hours of continuous use and it has a non-rechargeable, non-replaceable battery.  Please turn it OFF when not in use. Daily use for up to an hour each day should provide at least 8 weeks of use.

Hi-VOLT audio CD  is available as a disc or download and provides 22 minutes of speech practice in a hierarchical form from words to phrases to sentences, and is available for purchase from Voice Aerobics. Guided practice can be helpful when using the bracelet, and can be used easily by anyone with vision or reading difficulties.

 

My MissionTo enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate  and empower. Mary Spremulli, MA, CCC-SLP * FiTOUR® Group Exercise Instructor * Voice Aerobics® A Whole Body Approach to Voice Practice

Voice Aerobics the heART and Science of Voice Practice

 

 

 

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