Affordable Care Act Decision: What Does It Mean For Persons With Parkinson's And Other Chronic Neurogenic Diseases?

This month, as I sit down to write my check to Blue Cross for my health care coverage, my annual increase ( a birthday gift from my insurer), now makes my bi-monthly premium nearly equal to my mortgage. The rising annual rates will eventually be the factor that will make it impossible for me to remain a small business owner. As a provider and potential health care recipient, it has been apparent to me for a long time, that change must come about in our heath care delivery system.

Yesterday's decision by the Supreme Court to uphold the Affordable Care Act, receives my applause, not because it is a perfect solution for managing the cost of health care in our country, but it will hopefully create a better safeguard for persons with chronic and acute medical conditions to not be denied access to medication or care because of a medical diagnosis.

Below, is a statement from the Parkinson's Action Network (PAN) regarding the Supreme Court decision.

Parkinson's Action Network Statement:

"While  the Supreme Court's interpretation of the Commerce clause and legislative taxing power are signficant for future decisions, in terms of immediate impact, PAN celebrates the United States Supreme Court Decision to uphold the Affordable Care Act (ACA), with limited exception regarding the Medicaid program.

For the last three years, PAN has been clear that we support the provisions of the ACA that guarantee health coverage for all regardless of pre-existing conditions, eliminate lifetime annual caps on health insurance benefits, and phase out the Medicare prescription drug coverage doughnut hole. In addtion, PAN has been an active voice in the implementation of ACA health-care reform programs, particularly in the ares of Medicare and patient -centered research. These programs deserve our attention, because once fully implemented, they could signficantly impact care received by those on Medicare and those who have private insurance.

Since the law's passage, the portion of the ACA that defines what is minimally acceptable health insurance covered plans has shifted to the individual states to implement. PAN advocates have been active voices on these issues of "essential health benefits."

Any person with or affected by Parkinson's Disease or a related condition are invited to join PAN in their work as they continue to advocate for access to affordable health care for those with Parkinson's Disease as well as other chronic or serious health conditions.

I believe, as PAN does, that access to health care is not a partisan issue, but rather, a human rights issue. I would also suggest that health insurance coverage should never replace personal responsibility for safe-guarding one's health through education, exercise, diet, and  healthy life-style living.

 

iParkinson's May Offer Speech Improvement But Requires Motivated User

This summer I have been trialing several of the device interventions which are being marketed for persons with speech and voice changes resulting from Parkinson's Disease. Speech changes are broadly categorized as "hypokinetic dysarthria", and include features such as: slurred speech, too rapid rate, sometimes stuttering-like speech patterns, and the most common problem, hypophonia, referring to voice which is too soft or too low.

While traditional speech therapy, including the Lee Silverman Voice Treatment (LSVT(R)) can address some or all of these speech features, there are individuals who fail to retain the changes or improvements achieved in speech therapy, and for those folks, use of an external aid which helps them calibrate to a more normal level of loudness may be appealing.

Since I have been incorporating auditory masking** into my speech evaluations for about 5 years, with documented improvements in patient's speech, iParkinsons was of particular interest to me. The developer, Casa Futura Technologies,  has integrated auditory masking, along with a few other methods into an application for use with a small, portable iPod device.

A few weekends ago, six people with Parkinson's Disease, four men and two women participated in an iParkinson trial here in Florida. While not all six of the participants responded to the device features similarly, ALL responded to one of the device features, with either increased loudness, improved speech clarity, or both. One participant, in particular, had nearly unintelligible speech and has never had prior speech therapy intervention. His response to FAF ( frequency altered feedback), one of the device features, resulted in remarkably clearer speech. Yet, as we all commented in amazement, he seemed unaware and unaffected by the improvement. And therein lies the challenge of introducing these types of devices to people.

Without an opportunity for immediate feedback, such as watching oneself on video tape, it is unlikely that many of the persons with the speech problem will be aware of the improvement. Person's with speech decline due to Parkinsons have a lack of "sensory calibration," a phenomena well described by researchers. Not unlike the hard of hearing person who insists that everyone else "mumbles," while refusing to wear a hearing aid, the person with speech changes resulting from Parkinson's, often insists that they are talking just fine, and may resist using a device aimed at improving their speech unless convinced of the problem.

The iParkinsons app may be a great new tool for speech-language pathologist use with patients as a way of demonstrating quickly to patients their capacity for better speech and voice. Once the person is aware of the improvements possible and expresses motivation to improve some aspect of their speech production, the speech-language pathologist can explore all options which now include traditional therapy or a device intervention.

** Auditory masking is a method of introducing a sound or noise into the ear sufficient to block the speaker's own voice to his or her ears. Masking devices were used in experiments in the 1940's as researchers looked for ways to reduce stuttering in speech, but early devices were often large and cumbersome. By the 1970's a more modern device, the Edinburgh masker became available but is no longer manufactured. More recently, voice scientist have had an interest in using masking techniques as a way of reducing the impact of hypokinetic dysarthria, associated with Parkinson's.
To learn more about iParkinsons go to:
http://casafuturatech.com/index.php/

Casa Futura wants your VOTE:

"Vote for us on Chase Mission Small Business We're applying for a $250,000 grant to train SLPs to use our iParkinsons and MPiStutter apps. 

 It just takes a minute if you have a Facebook account."

Get more information on Casa Futura's website by clicking on their link.

Loyola University Maryland Student is recipient of first, annual Voice Aerobics student scholarship.

Sharon Tang, a first year graduate student at Loyola University, Baltimore Maryland received the 2012 Voice Aerobics student scholarship. The $500 scholarship was begun as my way of giving back to the profession I love, and to support a next generation speech-language pathologist.

I was touched by many of the emails and applications I received. Although the monetary amount being offered seems small, I realize that for a student, even a small scholarship amount can help to pay for text books or other miscellaneous expenses, and ease the financial burden of trying to obtain a degree.

I read and re-read applications trying to select a recipient. Since there was no “scientific” way to make my selection, I am afraid I yield to my heart. I was touched by Sharon’s desire to enter a field where “it is possible to truly make a difference in other’s lives.” Like me, Sharon is also an animal lover, and in fact rescues dogs through the Mid-Atlantic Pug Rescue. In her desire to combine interests of ”helping people and working with dogs,” she hopes to one day have a therapy dog.

Thank you to everyone who took the time to contact me and submit an application. Acceptance of applications for next year will begin March 1, 2013, with a deadline of April 30, 2013.

Scholarship recipient, Sharon Tang and Remus
Mary Spremulli, MA, CCC-SLP, Owner, Voice Aerobics, LLC

My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower.

June Is Aphasia Awareness Month...Recovery May Go On For Many Years

Acquired aphasia is a speech and language impairment that is usually the result of a stroke, although it can also occur with brain tumors, head injuries or other trauma to the brain. When aphasia occurs as a symptom of stroke, it can cause difficulty with understanding or using language, difficulty with reading and writing, and recovery of normal language functions may take weeks, months, and sometimes years. Yes, that's right, YEARS!

In the past, it was thought, and taught, that recovery from aphasia post stroke would  likely occur in the first 6 months following a stroke, and expectation for language recovery beyond a year very limited. This prognosis for poor recovery of language once the first year had passed also influenced whether insurance would pay for speech services when it was months or even years following an initial stroke. This left many patients in the position of receiving LOTS of therapy in the first 2-3 months ( when spontaneous recovery is already taking place) , and with little or no speech therapy treatment in the months or years following a  stroke. Early or late depression ( unrecognized or unmanaged) might also influence how willing or motivated an individual is to participate in speech therapy treatment.

With advances in neuroimaging techniques, such as MRI, theories are evolving about neuroplasticity ( the brain’s capacity to create new pathways over a lifetime), and in the case of a brain damage from stroke, for undamaged areas to take over for damaged areas. From aphasia research we are learning that the patterns of aphasia recovery varies significantly among patients and many patients experience some spontaneous recovery well after what is traditionally defined as the chronic phase of stroke. For patients with chronic aphasia, neuroimaging has revealed that successful aphasia treatment, along with improving communication ability, does influence both brain function and brain structure, and further research will hopefully guide speech-language pathologists in selection of the best treatment approaches based on the  location of stroke and an individual persons learning styles.

Recently, I discovered a great resource for persons with aphasia, motivated to practice on their own and within a community of other persons with aphasia. Aphasia Toolbox, developed by Bill Connors, allows anyone with a computer to continue to improve communication skills from home.  Learn more:http://www.aphasiaapps.com/

Up Close and Personal:

Anthony is a patient of mine. He came to me 10 months post stroke with severe, persistent aphasia and apraxia. He had been discharged from treatment elsewhere, being told there was "nothing more that could be offered." Anthony's wife called me in tears, requesting further help, and a speech generating device ( Lingraphica(R) ) designed especially for persons with aphasia seemed approriate. Anthony is seen below just being introduced to the device, but he has recently obtained his own, and is "thrilled" to be able to continue to practice communicating at home, and wherever he goes!

Click here to hear Tony's story:
http://www.youtube.com/watch?v=ftqPNBFXBiQ&feature=youtu.be