Parkinson Voice Project Going Global with Speech Therapy Grant Program

speech therapy grants

This year, Parkinson Voice Project (PVP) is broadening its SPEAK OUT! & LOUD Crowd Grant Program to include support for international speech therapy clinics.

The expanded grant program is intended to help Parkinson’s disease patients around the world gain access to quality speech treatment to maintain their speaking abilities and minimize the threat of swallowing problems.

In addition to facilities in the U.S., grant recipients this year will include five clinics based outside the country. Applications are now being accepted and are due March 1. Recipients will be announced in April during Parkinson’s Awareness Month. Go here for full eligibility requirements, and visit this site to apply.

Nonprofit organizations, universities/graduate students, and hospitals who would like to bring PVP’s speech therapy program to their communities are encouraged to apply. Applicants must have the physical space and clinical staff necessary to provide both individual and group speech therapy. Last year’s winners may reapply for continued support of their programs.

For international applicants, awards are open to any clinic that can use English or Spanish-based therapy materials.

To achieve its mission of making speech treatment widely accessible, PVP recognized a need to support speech language pathologists. These professionals, according to the organization, get low insurance reimbursement for services, and also often have trouble securing funding from employers for specialized training and supplies. The grants are designed to provide pathologists with the knowledge and tools needed to help the Parkinson’s community.

The grant program, which honors the late Parkinson’s speech expert Daniel R. Boone, PhD, was launched last year with 92 grants awarded to speech therapy clinics nationwide. Of them, 34 were university-based clinics.

More than 900 speech language pathologists and graduate students received training in SPEAK OUT! and LOUD Crowd therapy protocols, plus speech therapy supplies, funding support for their organizations, and a trip to PVP’s clinic in Dallas-Fort Worth for hands-on training.

“Our grant program was a huge success in 2018,” said PVP CEO Samantha Elandary, in a press release. “Our goal is to make quality speech treatment available to those living with Parkinson’s around the globe.”

According to Elandary, Parkinson’s affects more than 1 million U.S. residents, and up to 10 million people worldwide. Some 89 percent of patients are likely to develop speech disorders that can lead to swallowing difficulties.

Combining speech, voice, and cognitive exercises, SPEAK OUT! addresses the motor speech issues related to Parkinson’s. LOUD Crowd is a voice maintenance program consisting of speech therapy groups and a singing segment to foster voice strength retention.

Using the two-part trademarked speech therapy program, the patient and a speech language pathologist tackle a series of speech, voice, and cognitive exercises outlined in a specialized workbook. Stressing “speaking with intent,” the program switches speech from an automatic function to a deliberate act. Because speech muscles are also used for swallowing, the benefits of the therapy are twofold.

Grant funding will come from the more than $2 million PVP raised over the past holiday season.

Through intensive speech therapy, follow-up support, research, education and community awareness, the nonprofit aims to preserve the voices of those with Parkinson’s and related disorders. To date, it has trained more than 1,300 speech language pathologists nationwide. Internationally, it has trained therapists in eight countries.

Among other offerings, the organization also hosts an educational lecture series. Earlier this month, Susan Imke, a certified gerontological nurse practitioner who focuses on families living with Parkinson’s disease and other neurodegenerative disorders, discussed “Optimal Nutrition for Living Well with Parkinson’s.” The next presentation, “Packing Some ‘Punch’ Into Your Parkinson’s Exercise Routine,” will be Feb. 9.

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My PD Frustration Consists of More Than Only Symptoms and Treatments

 

 

by Jean Mellano

You don’t have to be positive all the time. It’s perfectly okay to feel sad, angry, annoyed, frustrated, scared and anxious. Having feelings doesn’t make you a ‘negative person.’ It makes you human.” –Lori Deschene

As many people with Parkinson’s will attest, both Parkinson’s disease (PD) symptoms and finding the right treatment to alleviate them can be extremely frustrating.

The perception

Just as frustrating for me is that everyone thinks I am fine. Since I have no tremors, there are no obvious symptoms. Most well-meaning, healthy people either tell me I look great or that they have the same issues as me — cognitive decline, balance, poor fine motor skills, slowness of movement, and fatigue.

The truth

I struggle to maintain balance and must consciously avoid walking into furniture. My body, especially on the left side, does not always listen to me when I tell it to do something. Trying to maintain focus to do this is draining in itself. I also feel weak inside and I am always extremely fatigued. It is an exhaustion that no amount of sleep or rest can diminish.

A glimpse into my frustration

To help my fine motor skills, I have taken up ukulele lessons. I never played any instrument in my life, so I have no muscle memory to call on. The left hand and fingers play a huge role in learning how to use this instrument.

Recently, I had a meltdown in one of my lessons. My left fingers were not listening to me while trying to play some chords. The instructor was very patient, but I don’t think he understood the extent of my struggles. I was trying to play a G chord, which requires positioning three fingers from my left hand on various frets. These fingers would not cooperate and they just froze. With all the energy I expended trying to get my fingers positioned, I worked up a sweat.

Finally, so full of despair and frustration over what I have lost, I just broke down in tears. I can no longer control my body.

Empathy

The frustration continues on many fronts for me: the symptoms themselves, trying to find something to help treat my symptoms, and well-intentioned people not comprehending what I struggle with daily. Many years before I was affected by this disease, a friend of mine was diagnosed with PD. I could never understand why it was so hard for her to put on a seat belt.

Now I know.

I have a form of Parkinson’s disease, which I don’t like. My legs don’t move when my brain tells them to. It’s very frustrating.” –George H. W. Bush

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New Parkinson’s Drug Comes to Market after Early Investment from The Michael J. Fox Foundation

People with Parkinson’s have a new treatment option due in part to funding from The Michael J. Fox Foundation (MJFF). On December 21, 2018, the U.S. Food and Drug Administration approved Inbrija, an inhaled levodopa powder, for “off” episodes, when Parkinson’s symptoms are not well controlled with oral medication. MJFF supported early clinical trials of the treatment, and this is the first regulatory approval of a Parkinson’s therapy directly funded by our Foundation.

“Our strategy of funding high-risk, high-reward projects with a focus on patient impact has paid off,” said MJFF CEO Todd Sherer, PhD. “Today people with Parkinson’s have a new option to manage life with the disease. Because of our Foundation’s investments, many more treatments to manage symptoms and to stop progression are moving closer to pharmacy shelves and patient hands.”

MJFF partially funded Phase I and II trials of Inbrija by biotechnology company Civitas Therapeutics in 2011and 2013 with two grants totaling $1.3 million. Acorda Therapeutics, Inc. acquired Civitas in 2014 and continued the development of Inbrija.

De-risking Investments for Larger Partners

We provide early-stage therapeutic projects with the capital needed to advance. Grantees use our funding to build evidence of safety and efficacy, which can attract larger partners with resources for later-stage testing, regulatory processes and commercialization. Our Foundation directs donor-raised funds to the areas of most pressing patient need: from better symptom management to treatments to slow, stop or even prevent Parkinson’s progression.

“The way The Michael J. Fox Foundation does it is really best in class. The lack of bureaucracy and obstacles encourages emerging companies to seek funding and engagement and ultimately advance their projects,” said Glenn Batchelder, co-founder and former CEO of Civitas Therapeutics and member of the MJFF Board of Directors.

This “de-risking” model has advanced dozens of Parkinson’s therapies. Treatments with potential to slow or stop the disease are marching through clinical trials with new partners after early MJFF funding. Therapies targeting individual symptoms are experiencing similar momentum, and the Food and Drug Administration is currently reviewing another MJFF-funded Parkinson’s treatment for “off” episodes: APL-130277 from Sunovion Pharmaceuticals.

Other efforts from our Foundation speed these studies, as well. Educating the Parkinson’s community on “off” episodes through our communications channels helps potential trial volunteers recognize these fluctuations and seek new options. Our study matching tool Fox Trial Finder helped some participants connect directly with these trials, and we held a meeting with payers (e.g., Medicare/Medicaid and insurance companies) to discuss the impact of Parkinson’s symptoms, including “off” episodes. That knowledge may impact decisions on medication coverage.

New Option for Unmet Patient Need

The newly approved Inbrija, which Acorda expects to become available to patients in the first quarter of 2019, helps quickly alleviate symptoms of tremor, slowness and stiffness. With long-term oral levodopa use and advancing disease, these aspects of the disease can re-emerge between medication doses. These “off” episodes can greatly impact quality of life, bringing uncertainty to one’s days and limiting ability to complete daily tasks.

A 2014 MJFF survey of more than 3,000 people with Parkinson’s disease found that more than 60 percent of respondents were in an “off” state for two or more hours per day and nearly 50 percent said their “off” episodes caused them to avoid or stop activities.

Acorda Therapeutics CEO Ron Cohen notes, “It was clear thanks to the work of MJFF that ‘off’ episodes were a serious symptom for many Parkinson’s patients. Acorda committed to addressing this, and the FDA approval means patients will soon have a new treatment option.”

Acorda and The Michael J. Fox Foundation are collaborating on a number of projects, including a study of how patients, care partners and doctors discuss “off” episodes to identify gaps in communication and thereby optimum care.

This article first appeared on the Michael J Fox Foundation’s Foxfeed Blog

Meditation and Parkinson’s Disease: Looking for Lightness of Being

meditation

Living with Parkinson’s disease is a struggle against the loss of both motor and cognitive functions. One must invest effort into an action plan that reduces the impact of the disease — a rehab plan. This effort is daily (sometimes hourly) and can be exhausting.

Living with PD is like carrying a large backpack of rocks. It is at times a crushing burden that can overwhelm. Balance needs to be established in my life so that the work I do in fighting the disease does not consume me. I must spend time looking for lightness of being to balance out the heavy PD burden. I do this through a regular practice of meditation.

There are many ways to practice meditation: sitting and listening to calming music, sitting and gazing at a fireplace, practicing tai chi, or exercising with rhythmic breathing. These practices seek to help one enter the quiet mind. It is within the quiet mind that one experiences lightness of being. Meditation helps relieve stress and focus attention — both of which are of benefit to those with PD. There are books providing instructions on how to do this, but none deal directly with PD.

Practicing meditation with PD presents some unique challenges. The meditation practice starts with calming the body, and this is the first obstacle PD complicates. Repetitive motor activities like cycling, tai chi, or gardening are helpful when combined with focused breathwork.

Focused breathwork is diaphragm breathing in which you focus your full attention on the breath. Guided meditation, either from a teacher, in person, or from a recording, can help with this process of shifting attention. This shifting of attention is the second obstacle PD complicates.

Once past the first two obstacles, you should feel a little more relaxed. This relaxed state is the path leading to the door into the quiet mind, but I am prevented from going down that path by a third obstacle.

This third obstacle is heightened emotions and difficulty in regulating them. I have written about how PD heightens the impulse signals to the brain. During the meditation process, the signal-to-noise ratio changes, meaning that as one practices quieting the mind, the noise goes down and the signals connected to emotion appear louder.

The quiet mind is a mental state that silences the noise of the world, the body, and the self while at the same time maintaining a sense of peace and safety. It is something I practiced for decades and then lost touch with over the last seven years while battling PD. As my life has become stable, I am now returning to the practice and finding it much more difficult. I feel like a novice struggling with all the obstacles I used to walk around with ease. This third obstacle does impede my looking for lightness of being.

As I have helped patients to find a place of peace and safety, together we would often experience loud emotions. These are emotions connected to things we feel (consciously or subconsciously) that need attention. They are like boulders in the path, looking like obstacles blocking the way forward to the quiet mind. But one can learn to walk around them.

Most of the folks I worked with would have several boulders to walk around and needed multiple sessions to learn how to walk around them. As I write this, I remember the tender patience I should offer to myself.

Once past the boulders of emotion, you then arrive at the doorstep of the quiet mind. PD has made looking for lightness of being much more difficult for me, but not impossible. I have memories, and recently have felt glimpses of peace and deep calmness.

Seeking lightness of being ties into my New Year’s resolution. For me to quiet down the old tapes (emotional boulders in the path), I need to have a new mental state to go to. I can’t just remove the tapes and leave a void, because that void will be quickly filled back in with the old mental habits. Looking for lightness of being will be a lifetime adventure.

What ways do you practice meditation, and how have you found it to be helpful?

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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