ALS blog posts

PatrickOBrien

Filmmaker with ALS regains a lot with chance he takes on his art and eye-gaze technology

Probably few people would argue that Patrick O’Brien is a free spirit, or that he approaches life in an outrageously good way. Some may shy away from the raw satirical way the 41-year-old avant-garde filmmaker and former world famous New York City disc jockey/internet celebrity approaches his art. But all bets are on that many or most people who watch Patrick’s acclaimed autobiographical documentary “Transfatty Lives” would agree he has a lot of heart.

Ten years in the making, the film received the 2015 Audience Award at New York City’s Tribeca Film Festival and similar accolades at numerous other international film fests. Its title, sometimes lengthened to “As ALS Kills…Transfatty Lives,” is a nod to Patrick’s DJ name and his liking for donuts. Patrick wrote, directed and narrated the film through a series of Tobii Dynavox communication devices controlled with his eyes. He refers to the technology as a “ticket to salvation” for individuals who, like him, lack the ability to speak, use their hands or move about freely. “It’s an opportunity to take back what you have lost.”

Patrick has ALS—clinically known as amyotrophic lateral sclerosis, commonly as Lou Gehrig’s disease. Along with the unsettling diagnosis in 2005 came the news that he probably had two to five more years to live. Patrick took it as a license to set out on yet another creative venture.

Avoiding the beaten path of clichés about conquering adversity, Patrick makes sure everyone who sees “Transfatty Lives” has a window seat while accompanying him as he relives his unique physical, intellectual, emotional and spiritual travels of the past decade. The offbeat yet somehow refreshing ride recalls a romance early in the course of his ALS and the birth of his only child. Sugarcoating nothing, Patrick fills every frame in the movie with vivid words, sound and imagery to convey how the debilitating condition affects him—and those near and dear to him—inside and out. Instead of complaining, he imagines, “What if my diminishing physical abilities can be inversely proportional to my journey inward?” He confesses it’s no fun knowing you’re going to die, but also says, “In a weird way, it’s exciting.”

Strange as it may seem, Patrick sees his ALS as freeing. “I’ve become a better person for it,” he says in the film, which is geared toward mature audiences. “I’ve also witnessed those around me transform.” He treats his illness with attitude, appearing both serious and self-deprecating when he notes that family members and friends, many of whom are in the movie, consider his situation an excuse to party and that everyone is nice to him now.

Patrick dedicated “Transfatty Lives” to his son Sean Patrick, who is the star of its softer moments and appears in a later scene at the Leonard Florence Center in Chelsea, MA, the long-term care residence where Patrick lives. In one of the opening scenes, Patrick is heard reading Sean Patrick a letter. “Don’t be nervous or scared of this letter,” he says. “I’m just trying to connect with you.” The film recalls Sean Patrick’s birth. Patrick tells his son, “I was sad because I knew you’d never get to see the old me” and “I know you’re only seven, but can you have your lifetime’s worth of questions ready for me?”

Like any other dad, Patrick may or may not be surprised by those questions. He feels fortunate to have the technology to help him formulate answers to provide a legacy for his son.

On another level, Patrick wants his interactions as filmmaker and friend to be memorable in a positive way. “Transfatty Lives” indeed makes it clear that he prefers to spend time living than explaining. When he first uses an AAC device in a Maryland nursing home, for example, he tells his communication partners, “It’s my new voice. Get used to it.”

A speech-language pathologist at Leonard Florence recommended the Tobii Dynavox I-12 that Patrick currently uses. Patrick gives a shout-out to Team Gleason, for purchasing the device. Like former New Orleans Saints football player Steve Gleason, who founded the ALS awareness and advocacy organization after his own diagnosis with the condition, Patrick keeps the bigger picture of his circumstances front and center through his signature artistic work.

“Transfatty Lives” is coming to Netflix June 15 and available through a number of other streaming services. The film, which is not rated, contains adult language and subject matter. Click here to learn more about Patrick and his film. Visit here for information on the non-profit foundation established to pay for Patrick’s care and provide for his son.

Happy Monday FunDay! Holly here! This week, I’m introducing you to Voice Banking and providing you with a document that will teach you how to be successful with Voice Banking. At the bottom of this page, I also threw in a few of our upcoming webinars. Enjoy!

Voice Banking Resource

Voice banking is a strategy in which you record and save portions of an individual’s speech. Often, these recordings are later used on communication devices. Voice banking is usually used by individuals who have progressive conditions such as Amyotrophic Lateral Sclerosis (ALS). These individuals are at risk for their ability to communicate through speech deteriorating. Therefore, they choose to record themselves speaking.

The resource below provides some tips for recording with Communicator 5 or Compass software as well as ModelTalker, a web based recording tool to create a personal synthetic voice.

 Tobii Dynavox Voice Banking Resource

 

New Webinars!

All webinars are 12-1pm ET:

  • Wednesday March 23rd – myTobiiDynavox: Managing your Communication Content (.1 ASHA CEU) Register here.
  • Thursday April 7th – Using the Communication Tools in Core First: Register here.
  • Wednesday April 13th – Communicator 5 and Sono Flex (.1 ASHA CEU) Register here.
  • Thursday April 21st – Exploring PODD 15 Preschool & School Pagesets (.1 ASHA CEU) Register here.
  • Thursday May 12th – Compass & the NavBar Pageset. Register here.
  • Thursday May 26th – Personalizing with Digital Images in Compass & Communicator 5 (.1 ASHA CEU) Register here.

By Patti Murphy

Doug Schneebeck is feeling the power of summer. That emotion, no doubt, will peak at the 2015 Oso High Mountain Bike Race June 7 in the picturesque Rocky Mountain village of Angel Fire, NM. The first U.S. Paralympic Cycling Team member with ALS, Doug, 54, hosts the event for a bigger reason: to raise ALS awareness. More concretely, the race is a fundraiser ALS for research efforts, and services for the estimated 30,000 people in the United States living with the fatal disease, and their families.

On average, 15 people are newly diagnosed with ALS (short for amyotrophic lateral sclerosis) each day.
With his own diagnosis in July 2010, Doug joined them. Within the next year, he found what he hopes will become a lasting way to lighten the grimness of a situation he shares with so many others. After retiring from a career as a civil litigation attorney, Doug started Oso High Endurance Sports, an organization that has raised more than $300,000 for the ALS community through cycling and running events. From the get-go, he had much more than dollars and cents in mind.

“I had decided to create something enduring that would contribute to the public understanding of ALS, raise some money, and be a present for our family,” Doug told us in a message composed through the Tobii Dynavox I-15 device he uses for communication. “I began brainstorming on a Saturday morning, and had a working website by Sunday evening.” The illness has taken Doug’s ability to do many things that most of us take for granted, like speaking, but his desire to help others is unstoppable.

Through the Oso High website, athletes of all abilities can publish information about themselves, their sport (not limited to cycling or running) and reach out to others to sponsor their participation in an event. Individuals can make donations to the ALS Association through the site. Doug’s wry wit is evident in The ALS Blogs section where he chronicles his adventures and challenges. When we asked him about the origin of the Oso High name, he wrote in his fun-loving way, “‘Oso High’ is a multilingual play on words. ‘Oso’ is Spanish for place, oh, so high, at about 10,000 feet, and the mascot for the race is a bear.”

Since he cannot ride his recumbent tandem trike off-road, Doug plans to ride 22 miles on the road with his wife Jean Bannon at the Angel Fire event. With an estimated 125 participants, they expect to raise about $37,000, he said.

Oso High is Doug’s passion and the I-15 helps him not just with typing, maintaining the website and other technical aspects of carrying the project forward, but keeping in touch with everyone involved. It takes a bit longer to tell a joke using the device instead of his natural voice, but he still keeps everyone laughing.  Doug is grateful to friends and acquaintances in the cycling community for their support. His biggest cheerleaders are his wife and their children—Jessa, 35; James, 20 and Abby, 18.

Doug and Jean talked frankly about life with ALS in an “Eye on New Mexico”  segment last fall. Their appearance on the local news show coincided with their participation in the ALS Ice Bucket Challenge. Doug communicated using a Tobii Dynavox EyeMax then and was about to make the change to the newer I-15. The transition, he said, was seamless. He is especially pleased with the I-15’s processing speed, mouse simulation and reliability.

“The ability to be heard in social situations is outstanding,” Doug said. Before the eye-gaze systems, he used voice-recognition software and typed on a keyboard when he could still use his hands. ”The ability to communicate is so important. I can’t imagine the isolation without the device.”

By Patti Murphy

Like the funky music videos he produces through the movements of his eyes, Kip Jackson’s sense of humor is outrageous—in a good way.

It always was, says his sister Julie Nichols, recalling times when she lived away from Arkansas, their home state. Kip, 11 years younger, came to visit. He kept her up half the night, she said, with his funny stories, and quip after quip. “I would laugh until I cried. I hurt I laughed so hard.”

Life is different now for Kip and Robin, his wife of seven years. The laughter continues—but with a new purpose: to help and heal in ways they may not have imagined before.

kiprobin2

“We try to keep it light,” Robin said. That they do, though Kip, 43, has been living with amyotrophic lateral sclerosis (ALS) for four years. Signs of ALS, the fatal illness commonly known as Lou Gehrig’s disease, surfaced in November 2011 when Kip experienced weakness in the legs and multiple falls. The formal diagnosis came nearly a year later, while Kip was still working as a data engineer at a telecommunications company.

Now he needs a wheelchair to get around, a ventilator, trach and feeding tube. He can no longer speak or use his hands. His facial expressions are declining.

Fortunately, Kip has powerful tools for bringing out his equally sharp spirit and wit. He uses an eye-controlled Tobii Dynavox I-15 device to communicate, choosing the man’s voice with the southern accent for his delivery. A separate device, the PCEye Go, provides the easy computer accessibility Kip needs for his creative pursuits. The technology lets him get things done, have fun and be who he is. “Kip and the device are one,” Robin said.

Kip and Robin have developed their own silent language and read each other well. But the device is a necessity, filling in many blanks that crop up in everyday communication.

“Without it, I would drive her absolutely crazy,” Kip said through the I-15 when he addressed the Arkansas Society for Respiratory Care convention.

Kip wanted his audience to understand that ALS is a journey he and his wife are traveling together. “I have the diagnosis, but we both have it.”

The presence of others means a lot, Robin told us. “We’re surrounded by friends and family who provide a great deal of support.”

The Jacksons feel blessed to have Amy Wilson, Kip’s weekday caregiver who indulges his keen interest in football and his sarcasm. “She tolerates me and puts up with my smart-aleck antics,” he said.

Robin, a behavioral health specialist for high school students, says she tries not to blur the lines between being a spouse and a caregiver when it’s just her and Kip at home. “We still have date night,” she said. “We just have it at home.” It’s nice that with the I-15 he can take the lead in the conversation, queue up a movie or change TV channels.

Julie, meanwhile, has always felt like a second mom to her brother. She juggles her schedule so she can get Kip ready for bed Friday and Saturday nights to give Robin a break. While working two jobs, Julie also looks after Kip on Wednesday evenings and Sunday afternoons. She loves that his high school buddies still visit. It cracks her up that they watch football reruns—yes, reruns. Kip’s I-15 helps preserve their camaraderie. “I don’t know how they could communicate when they come and sit with him in the living room,” she said, or get the full effect of his frequent quips. “Some are funny. Some are funnier.”

The device is practical for everyone, Julie said. She appreciated its built-in alarm when Kip needed extra care through the night. “When you’re tired, you fall into a hard sleep. Kip would hit that alarm and wake us up.”

Kip took his time when shopping for his device, noting that the visual content on many similar devices was too animated for his tastes.

“TheI-15 has the best specs out there,” he said. “I liked the professional design.” The Communicator pageset he uses is super adaptable, he said. Kip streamlined its onscreen keyboard to meet his needs by enlarging the space bar and other frequently used buttons to improve accuracy while his eyes do the typing.

kiptobii

That’s how Kip is writing his first novel. Then there’s his beloved Blue Pellucidity music project. Kip makes song videos using the PCEye Go in combination with a digital music workstation and various types of music software. He uses the I-15 for the narration. The message tells you that he approaches his situation from a peaceful place.

In his optimistic style, Kip likes to say he “lives with” ALS instead of that he “has” ALS. His sometimes zany Kip’s Krusader’s Facebook page has a feel-good effect. There are photos of Kip and Robin having fun together and Kip doing magic tricks with a boy from the neighborhood. Kip’s posts on pop culture are short, sweet and sassy. He also promotes ALS awareness activities and offers encouragement in facing adversity, as he does in this post:

“Chances are that this disease will take my smile. If that does happen, know that on the inside I am full of life – always will be.”

 

We are in a constant state of reflection, whether it was in grade school getting a report card, or as an adult having an annual performance review, we take the time to evaluate our areas of strength and areas that could use improvement.  We are constantly looking back, making adjustments, and moving forward as the best version of ourselves.

So what does this rambling have to do with ALS and AAC? Everything! It is easy to get comfortable with familiar communication partners, or with using the more routine messages on a daily basis, but how well do your strategies work when you are faced with a new communication partner or unexpected situation?

I often talk about the AAC Needs Assessment, and I am bringing it up here because it is so important. I encourage you to take a few minutes of your time to reflect on what you are able to communicate efficiently, and what areas you would like to improve on.  The AAC Needs Assessment is a quick checklist that will help you identify those areas and maybe identify areas that you haven’t thought of before. After you complete the AAC Needs Assessment, file it away, in six months, pull it back out, what areas have improved, what are some new areas that you would like to work on. Take the time to reflect, delight in your strengths, and set goals for your areas of need.

May is ALS (amyotrophic lateral sclerosis) awareness month.  ALS, also called Lou Gehrig’s disease, is a progressive, degenerative motor neuron disease.  More than 5,600 Americans are diagnosed with ALS each year.  ALS progression is different for everyone.  Patients with ALS experience gradual decline in the ability to use their muscles throughout their body often ending in complete paralysis with generally intact cognition.  As the motor neurons continue to cease functioning, muscles that control respiration, swallowing, and speech can also be impacted.  Because of this decline, some people with ALS use AAC, or speech generating devices, for their daily communication.  Due to the motor impairments of their limbs, neck, and other body parts, people with ALS often require an alternative way to access their device.

Alternative access includes any way a person operates their AAC system other than the traditional typing or touching mode.  These methods include switch access, head mouse, joystick, eye gaze technology, and much more. When working with the ALS population, the access piece can be the hardest and most important part of an AAC evaluation.  The access method selected should be the simplest, most efficient, and least fatiguing method possible.  For example, someone may still be able to point with their finger but it may take them a long time and they may make errors.  Using an alternative method could be more efficient for this person and should be trialed. Due to the progressive nature of the disease, access needs to be targeted to accommodate abilities now and in the future.

Although a speech therapist must be the one to submit paperwork for a communication device, the occupational therapist (OT) can be a valuable member of the evaluation team.  While the speech therapist will have extensive knowledge about the device and language, the OT can offer guidance in the motor functioning and future motor functioning of the person with ALS. This knowledge can help guide a proper access method recommendation.  Occupational therapists (OT) have a background in vision, motor control, and possibly alternative access itself.  While providing numerous access methods, DynaVox AAC devices also include environmental control and computer access options within the communication system.  An OT may have a better understanding of these specific tools than a speech therapist alone. When possible, the collaboration between a speech therapist and an occupational therapist doing an AAC evaluation for a client with ALS may benefit the client greatly.

This ALS Awareness Month we all renew our dedication to the fight against ALS and aim to provide greater support to those suffering with this progressive disease.  For more information on ALS and AAC please see our website.  Communication, computer access, environmental control, and simply greater independence are part of the support we want to give our clients with ALS.  Speech therapists and occupational therapists are a great team to help ensure success of AAC in daily interactions.  If you are a speech therapist looking for an occupational therapist to help with alternative access, or if you are a person with ALS looking to get an AAC evaluation, contact your local ALS clinic or ALS foundation for information on local access specialists.

This entry is in honor of my friend and colleague Ms. Christine Jasch.  Christine is an OT, an access-guru, a client advocate, a technology genius, and currently a person battling ALS.  She taught me so much about access, increasing independence, and overcoming obstacles while helping ALS clients.  Her perseverance makes her an amazing clinician, a fierce fighter against her ALS, and a true inspiration. 

Have you heard of ALSconnections.org?

If not, join us as we talk with Christopher Whitlatch, founder of ALSconnections.org, about his organization. Learn just what ALSconnections.org is and how Christopher can use your help!

Watch video now!