What Advocacy Means to Me--Perspectives from PALS about going to Capitol Hill

reprinted from Pathways Newsletter, ALS Association Greater Philadelphia Chapter Spring 2011


Have you considered becoming an ALS Advocate? Join hundreds of people from across the country on May 8-11, 2013 at the National ALS Advocacy Day and Public Policy Conference in Washington DC, and see for yourself the difference you can make in the ALS community!

The conference includes breakout sessions about research and other issues affecting people with ALS, and culminates in a Day on the Hill, where we meet with our members of Congress to share the ALS message and enlist their help with legislation to improve the lives of those living with this disease.

For more information or to register, visit http://www.alsa.org/advocacy/advocacy-day
Here’s what others are saying about becoming an ALS Advocate:

Advocacy doesn‟t require skill or a huge time commitment. The only knowledge you need is the personal experience you have had living with the disease. Advocacy may seem intimidating at first, but once you have faced a diagnosis of ALS, nothing can ever truly frighten you again.

– Jayne Cawthern, Boalsburg, PA

Being the "face of ALS" to our Congressman and Senators has been a really positive experience for me and my wife. We've had the opportunity to support the ALS Registry Act , increased federal funding for ALS specific research through the National Institute of Health and increased funding for research through the Department of Defense. It is truly empowering to help our elected officials understand how ALS impacts PALS and their families.–Keith Canady, Wilmington, DE

We are keenly aware of how uplifting it has been to meet with ALS people from all over our country, joined in an incredible effort to clearly present our special needs to Congressional representatives. No matter how cynical you might be about our ability to have any impact, you first notice that the Senators, Representatives and their staffs with whom you meet do listen and try to understand.–Kathryn & Gerry Voit, Cheltenham, PA

Spending a day moving between the offices on Capitol Hill is an excellent way to get to know more people involved with the fight against ALS. It is good to know that we are not alone and there are so many people working every day in the effort to find a cure and to treat ALS patients.–Stephen Potter, West Chester, PA

I was empowered by the experience of going with others to congressional offices to advocate for ALS. It was fascinating to learn so much about how government works and gratifying to realize that I was having an impact on getting research money for ALS. And throughout all these activities, I was moved by the kindness and solidarity of the ALS community - patients and their families, medical caregivers and researchers; I heard so many stories and made so many friends.– Mary McConaghy, Philadelphia, PA

I went to Washington to let our Congressional representatives hear about my experience as an ALS patient. Getting additional funding for research and also the National ALS Registry, will provide much needed research data that will help all ALS patients. Our representatives were very receptive to our needs, and willing to help in our efforts.
 – Arlene Gordon, Downingtown, PA

Being involved with Advocacy work for the ALS Association gives me the opportunity to give back to an organization that was a lifeline when my best friend struggled with her battle with ALS.– Maureen McPeak, Carlisle, PA

One of the frustrating things about being diagnosed with ALS is the feeling that there's nothing that can be done about it. However, I've found that participating in advocacy can be a way to do something about a situation that nothing can be done about. Through state and national advocacy efforts, I've been able to make a tangible difference in the fight against ALS.– Wes Rose, Glenside, PA

Adaptive Apparel for People in Wheelchairs

 Designed especially for the physically challenged
or wheelchair users
My husband and family members have a difficult time getting regular clothes on me now that I am in a wheelchair. Are there any special clothes I can purchase that will make getting me dressed easier?

Getting dressed is a challenge for the mobility impaired, but clothing options combining comfort and quality continue to grow for those in wheelchairs and assisted care. For the disabled, including those in wheelchairs, finding clothes that fit and are easy to put on is difficult. Finding esteem-enhancing garments is harder still. As the Disability movement has matured, specialty companies have emerged offering clothes and accessories that afford the disabled dignity and independence and enhanced efficiency to caregivers and institutions. Mobility Advisor says: Don‟t limit your wheelchair fashion wardrobe to smocks or ill-fitting clothes. Looking good means feeling good. What you wear reflects your personality, so it is important to buy clothes that you like and enjoy - to look your best.

Yet, sometimes disabled people have difficulty finding properly-fitting and fashionable clothing. Bodies change when they are in wheelchairs and standard clothing can gap and bunch in the wrong places. Clothing off the rack does not take wheel chair fashion into account.

Fortunately, some clothiers have realized wheelchair fashion is a specialized need. Clothes made for wheelchair users can be found on the internet, through mail order companies, and in specialty clothing stores. And you can find wheelchair clothing in everything from casual to formal styles.

Many types of clothes for wheelchair users come with Velcro instead of zippers or buttons. These easy on and easy off outfits are perfect for folks with limited mobility. When shopping for your wheelchair wardrobe, consider:

 Buy short coats and jackets; otherwise you sit on the coattail.

 Short capes and ponchos are easily slipped on.

 Wear loose fitting, longer skirts; tight garments look short.

 Separates are useful and better than a dress; buy tops, matching jackets, trousers, and skirts.

 Jogging outfits are attractive and can be worn many places.

 Stretchy fabrics, such as knit, move and give.

 Elastic waistbands in front-pleated trousers make dressing easier.

Keeping these points in mind when you‟e on your shopping spree will make it easier to find comfortable, trendy clothing styles that will make you feel good about yourself and make others take notice.

A full list of specialty clothing companies can be found at:

http://www.disability-resource.com/adaptive-clothing/index.php#URruTKpsNHW4APtE

It’s Like They’re Reading My Mind--How next-generation apps will market your brainwaves.

via Slate.com

By Grady Johnson and Sean Vitka

Posted Monday, March 25, 2013, at 5:49 AM

 

 

 

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Information from BCI devices could offer new value to developers, advertisers, and users alike.
Photo by Fabrice Coffrini/AFP/Getty Images

 

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Whether it's our location, contact lists, calendars, photo albums, or search requests, app developers, advertising companies, and other tech firms are scrambling to learn everything they can about us in order to sell us things. Data from smartphone apps, aggregated by third-party companies, can indeed paint an eerily accurate picture of us, and data miners are increasingly able to predict how we will behave tomorrow. For example, as Future Tense blogger Ryan Gallagher reported for the Guardian, Raytheon, the world’s fifth-largest defense contractor, has developed software called RIOT (Rapid Information Overlay Technology) that can synthesize a vast amount of data culled from social networks. By pulling, for instance, the invisible location metadata embedded in the pictures our cellphones take, RIOT tracks where we’ve been and accurately guesses where we will be—and provides all of this information to whomever is running the software. Other companies are increasing the accuracy of such forecasts by comparing our travel habits against our friends’ locations.

Amid the growing popularity of data mining, governments around the world are taking action on perceived misdeeds, like the $7 million fine Google faces for collecting unsecured information. But the stakes are far higher than lawmakers realize. New consumer devices are emerging that, left unchecked, could enable violations of our personal privacy on a far more intimate level: our brains.

Brain-computer interfaces have been widely used in the medical and research communities for decades, but in the last few years, the technology has broken out of the lab and into the marketplace with surprising speed. (Will Oremus recently explored the potential of BCIs in Slate.) They work by recording brain activity and transmitting that information to a computer, which interprets it as various inputs or commands.
 

The most commonly used technique is electroencephalography, which is widely known as a medical diagnostic test (especially for detecting seizures) but now has more potential uses. An EEG device is typically a headset with a small number of electrodes placed on different parts of the skull in order to detect the electrical signals made by your brainwaves. While EEGs cannot read your mind in the traditional, Professor X-y sense, it turns out that your brainwaves can reveal a great deal about you, such as your attention level and emotional state, and possibly much more. For instance, the presence of beta waves correlates with excitement, focus, and stress. One brain signal, known as the P300 response, correlates with recognition, say of a familiar face or object. This response is so well documented that it is widely used by psychologists and researchers in clinical studies. The popularity of EEG devices over other brain scanning technologies, like fMRIs, stems from their low cost, their light weight, and their ability to collect real-time data.
 

The medical research community has long been interested in BCI technology as a means to treat patients with paralysis, like those with “locked-in” syndrome (a neurological condition that results in total paralysis but leaves the brain itself unaffected). Through a simple, noninvasive EEG headset, scientists are able to interpret signals from the patients' brains—for instance, lift left arm or say: "hello"—and relay these messages to a peripheral device such as an artificial limb, wheelchair, or voice box.

 

Scientists are also researching the use of BCIs to treat psychiatric disorders like ADHD and depression. In fact, in the summer of 2012, OpenVibe2 released a new attention-training game for children with ADHD. Based in a virtual classroom, kids perform various tasks like focusing on a cartoon or finding an object, while the game introduces various stimuli (a truck driving by outside or a dog barking) to try to distract them. An EEG headset measures their level of focus, and objects on screen become blurry as attention wanders, forcing them to refocus their attention.
 

In the last few years, the cost of EEG devices has dropped considerably, and consumer-grade headsets are becoming more affordable. A recreational headset capable of running a range of third-party applications can now be purchased for as little as $100. There is even an emerging app market for BCI devices, including games, self-monitoring tools, and touch-free keyboards. One company, OCZ Technology, has developed a hands-free PC game controller. NeuroSky, another EEG headset developer, recently produced a guide on innovative ways for game developers to incorporate BCIs for a better gaming experience. (Concentration level low—send more zombies!)
 

Likewise, auto manufacturers are currently exploring the integration of BCIs to detect drivers' drowsiness levels and improve their reaction time. There is even a growing neuromarketing industry, where market researchers use data from these same BCI devices to measure the attention level and emotional responses of focus groups to various advertisements and products. Scientists remain quite skeptical of the efficacy of these tools, but companies are nevertheless rushing to bring them to consumers.

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Courtesy of Grady Johnson and Sean Vitka

The information promised by these devices could offer new value to developers, advertisers, and users alike: Companies could detect whether you're paying attention to ads, how you feel about them, and whether they are personally relevant to you. Imagine an app that can detect when you're hungry and show you ads for restaurants or select music playlists according to your mood.
 

But, as with data collected during smartphone use, the consequences for data collected through the use of BCIs reach far beyond mildly unsettling targeted ads. Health insurance companies could use EEG data to determine your deductible based on EEG-recorded stress levels. After all, we live in a world in which banks are determining creditworthiness through data mining and insurance companies are utilizing GPS technology to adjust premiums. With these devices in place, especially with a large enough data set, companies will be able to identify risk indicators for things like suicide, depression, or emotional instability, all of which are deeply personal to us as individuals but dangerous to their bottom lines.




 

These problems aren’t entirely hypothetical. In August, researchers at the Usenix Security conference demonstrated that these early consumer-grade devices can be used to trick wearers into giving up their personal information. The researchers were able to significantly increase their odds of guessing the PINs, passwords, and birthdays of test subjects simply by measuring their responses to certain numbers, words, and dates.
 

BCIs invoke serious law enforcement concerns as well. One company, Government Works Inc., is developing BCI headsets for lie detection and criminal investigations. By measuring a person's responses to questions and images, the company claims to be able to determine whether that person has knowledge of certain information or events (leading to conclusions, for instance, about whether that person was at a crime scene). According to one BCI manufacturer, evidence collected from these devices has already been used in criminal trials. Although the jury is still out on the reliability of these devices, as psychics, predictive psychology, lie detectors, and unreliable forensics have taught us: Voodoo convicts.
 

We don’t want to delay or block innovation—we’re excited for the day when we can open doors like a Jedi or play Angry Birds entirely with our minds. Or even better, when double amputees can. But now is the time to ask serious questions about who ultimately controls our devices, who has access to the data stored and collected on them, and how those data are ultimately used. Real-time data that reveal one's attention level and emotional state are incredibly valuable—to buyers, prosecutors, and us data cattle. The question remains as to whether it will simply be the next grain of personal information bought, taken, volunteered, or stolen in the name of more accurate advertising and cheaper services.

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And it's evident that today's privacy standards are woefully inadequate. You might assume health privacy laws would offer protection for this category of sensitive data. But you’d be wrong. Those rules apply only to a select group of people and companies—specifically health care providers, health insurers, and those who provide services on their behalf. Thus, most companies' ability to use BCI data or sell it to one another—even real-time data from your brain—is essentially unchecked.

The Department of Justice's legal opinion is that law enforcement can access any data a user provides to its cellphone company without a warrant, even if no person at the service provider would regularly see that information. This includes passive background data, like the location of the cell towers used to complete a call. Despite their loss on a similar issue at the Supreme Court last year, the DOJ continues to argue that they can access months of a user’s location data stored by phone companies and further that they can compel these companies to provide prospective location information. The deliriously old statute controlling these law enforcement tools was passed in 1986 (though thankfully, legislators like Sen. Patrick Leahy, D-Vt., are trying to update it).
 

Tomorrow's Yelp may be interested in more than just your location. Your brainwaves might help it provide more appealing results, and we may volunteer that information without understanding the implications of the data collection. Prosecutors could turn around and use this information as circumstantial evidence: Johnny says he wasn't angry at the victim, but his brainwave forensics say otherwise. Do you expect the jury to believe the robot lied, Johnny? If our laws remain outdated when these issues begin to come up, this new, incredibly intimate data will be guarded just like our current data: not at all.
 

This article arises from Future Tense, a collaboration among Arizona State University, the New America Foundation, and Slate. Future Tense explores the ways emerging technologies affect society, policy, and culture. To read more, visit the Future Tense blog and the Future Tense home page. You can also follow us on Twitter

Boston Children's Hospital model for patients who are Communication Vulnerable

A MUST read/watch for any healthcare professional working in a hospital, nursing home, etc...

The Boston Children's Hospital service delivery model for patients who are Communication Vulnerable was recently highlighted in the AAC-RERC spotlight on Supporting Effective Patient-Provider Communication Across Health Care Settings


http://www.childrenshospital.org/clinicalservices/Site2016/mainpageS2016P15.html

Secretion Management in ALS

http://www.alsphiladelphia.org/NetCommunity/Document.Doc?id=833

 

Some people with ALS will have difficulty with what feels like excess saliva in their mouths, which may result in drooling (sialorrhea), choking and disrupted sleep.

Saliva is a normal substance in our bodies, used to help moisten the oral cavity (our mouths and throats) so that we can swallow more easily. It also plays a role in early digestion of our food. Saliva production is increased anytime we smell, taste, chew and swallow food. For the person with ALS who has weakened mouth, tongue and throat muscles, swallowing normally-occurring saliva can be difficult, resulting in drooling and/or choking. Medications commonly prescribed to decrease saliva include: amitriptyline, robinol ®, levsin ® and Scopolamine® patches. Possible side effects of these medications include dry mouth, constipation, and urinary hesitancy. These drugs should be used with caution if you have glaucoma, an enlarged prostate or problems with memory loss. Botox® (botulinum toxin) is often prescribed if the medications noted above, are ineffective. Botox is injected (by a physician who has received special training in this area) directly into the parotid and submandibular glands, where the saliva is made, causing a decrease in saliva production. It often takes 1-2 weeks for maximum effectiveness, and if it is successful, will usually last (decrease saliva production) up to 12 weeks.

For sleeping difficulties due to the build-up of saliva, try elevating the head of the bed with pillows or by placing a bed wedge under the mattress.

Thick sputum in the back of the throat can be another concern for the person with ALS who has weakened throat muscles. Clearing sputum can be difficult, often leading to choking and/or the fear of choking. Medications used to treat this problem include: Guaifenesin (which is plain Robitussin®), Albuterol® and Mucomist®. The latter two medications are usually administered via a Nebulizer; a Nebulizer is a machine that changes the liquid Albuterol® and/or Mucomist® into a mist, which is then inhaled via a mask.

Two other pieces of respiratory equipment may be helpful in battling thick phlegm—the suction machine and the cough-assist device. The suction machine may help in loosening and clearing sputum by placing a large catheter, or wand (called a yankeur catheter), in the front part of the throat. This both stimulates a cough reflex and some of the sputum will be suctioned out via the wand. The cough-assist machine produces a pressure that helps the person with weakened throat and mouth muscles produce a stronger, more effective cough. The Nebulizer, suction machine and cough assist device are usually covered under most health insurance policies. A respiratory therapist (RT) should be involved in teaching how to use the respiratory equipment properly.