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Making Your Own Smoothies for Feeding Tubes

Posted by:
Date: January 12, 2016

The smoothie is made for the entire day. How much you eat at one sitting will determine how much to make (4.5 cups is made each day because three 1.5 portions will be eaten during the day)

Here are the ingredients that are used in every smoothie – Protein powder (GNC pro performance bulk 1340 vanilla is what is being used currently, it dissolves in liquids very well) and peanut butter.

There are also 2-3 fruits and vegetables added to the smoothie. Vegetables usually need to be cooked for them to blend up well. Try to use fruits without little seeds as they can get stuck. Skins on fruits and vegetable are usually peeled off for ease of blending. Here are some common ones added – banana, avocado, spinach, oranges, blueberries (blend well), sweet potato, carrots, squash, apple, tomato, cantaloupe, pear. Use whatever is in season or frozen works well too. Defrost frozen fruits and vegetables to make blending easier. We don’t use things like broccoli and cauliflower because they cause heartburn.

The liquids used are 100% juice such as Naked brand kale blazer, carrot juice, and tomato juice. Also used are soy or coconut milk and coconut water.

It’s important to get a thin enough consistency to easily go through the extension set.

A regular blender will not work well. We use a Ninja and it works great. You need one that will really break up the fruits and vegetables.

Ninja-Blender-Complete-System


ASSISTIVE COMMUNICATION DEVICES FOR PALS: EVERYTHING YOU NEED TO KNOW

Posted by:
Date: February 7, 2015

Part 2: Assistive Communication Devices: High Tech, Low Tech and Everything In Between

What are Assistive Communication Devices?
Assistive communication devices include both electronic and non-electronic appliances that support or supplement speech for individuals who experience difficulties using their voice to communicate effectively. Part one of “Assistive Communication Devices: High Tech, Low Tech and Everything In Between” included a review of basic AAC concepts. In this article we will focus on devices most appropriate for people with Amyotrophic Lateral Sclerosis (PALS).

Speech generating devices (SGD) are computerized devices that facilitate expression of thoughts, feelings, wants and needs for anyone who cannot do so with natural speech. These devices are often used by people who are either born with a condition that prevents them from speaking effectively, such as autism, cerebral palsy, and genetic syndromes; or acquired conditions such as traumatic brain injury, stroke, cancer, paralysis, or neurodegenerative diseases such as Multiple Sclerosis (MS), ALS or Parkinson’s disease (PD).

SGDs produce recognizable speech based on manual selected text. The individual using the device simply selects from preprogrammed words and phrases, or uses the onscreen keyboard to create customized phrases and sentences that can be saved for future use. Most devices also use predictive text (as you enter a word, the computer will bring up words that are likely to come next in the message) in order to quickly locate words. As you use the device, it quickly learns the words and phrases you use most frequently and makes them readily available in order to speed up communication. Once you complete your phrase or sentence, the device will convert the text into audible speech.

Numerous SGD options are available from low-tech communication boards and writing pads that do not produce speech, to low-cost “apps” for tablets, phones and computers, to custom speech generating devices that speak phrases or sentences you create. Before choosing a device, it is important to understand how these devices will enable communication and the various different features and modalities that are available for individuals with limited strength and mobility. To watch a brief introduction to SGDs, click here: SGD with eye tracking.

Overview of “High Tech” Speech Generating Devices for PALS
For most PALS, a high-tech SGD is often recommended as it can accommodate the their changing communication needs such as decreased motor function (strength and mobility) over time. In addition, with most insurance companies, these devices currently can be “unlocked” to access texting, email, internet, telephone, and environmental controls (remote control of lights, TV, appliances). Several companies produce SGDs that can be fully customized, meaning they can work with all “multiple access” options including eye tracking. Two of the more well known companies are Tobii/Dynavox and Prentke Romich. Although there are many SGDs on the market, only a few of them can fully accommodate PALS’ communication needs that change over time. It is especially important that your long-term needs be considered when choosing a device as Medicare, Medicaid, and many insurance companies will only pay for one (1) SGD every five (5) years. Therefore it is paramount that you obtain a device that you can potentially ‘grow into’ and that has capabilities for eye-tracking should you ever need this option.

Many of these devices support multiple access or alternate ways to interact with the device to accommodate for limited or reduced motor function. For example, one person may touch selections on a screen or keyboard while others will make choices by simply moving their eyes (eye tracking). Some other types of access include:

  • Scanning: items are highlighted automatically by row or column. When the item you want is highlighted, you either touch the screen or a switch that will then lock in that choice. To see scanning and switches in action, click on scanning.
  • Switches: are devices that come in various shapes and sizes that can be used with any part of the body including the head, hand, finger, foot, knee, arm, cheek and even eyebrow. Some look like large round buttons and are used by those with imprecise movements while others are very small. For more details, click on switches.
  • Head mouse: utilizes a camera-like sensor device that is mounted to your computer or SGD and tracks head movement using a small reflector sensor that is worn on your forehead, nose, glasses or headband. The mouse arrow on your computer or SGD will mimic the movements of the head as you choose letters, words or phrases on the screen. To see this device in action, click on head mouse.
  • Eye tracking/eye gaze: this technology provides a way for people with little to no control of muscle movement to use their SGD. Sophisticated cameras in the eye gaze unit track retina (eye) movement as an individual scan sover the SGD screen with their eyes. When your eye movement stops or “dwells” on a word or phrase on the screen, that choice will be selected. For more information, click on eye tracking.

The voices on all speech generating devices (SGD) are either synthesized – which can sound less natural; or digitized – which sounds more natural as it is a recording of an actual person saying specific phrases

  • Digitized words and phrases are pre-recorded, loaded onto the device by the manufacturer and cannot be customized. Some newer devices allow you to record your own voice; however, this is limited to select phrases and greetings.
  • Synthesized speech devices allow you to generate original messages that are not limited to pre-programmed phrases. These devices link together individual sounds of the words chosen to create speech. Additionally, a synthesized version of your own voice can be uploaded for use on certain computer programs and SGDs through a process known as voice and message banking. This topic will be explained in detail in Part 4 in the coming months.

Speech Generating Applications (“Apps”)
Many text-to-speech apps are available for various programs and devices including Apple, Android, Windows and Kindle tablets and phones, and computers. It is important to note, however that not all apps are appropriate to meet the specific needs of PALS. While educating PALS about these devices in our own multi-disciplinary ALS clinic at the University of South Florida, we often come across PALS or family members who are satisfied with a particular app and are hesitant to consider more high tech options. This is understandable, as many “high tech” communication options are intimidating and take effort to use successfully. Speech-language pathologists will work with PALS to provide an explanation as to why high tech options may be more appropriate, as reduced strength and mobility starts to interfere with their current communication alternatives. Text-to-speech is likely appropriate for a period of time, but awareness and knowledge of more advanced options are very important.

In the past, it was acceptable for PALS to use apps exclusively until it became evident they needed a more advanced SGD with eye tracking to accommodate changes in motor function. However, due to the recent changes in Medicare that were discussed in Part 1, it is necessary that PALS begin the process of obtaining their SGD prior to being dependent on alternative communication methods. It should also be noted that private insurance companies often follow Medicare’s model so these changes may also effect those with private insurance coverage and should be factored into your decision-making process.

So, when is the right time for an app? If verbal communication and voice quality is fatiguing, burdensome and/or increasingly difficult apps can be very useful, especially while waiting for approval for a SGD, as the process can take several months. Also, those who are employed often want something to supplement their speech, but prefer a device that is more convenient and mainstream than a traditional SGD. For these individuals, using apps on tablets and phones you already own may be cost-effective, convenient and the most desirable transition. “High tech” options can often be daunting, so a simple pen and paper option may suffice initially. However, knowledge of alternative options will be useful once “low tech” options are no longer feasible (for example when handwriting and gripping pens become difficult).. In these cases, very user-friendly apps such as CommunicAide and Talk Rocket Go can bridge the gap between high tech and no tech.

Many of the apps featured on the Assistive Communication Devices chart that can be found by clicking on this link (patient resources), will accommodate multiple access options, with the exception of eye tracking. Currently, only Tobii’s communication software (Communicator 4 and Sono Keys) can be downloaded to your PC or Windows tablet and will support eye tracking with Tobii’s PC EyeGo tracking module. As discussed previously, the Tobii products are not covered by Medicare or private insurers when purchased independent of an SGD. However, you may be able to appeal this policy with your private insurance company.

Low Tech Communication Devices
For some PALS, typically those who are not savvy with computers, smart phones or tablets, SGDs hold little appeal. Fortunately, there are low tech options available to express thoughts and feelings, wants and needs. Often, PALS can effectively use pen and paper to express their thoughts and neeeds. For those PALS, the Boogie Board is a great option, as the writing board can easily be cleared for a new message with just a touch of a button. Communication boards are another low-tech communication option. These are stiff boards of varying sizes with printed alphabet and number grids, common words and phrases, as well as iconic symbols that you point to by using your finger, head pointer or a laser pointer attached to your glasses. (LINK OF eye glass laser pointer would be useful here) Communication using low-tech options may be more tedious, as your communication partner must first be aware you wish to convey a message and then follow along as you spell out words or point to the symbols. Flip books work on a similar principle to communication boards. These are spiral bound books with letters, numbers, simple phrases and pictures that can easily be used to convey a message, provided you can still manipulate the pages. Two drawbacks to low-tech devices are: 1) they do not generate audible speech, and 2) they do not adapt to meet PALS’ changing communication needs and physical limitations.

Which Communication Device is Best for Me?
Your speech-language pathologist will work with you to evaluate your current and future communication needs, assess any physical limitations, and gauge your comfort level with high tech SGDs.Typically, the best SGD for PALS is typically high tech option that supports eye tracking. There are several SGDs that fall into this category. Click this link (patient resources), and read the “Exploring Assistive Communication Devices for PALS” booklet for more information. Take the time to familiarize yourself with them either by viewing the company’s website or visiting your nearest Assistive Services & Technology Demonstration Center. For those PALS in Florida, this link is: www.faast.org At these specialized centers, professionals will gladly take the time to demonstrate the various high and low tech communication options and apps. They will often lend you an assistive device for up to 30 days so you can try the device out in your own home. In addition, the FAAST center also has many specially designed tools (for buttoning a shirt, pulling zippers, putting on shoes, and uniquely designed dishes and utensils) as well as aids for daily living (such as text-to-speech phones, large button remotes, foot-control computer mouse, switches, and mobility equipment) that you may find helpful when meeting the physical challenges of ALS.

Coming Up Next: Part 3 – Jumping through Hoops: A Guide to Getting Your Device

References:
Beukelman, D., Fager, S., & Nordness, A. (2011). Communication Support for People with ALS. Neurol Res Int, 2011, 714693.
Hecht, M., Hillemacher, T., Grasel, E., Tigges, S., Winterholler, M., Heuss, D., Neundorfer, B. (2002). Subjective experience and coping in ALS. Amyotroph Lateral Scler Other Motor Neuron Disord, 3(4), 225-231.

Authored by:
Lisa G. Hess, B.A. and Emily K. Plowman, Ph.D., CCC-SLP,
Neuromotor Speech and Swallowing Restoration Laboratory
University of South Florida
www.nssrlab.org


Assistive Communication Devices for PALS: Everything you Need to Know

Posted by:
Date: October 17, 2014

Part 1: Importance of Early AAC Evaluation and Implementation

You’ve recently been diagnosed with ALS and may be feeling overwhelmed by the multiple facets of the disease and how it will impact your life and family. One aspect that concerns many people with ALS (PALS) is the fear of losing the ability to communicate. Indeed, the potential loss of speech function was rated as one of the worse symptoms of the disease in a study that investigated the impact of ALS on mental health and daily living in PALS (Hecht et al., 2002). Fortunately, the advent of technology has afforded the development of a variety of communication devices, aides, and apps that can be utilized to promote effective communication in PALS.

The purpose of this four-part series is to provide education, guidance, and direction on Assistive Communication Devices for PALS (sometimes referred to as AAC devices). We will highlight the various technologies available to help you continue to communicate effectively with your family, friends, and health care providers. Specific and timely information will help you navigate the often complicated process to obtain an assistive communication device at the optimal time to make the transition to this method of communication as smooth and stress-free as possible. Our ultimate goal is to empower PALS with valuable and critical information to allow you to make educated decisions that will maximize your communication abilities across a variety of settings.

What are Assistive Communication Devices?
Assistive communication devices include both electronic and non-electronic devices that support or supplement communication for individuals who can no longer use their natural speech/voice to communicate effectively. Another term commonly associated with these devices is “AAC” which stands for augmentative and alternative communication devices and refers to any form of non-verbal communication used to express thoughts, ideas, wants, and needs. Non-verbal communication can include gestures, facial expression, sign language, pictures, symbols, and writing. Currently, there are many AAC options available to assist your communication including:

  • Low-tech communication boards and writing pads
  • Apps for tablets, phones, and computers
  • Custom high-tech speech generating devices (SGD) that speak the phrases you create

Many of these devices support multiple access or ways to interact with the device to accommodate limited or reduced motor function. For example, one person may touch selections on a screen or keyboard, others will press or push a large switch or button with a body part (hand, foot, elbow, head, etc.), while others will make choices by simply moving their eyes (eye tracking). A more detailed discussion of the various available technologies available will be discussed in Part 2 in the coming weeks.

My speech is fine. Why do I need to learn about assistive communication devices now?
PALS experience ALS symptoms in different ways, at different times, and at different rates that are largely dependent on the predominant disease onset type (spinal vs. bulbar). Although the rate of symptom progression is variable, the sequence of speech symptom appearance follows a predictable course (see: http://www.aacinstitute.org/Resources/Evidence/ALS/alsstages.html) and a reported 80-95% of PALS are unable to meet their daily communication needs using natural speech at some point during the disease progression (Beukelman, Fager, & Nordness, 2011). Given the importance of communication to PALS and the high percentage of AAC use; education and discussion of available non-verbal communication devices and aides is paramount for PALS. Unfortunately, however, there is a tendency for PALS, caregivers, and even medical professionals to wait for AAC consultation, evaluation and implementation until speech intelligibility and communication effectiveness is already impaired. There are a number of reasons why this is not an advisable approach and why consideration of AAC technology and evaluation should be discussed early in the disease before communication and speech intelligibility are compromised.
It is important to learn about assistive communication devices and obtain an AAC evaluation early before speech impairments are present because:

  1. Rapid Nature of Disease and Time to AAC Fitting:
    Although noticeable changes in speech and voice are variable in PALS, once speech intelligibility begins to decrease, it often deteriorates at a rapid rate resulting in limited time for implementation of AAC intervention (Beukleman et al., 2011). This rapid decline is further complicated by the lengthy process for the acquisition of a specialized and customized AAC device to fit your lifestyle and unique needs. In our center, for example, we have seen the process from referral to an AAC specialist to the delivery of an actual AAC device take anywhere from one month (best case scenario) to five-months (worst case scenario). Why does this take so long you might ask? Multiple steps and boxes that need to be ‘checked’ and this process involves coordination between your neurologist (referral), a specialized Speech Language Pathologist (AAC evaluation), your insurance company (billing) and the AAC vendor (AAC device). Typically, the process involves: 1) referral from your medical provider for an AAC evaluation; 2) the AAC evaluation is conducted by a specialist SLP; 3) the SLP writes up the AAC assessment and submits this and other required paperwork to your insurance company / Medicare for coverage; 4) approval is obtained from your insurance company; and 5) the AAC device is ordered and shipped to your home; and 6) a representative from the vendor may provide a home visit training session with you if you request it (highly recommended) and you begin to incorporate the device into your daily living. Any hiccup or glitch in any one of these steps can slow the process down. Given the time this can take, in addition to other factors listed in this article, we promote early referral for AAC evaluation in our multidisciplinary ALS clinic.
  2. Learning Curve for Your AAC Device:
    Like any new technology, there is a learning curve associated with efficient use of an AAC device. Therefore, it is strongly recommended that PALS obtain their device as soon as possible, while they can still effectively communicate using their natural speech. Having the ability to verbally ask questions or request assistance with the device during this learning curve reduces pressure, stress, and frustration for both the patient and the family members and minimizes the vulnerability associated with the potential loss of communication. One way to begin incorporating an AAC device into your daily practice is by using the device when your voice becomes fatigued. It is not necessary to begin using the device exclusively for all communication while your natural speech is still effective.
  3. Early Implementation Affords Ability to Voice Bank:
    If considered and acted upon early, PALS can take advantage of new voice banking technologies that afford the preservation of ones own voice that can be later incorporated and used on a SGD, I-pad, or android device to communicate (rather then use of a generic voice). This can be quite important for PALS because the human voice contains unique qualities that add a personalized and unique touch and help loved ones, friends, and even pets immediately identify the speaker. A new software program called Model Talker (http://www.modeltalker.org) is available to assist PALS in the process of voice preservation, otherwise known as ‘voice banking’. Voice banking works best with clear and intelligible speech, further emphasizing the need for consideration of future communication needs early in the disease process before there are noticeable speech disturbances. The voice banking process requires that a set of 1600 sentences be recorded and, therefore, is a considerable time commitment that typically takes six-eight hours. For best results, we recommend that PALS devote one hour a day over a two-week period to bank the required 1600 sentences. This minimizes fatigue and breaks up the arduous task into smaller, manageable chunks of recording time. After completion of these recordings, Model Talker converts the samples into a personalized synthetic voice that can be utilized by several assistive communication, I-Pad, and Android devices so that the speech generated sounds like you! Again, for best results it is necessary to capture your speech when it is the clearest and prior to the onset of any changes. Alternatively, if you have already noticed dramatic speech changes, a voice donor can complete the voice banking procedures so that you can use their personalized voice rather than the typical, generic, pre-recorded voices on SGDs.
  4. Impact of New Medicare AAC Regulations:
    If you are a PAL covered by Medicare, it is also important to learn about assistive communication devices early due to recent policy changes that significantly impact obtaining and using an AAC device. In April of 2014, Medicare classified assistive communication devices as standard durable medical equipment (DME). With this new classification, AAC devices are no longer purchased outright for PALS. Instead, devices are ‘rented’ for 13-months, and only after this 13-month period do you become the device owner. The practical significance of this change is staggering. First, under this new classification the device can be taken away from you if you are hospitalized, admitted into a long-term care facility, skilled nursing facility or hospice – that is to say, just when you would need it most. In the unfortunate event that this occurs, the device will only be returned to you after obtaining a Certificate of Medical Necessity from your physician and the rental time clock can be reset. Further, during the 13-month rental period, you cannot “unlock” all of the available features of the device which allow you to email, text, make phone calls or use environmental controls (lights, fans, TV, etc.) until the rental period is up. Therefore, these new stipulations encourage early referral and attainment of an AAC device for PALS in order to ‘kick start’ the 13-month time clock early in the disease process when you are less likely to be hospitalized (and have the device taken away). For more information on this topic see Medicare Advocacy. At the time of this article publication, these restrictions only apply to PALS with Medicare as their primary health insurance. It should be noted, however, that private insurance companies often follow Medicare’s model so this could become the reality for all PALS if this policy stays in place. To avoid these Medicare imposed restrictions, SGDs can be purchased directly from the manufactures, however, the cost of a high tech device equipped with eye tracking capabilities prohibits most from this option (approximately $15,000). For those interested in this option that already own a laptop computer or tablet (compatible with Windows Pro 8) the software used on the high tech SGDs can be purchased and installed onto your personal device (Tobii Communicator 4 software and Tobii PC Eye Go) for approximately $2,300. While this option is not covered by insurance, it is nearly equivalent to the 20% co-pay required by Medicare, so it may be an alternative option for your consideration. The advantage is you would own the device (laptop or tablet) and would not be subject to any restrictions. In addition, your device is smaller, lighter, and more portable than most of the SGDs with eye tracking currently on the market. See teamgleason.org for a video of this system in use. At this time, many SLPs and organizations such as the ALS Association, The Center for Medicare Advocacy, the American Speech-Language Hearing Association (ASHA), as well as 170 other organizations have taken action to try to change Medicare’s policies regarding speech generating devices. Please visit these websites for ways you can help to support change:

ALS Association: Advocacy
The Center for Medicare Advocacy

Conclusions.
Most PALS will require AAC devices to supplement or replace verbal communication at some point during the disease progression. In Part I of this series we highlight the importance of EARLY education, evaluation, and implementation of AAC technologies to empower you and enhance your communication effectiveness. Early AAC implementation is necessary because:

  • The rate of speech decline in ALS is fast
  • The process to obtain an AAC device can be timely
  • Facilitates the associated learning curve and allows for gradual and stress free use into every day living
  • Those with Medicare coverage can get that 13-month clock ticking and take ownership of the device sooner

For a link to a free downloadable educational booklet on AAC devices, visit our laboratory website at www.nssrlab.org and click on ‘patient resources’. In our next edition we will detail currently available devices from low-tech to high-tech and everything in between!

References:
Beukelman, D., Fager, S., & Nordness, A. (2011). Communication Support for People with ALS. Neurol Res Int, 2011, 714693.
Hecht, M., Hillemacher, T., Grasel, E., Tigges, S., Winterholler, M., Heuss, D., Neundorfer, B. (2002). Subjective experience and coping in ALS. Amyotroph Lateral Scler Other Motor Neuron Disord, 3(4), 225-231.

Authored by:
Lisa G. Hess, B.A. and Emily K. Plowman, Ph.D., CCC-SLP,
Neuromotor Speech and Swallowing Restoration Laboratory
Departments of Communication Sciences and Disorders and Neurology
University of South Florida
www.nssrlab.org