Get the Facts on ALS

Amyotrophic lateral sclerosis, also known as ALS, affects the nerve cells that control voluntary muscle movements. This progressive condition can ultimately affect an individual’s ability to walk, talk, breathe and chew. While there is no cure for ALS, there are ways for an individual to live comfortably and independently, ensuring the best quality of life. Complex rehab wheelchairs, such as the Edge 3 Stretto™, provide mobility, support and positioning for a person affected by ALS. Read on to learn more about the Stretto, the perfect ALS wheelchair choice!

Benefits of a 20 Inch Wide Wheelchair

The Edge 3 Stretto is the narrowest, most maneuverable power case in America. This 20 inch wide wheelchair can navigate small spaces and tight corners in the home. With an overall width of just 20.75 inches when 12.5-inch drive wheels are selected, the Stretto offers a narrower footprint. Every other chair is at least 2.5 inches wider than the Stretto! This ALS wheelchair is compatible with TRU-Balance® 3 Power Positioning Systems, which can be fully customized to meet the ever changing need of a person living with ALS. The Stretto comes standard with great features, such as LED front and rear fender lights and a USB charger. The Stretto is also equipped with independent SRS (Smooth Ride Suspension), to deliver a comfortable ride to ALS patients.

The ALS Community

Jay Smith in his Edge 3 Stretto

When faced with an ALS diagnosis, it’s important to have the facts about the condition. Be sure to have detailed discussions with your doctor and ask as many questions as you can. If you want to do more research, make sure you are obtaining factual information. There are a lot of misconceptions about ALS. Jay Smith, the founder of Every 90 Minutes, has ALS and uses a complex rehab wheelchair to maintain a better quality of life while living with the disease. You can also get involved with the ALS Association and other organizations that are working hard to assist those affected by ALS.

Amyotrophic Lateral Sclerosis Caused by Sports?

There is a common myth that ALS is caused by playing sports. There is data suggesting that football players are at a higher risk in developing amyotrophic lateral sclerosis but more research needs to be done to determine how widespread the risk is for other contact sports. Incomplete research indicates that careers in professional sports may increase an individual’s risk of getting ALS due to the trauma athlete may experience to their nervous systems. Again, this research is incomplete. Also, most people who get ALS are relatively inactive. Some consider whether exercising makes ALS worse but neurologists believe that muscle activity will not worsen the condition. While exercising may make an individual with ALS tired quickly, there is no evidence suggesting that exercise speeds up the disease.

Companies Do Not Care About Finding a Cure?

Because there are so few drugs available that slow the progression of ALS, people believe that companies don’t care about finding a cure. This is a misconception. Currently, only two FDA-approved drugs exist for ALS. These drugs can only moderately control the disease. There have been many clinical trials of medications that are designed to slow ALS but none have worked. There is so much of the disease that we don’t understand. Even with these setbacks, more and more pharmaceutical companies are interested in ALS and are equipped to conduct research and clinical trials. Research in ALS is mostly funded by the National Institutes of Health and other nonprofit organizations.

Read our previous blog for more facts on ALS.

Time

Time is defined as, “the measured or measurable period during which an action, process, or condition exists or continues.”  There are many sayings that relate to time.

  • “Time is money.” – Benjamin Franklin
  • “Time waits for no one.” – Folklore
  • “Lost time is never found again.” – Benjamin Franklin
  • “Time is the most valuable thing a man can spend.” – Theophrastus
  • “Time is the wisest counselor of all.” – Pericles
  • “There is one kind of robber whom the law does not strike at, and who steals what is most precious to men: time.” – Napoleon

Time is a constant, yet as the world that we live in becomes more demanding than ever, we spend less of it doing what in hindsight seems to be the most precious of commodities.  For supplier/ATPs and therapists, we have seen the trend of increasing requirements for timeliness, all while increasing our caseloads and productivity requirements. So, where does all the time go?  As the global CRT community endures changes in the past six months due to the pandemic, funding changes, new product launches and a new emphasis on telehealth, it’s easy to try and stick to your comfort level and past experience when it comes to the service delivery model of CRT equipment.  You have likely heard the saying, “We have always done it this way.” This saying resonates with me and the CRT industry now more than ever. 

“The times, they are a changing.” – Bob Dylan

 The CRT community has been hit from all sides over the past few years and we have overcome most all of the barriers set in our path.  There are many processes that can be revamped to increase efficiencies, timeliness, and overall outcomes of the CRT service delivery process.  Some concepts that have not changed are the time it takes to complete an in-depth evaluation; how long it takes a new user to understand and use their recommended mobility equipment safely and efficiently and the duration and number of visits that a developmentally challenged child requires to comprehend mobility. With the numerous time-saving opportunities that are available to CRT to increase efficiency, the factors that you cannot change are human.  Over the past decade or two, I have noticed a decrease in time associated with the evaluation, documentation, delivery and fitting as well as follow-up training. I’m certain that part of the culprit is the high demands of the world that we live in, both professional and personal. 

My hopes are simple and are in line with the clients that we serve day in and day out. When it comes to our clients, their goals regarding independence and function must always be paramount. If we continue to decrease the amount of time that we spend with each specific client, there is no telling where the landslide will end. We all struggle to ensure that we are distributing our time appropriately with all our responsibilities.  In CRT, we pride ourselves ion creating custom mobility solutions for individuals with a wide array of capacities and limitations.  How can we ensure the best outcomes if we don’t spend the most valuable time focusing on clients’ specific needs? I doubt that you would disagree with me on the client-centered approach, so let’s do what Mahatma Ghandi said and “be the change that you wish to see in the world.”

What I really want to impress upon folks is that you can cut time with operations and procedures, but you should never cut time out of the client assessment. It is the most important component to the recommendation process.

“The time for action is now. It’s never too late to do something.”  — Antoine de Saint-Exupery

J.B. Radabaugh, CTRS, ATP/SMS
Clinical Education Manager Eastern U.S.
Quantum Rehab

About J.B. Radabaugh: J.B. is a recreational therapist, ATP/SMS and the Clinical Education Manager for Quantum Rehab in the Eastern U.S.. In his spare time, J.B. enjoys watching his two daughters grow, backpacking, camping and fly fishing.

Is Our New Normal Increasing Continuity Through the Multidisciplinary Mobility Evaluating Team?

With all the challenges that 2020 has brought to our doorstep, one that stands out to me specifically regarding the CRT industry is a change in the evaluation process.  With telehealth evolving in the CRT space, I’m sure many of you have found yourselves in a “non-traditional” mobility evaluation. While I see a rise in new techniques to bridge the social distancing as well as physical-location gaps, I also see a stronger multidisciplinary team approach emerging. 

Many of you have worked closely with your ATP/supplier and/or LCMP in the past, which is always a preferred method for mobility evaluations.  I see this team approach to be more important than ever. How do you ensure proper outcomes when only one team member is physically with the patient?  This conundrum affects all parties. For the LMCPs, how do you ensure that you can effectively document the physical needs of your client?  For the ATPs/suppliers, how do you ensure that the measurements taken and the environmental considerations are all factored in?

Teamwork

I have made many remarks in the past about the importance of a strong “marriage” or relationship between supplier and clinician. This relationship is built on trust, knowledge, skill set and follow through. Just like any relationship outside of work, you are only as strong as your weakest link as you rely on each other’s specific skill sets to combat whatever shortfalls you may have in your own knowledge and/or comfort levels.  With the evolution of the telehealth mobility evaluation comes a need for cross-training or education regarding each other’s roles.  A great marriage understands the other team member’s needs. It is important for an ATP/supplier to have the knowledge base of the physical body and its workings, so he or she can act as an extension of the clinician’s hands if the LCMP team member is not present. Everyone must search for the same information. Alternatively, it is imperative that if the LCMP is working without an ATP/supplier by their side, then they need to understand the physical measurements required to create a custom figured mobility solution and how the seating system and postural support components are likely to increase or decrease the client’s function.

The Goal

With all of the changes that we have witnessed in our daily lives, there is one thing that remains the same.  The client’s NEEDS.  You don’t just “sort of need” a complex wheelchair or mobility device.  Our true north has not changed.  Our clients are the singular component that keeps us all coming back.  We need to ensure that we continue to keep our client’s goals, wishes, hopes and dreams as they relate to mobility and seating at the forefront.  It is a challenge to work under this new telehealth umbrella. This doesn’t mean it cannot be done well or without the same outcome expectations you have had before.  It just means that choosing your work-life partner or partners may carry a heavier weight than before. 

NRRTS has released a decision tree for your reference regarding telehealth and CRT evaluations. Please see below.

Courtesy of NRRTS

J.B. Radabaugh, CTRS, ATP/SMS
Clinical Education Manager, Eastern U.S.
Quantum Rehab

About J.B. Radabaugh: J.B. is a recreational therapist, ATP/SMS and the Clinical Education Manager for Quantum Rehab in the eastern U.S. In his spare time, J.B. enjoys watching his two daughters grow, backpacking, camping and fly fishing.

Measure Twice, Cut Once

As a young boy, my father instilled in me a very simple concept that has been a saving grace too many times to list. This concept has many different applications, including CRT. The concept is to measure twice before creating/recommending a complete CRT mobility device to ensure accuracy and thorough thought.  In CRT, the multidisciplinary team takes anatomical and physical measurements for the recommendation of the seating system during their wheelchair assessment.  A properly recommended mobility device also requires independence to use this device in the home, as well as any additional environments of anticipated use. The question that comes to mind is, “Why do we need two sets of measurements?”

  1. Let’s break down the reasoning behind both sets of measurements.The anatomical or evaluation measurements are meant to document the physical abilities, limitations and uniquities that each of our clients possess. 
  2. The home assessment measurements are put in place to ensure a proper match of equipment to the individual’s environmental needs. The recommended equipment should easily maneuver throughout the home and allow for increased function and independence in the completion of MRADLs. The home assessment guidance supplied by CMS is as follows:

Prior to or at the time of delivery of a POV or PWC, the supplier or practitioner must perform an on-site evaluation of the beneficiary’s home to verify that the beneficiary can adequately maneuver the device that is provided considering physical layout, doorway width, doorway thresholds, and surfaces. There must be a written report of this evaluation available on request.

Within the home assessment guidance supplied, it states that the home assessment can be completed for documentation purposes during or prior to the time of delivery. This means that there are patients receiving CRT equipment that may not have been trialed in their home until after the equipment had been purchased and assembled at delivery. What happens if we discover the slope of the ramp is too steep for the equipment to safely navigate? What if the carpeting is too thick for the individual to be independent in propulsion? What happens if doorways in the home do not allow access to necessary rooms in his or her residence? What happens if the client is unable to gain access to all required customary locations to complete their MRADLs (Mobility Related Activities of Daily Living), such as toileting, feeding, dressing, grooming and bathing?  

I can speak to any of the above happening on a regular basis throughout the industry. It’s nearly impossible to comprehend how a client intends to use his or her equipment unless you are there to witness the environments, see what limitations can be overcome by a change in recommendation to some or all physical components that were originally recommended at the mobility evaluation. This is the reason that you must always measure twice and cut once. This allows you to focus on the client’s goals, hopes and dreams and come up with the best equipment to meet his or her physical and functional needs as well as life and functional goals.  Would you have a new kitchen installed in your home by a contractor that has never been there to understand the layout and talk you through the available options?  I think not.

J.B. Radabaugh, CTRS, ATP/SMS
Clinical Education Manager, Eastern U.S.
Quantum Rehab

About J.B. Radabaugh: J.B. is a recreational therapist, ATP/SMS and the Clinical Education Manager for Quantum Rehab in the Eastern U.S. In his spare time, J.B. enjoys watching his two daughters grow, backpacking, camping and fly fishing.

The Truth About ALS

If you or a loved one has been recently diagnosed with amyotrophic lateral sclerosis, or ALS, you may have a lot of questions. While there is no cure for ALS, there are options to help individuals maintain the best quality of life possible. Many ALS patients will eventually require custom wheelchairs or an ALS wheelchair, such as the Edge 3 Stretto™, to provide mobility, positioning and support.

Consider an ALS Wheelchair

Jay Smith in his Edge 3 Stretto

As the narrowest, most maneuverable power case in America, the Stretto can easily navigate tight corners and small spaces with an overall width of just 20.75 inches with 12.5-inch drive wheels. Every other chair is at least 2.5 inches wider than the Stretto! Learn more about the features of the Stretto and why it is an excellent ALS wheelchair choice.

While there is a lot of information available on ALS, it’s important to get the whole picture.  You can read more about some of the common symptoms of ALS and see how others living with the condition have benefitted from Quantum® complex rehab wheelchairs. While there is a lot of information available on ALS, it’s important to know the facts about this disease.  Here are some commonly misconceptions about amyotrophic lateral sclerosis.

Facts About Amyotrophic Lateral Sclerosis

ALS can generate symptoms such as fatigue, muscle weakness or twitches. These symptoms are similar to those of Lyme disease. Fact: ALS is not caused by Lyme disease or other infections. Unlike ALS, Lyme disease is treatable with antibiotics. Generally, a neurologist can easily tell the difference between Lyme disease and ALS, whether through an examination or testing.

There is a lot of inaccurate information on ALS. One commonly held myth is that ALS only affects motor activity and that the minds of individuals with ALS remain sharp during the course of the disease. Newer studies show that approximately 20 to 30 percent of ALS patients develop a mild cognitive impairment.

Another common misconception about ALS is that only older people can get it. This fallacy comes from the observation that older people get degenerative diseases like Alzheimer’s, Parkinson’s and ALS, and older individuals living with these conditions often become the public face. The truth is that the median age for the onset of ALS is only 54. Additionally, Lou Gehrig was diagnosed with amyotrophic lateral sclerosis in his 30s. When it comes to ALS, the age range is large.

Getting an Edge on Work and Life

With another busy workday ahead of her, Isabella Bullock needs just two things to keep her moving: an iced coffee and her Edge® 3 with iLevel®!

A native of Belleville, Michigan, Isabella (or Izzy for short), was born with spastic quadriplegic cerebral palsy. Today, as a working professional, Izzy knows the value of her independence. She has excelled to new heights in her career thanks to iLevel technology on her power chair.

“I love the freedom iLevel gives me,” Izzy said. “The ability to move at walking speed allows me to communicate with others at eye level without losing momentum.”

With iLevel, Izzy is completely mobile without any help from friends or family. At home, she can reach her kitchen cupboards. iLevel is beneficial in the workplace too, as Izzy uses seat elevation multiple times a day in her job as an employment specialist for the Center of Independent Living.

“I am able to use the Xerox machine independently and communicate with coworkers and clients without being looked down upon,” Izzy said. “The ability to be elevated and stroll down the hallway is one of the best feelings.”

Not only does she assist individuals in obtaining skills they need to become employed, Izzy connects her clients with community resources that can help people with disabilities live their best lives.

“I love seeing people with disabilities succeed and shatter the glass box society puts us in,” Izzy said.

In addition to her work at the Center of Independent Living, Izzy is a Q Roll Model for Quantum. She is an iced coffee enthusiast and enjoys getting lost in a good book.

Quantum ALS Wheelchairs

The thought of living with an ALS diagnosis may be overwhelming. When it comes to your mobility and quality of life, there are many things to consider. Power wheelchairs for those with ALS provide mobility and a better life quality by fully supporting medical needs, while ensuring a more active lifestyle.  

Understanding an ALS Diagnosis

ALS is a neurodegenerative disease affecting nerve cells and motor neurons. Over time, the brain is unable to control affected muscle tissue. ALS, also known as Lou Gehrig’s Disease, is a progressive condition, with symptoms worsening over time. ALS symptoms may start out with muscle weakness and stiffness that worsens over time. As the disease progresses, patients begin to experience wasting and paralysis. In later stages, individuals lose muscle control over critical body systems.

Benefits of an ALS Wheelchair

To provide the best quality of life possible, Quantum® custom wheelchairs are designed to accept a full range of seating, positioning, and electronic components. The Edge 3 Stretto™ is an excellent ALS wheelchair. With a narrow overall width of 20.75 inches with 12.5-inch drive wheels, the Stretto offers a narrower footprint, ensuring greater access to all areas in the home. Equipped with independent SRS (Smooth Ride Suspension), the Stretto also delivers a smoother ride with increased shock absorption due to the angle of the shocks. 

Jay Smith in his Edge 3 Stretto

If you are looking for ALS wheelchairs with power elevated seating, the Edge 3 Stretto is the perfect solution. The Stretto is available with optional iLevel® technology, enabling ALS patients to elevate their custom wheelchair seat up to 12 inches. Power elevated seating provides greater access, reach and independence. Individuals can also drive at 3.5 mph while elevated. iLevel’s Extra Stability Technology® enhances safety during Mobility Related Activities of Daily Living (MRADLs), such as grooming, toileting and transferring.

Custom Wheelchair Drive Controls

Due to the progressive nature of ALS, individuals may benefit from Q-Logic 3 Advanced Drive Controls, which is adaptable and expandable. Standard with Bluetooth® technology, Q-Logic 3 on Quantum custom wheelchairs allows users living with ALS to operate their tablets or smartphones using the controller. As symptoms progress, Q-Logic 3 can be adapted with alternate drive controls, such as a head array or switched driving, making it easier for ALS patients to maintain their independence.

All You Need to Know About Para-Badminton

Many sports have been adapted for inclusivity of people of all abilities. Para-badminton is a racquet sport played by men and women of any age with a physical disability, including: spinal injury, multiple sclerosis, spina bifida, cerebral palsy, scoliosis, hip dysplasia, amputations, leg length difference, upper limb amputation or impairment and short stature. The sport has been growing in popularity for some time, making a Paralympic debut in the 2021 Summer Paralympics in Tokyo.

Para-badminton Rules

Like badminton, para-badminton is played on a rectangular court separated by a net. Para-badminton can be played in singles (men/women), doubles (men/women) and mixed doubles. The aim of para-badminton is to send a shuttle, also known as a birdie, from one side of the net to the other using the racquet, preventing the opposing team from touching the shuttle.  

Each time the shuttle touches the ground before the opposing team can get it, your team scores a point. In order to win the game, your team needs to score 21 points. If both teams are at a tie for 20 points, the side that gains a 2-point lead first wins the game. A para-badminton match consists of three games of 21 points. Whichever team wins the best of the three games wins the match.

Para-badminton Classification System

Much like other adaptive sports, para-athletes are divided into different sport classes to ensure fairness in competition. Para-badminton classifies athletes into six sporting classes:

  • Wheelchair 1 (WH1): Wheelchair users with a severe impairment in both lower limbs and trunk function.
  • Wheelchair 2 (WH2): Wheelchair users with a less severe impairment in one or both lower limbs and minimal or no impairment of the trunk.
  • Standing Lower 3 (SL3): Athletes with impairment in one or both lower limbs and poor walking/running balance but can play standing.
  • Standing Lower 4 (SL4): Athletes with less severe impairment in one or both lower limbs and minimal impairment in walking/running balance but can play standing.
  • Standing Upper 5 (SU5): Athletes with upper limb impairment that can play standing.
  • Short Stature 6 (SS6): Athletes with a short stature due to a genetic condition, commonly referred to as “dwarfism”.

Getting Started with Para-badminton

Whether you are looking for a coach or league to play badminton in your community, you can find a local program in your area by visiting teamusa.org. For more information about badminton, visit USABadminton.org.

All About Adaptive Archery

Archery has been adapted so that individuals of all abilities, ages and genders can participate. Adaptive archery is much like traditional archery in that the athlete uses a bow to aim and propel an arrow to hit a target. This adaptive sport is especially inclusive because athletes with various physical or cognitive impairments can easily compete alongside athletes of other abilities, as opposed to team sports like sled hockey and power soccer.

Getting Started with Adaptive Archery

Adaptive archery doesn’t require special coaches or classes but may require equipment with modifications. However, you don’t have to commit to purchasing all of the equipment you need before trying the sport out.  Instead, call an archery range near you and see if they offer rentals.  That way, you can try out different types of equipment and see what you feel most comfortable with before making an investment.  If you live near a Move United chapter and take lessons, required equipment is included in the lesson fee.

Adaptive Archery Equipment

There are two types of bows to choose from: recurve and compound. Both options feature different advantages and both can be modified for use by adaptive athletes.

A recurve bow is comprised of a single bow body and a string that connects to the ends of the body. This is a very simple and effective design, making it a great option to start. This bow is also known as a traditional bow.

Compound bows consist of a smaller body that’s constructed from aluminum or carbon fiber. The ends of the body feature pulleys and strings are run through them.

Two common modifications to bows are mouth tabs and harness releases. A mouth tab allows athletes who have use in one arm to pull back the bowstring with their mouth. This modification can easily be made at home.

A harness release is a custom-made shoulder harness that’s attached to a mechanical release aid. Since the harness needs to be fitted to the archer, you can’t find them available in retail stores. You or someone you know will have to make the harness yourself.

Adaptive Archery Competitions and Events

If you find that you like adaptive archery and want to compete, you can try to go for competitions like the U.S. Paralympic or World Championship teams. Although you can compete against able-bodied archers, if you decided to go for a para-specific competition, you are placed into a classification or sports class to ensure fairness in competition. For more information on para archery classification, visit usarchery.org.

Learn more about other adaptive sports that you can play. You can also find more articles about adaptive sports on our main website.

A Beginner’s Guide to Sitting Volleyball

Sitting volleyball is a form of volleyball that is adapted for people with disabilities. This adapted sport is played similarly to traditional volleyball, with a few modifications to the rules, making this sport playable for people of all abilities.

In this adapted version of volleyball, the net is about 3 feet high, and the court is 10 x 6 meters with a 2-meter attack line. The teams play on each side of the court, which is divided into 5 meters deep by 6 meters wide. The net height is set at 1.15 meters for men, and 1.05 meters for women.

History of Sitting Volleyball

Sitting volleyball was invented in 1956 as a combination of volleyball and a German sport called sitzball.  This served as a rehabilitation sport for injured soldiers. Two years later, the first international sitting volleyball contact was held between Germany and Dutch club teams. Sitting volleyball was officially included in the Paralympic games at Arnhem in 1980. Women’s sitting volleyball was added for the Athens 2004 Paralympic Games.

Sitting Volleyball vs Traditional Volleyball

In both sitting volleyball and traditional volleyball, each team is allowed up to three contacts with the ball before returning it to the opposing team’s side of the court. Like traditional volleyball, each match is the best of five sets, played to 25 points, but you have to win by two.

Even though the rules in sitting volleyball are similar to those in traditional volleyball, there are some differences. For instance, one “cheek” must always be in contact with the floor, including whenever players make contact with the ball. Standing and taking steps are not permitted. However, a short loss of contact with the court is permitted when making a defensive play in the back zone to save a ball and when making a defensive play in the front zone.

Get Started: Finding a Sitting Volleyball Team

Whether you are looking for a local team to play for fun or you’re looking to compete, check out teamusa.org and the Paralympic Club Directory for more information. You can also see if there is a Move United chapter in your area by going to moveunitedsport.org.

Alternatively, you can contact your local parks and recreation department to see what information they can offer you.

Would you rather try a different sport? Learn more about adaptive sports.