Ask Ben: How To Widen A Bathroom Door For Wheelchair Access?

ALS Assistive Technology BannerOur bathroom door is too narrow for my mother to get in with her wheelchair. I heard you speak at a support group, where you mentioned something that widens a doorway. What was it?

– Joanna, Westchester, NY

An offset hinge. This is a simple solution, that can add 2″ to the width of a doorway (it doesn’t have to be the bathroom). When a doorway is built, you get a matching door to fit. A 26″ door fits in a 26″ wide doorway (adding a 1/4″ for spacing). So a 25″ wide wheelchair will fit through this 26″ wide doorway, right? Wrong. The measurement you really are looking for is not the width of the doorway, but the doorway clearance. The unblocked space of the doorway. When you open a door, the edge of the door, right along the hinge, is blocking part of the doorway. A door edge can take up 2″. So in the example provided, a 24″ wide wheelchair might just scrape through, but a 25″ wide wheelchair will not make it.

An offset hinge replaces the existing hinge. Same holes, same location, same purpose, swinging the door in and out of the doorframe but the unique design of an offset hinge is that it opens the door past the doorframe, not inside the doorframe. You gain 2″ of clearance, and have access to the entire width of the doorway.

There are only two conditions that need to be taken into account when considering an offset hinge. First, there needs to be 2-3″ from the existing hinge to the next wall. If the existing doorway is right up against the wall, there is no room to place the offset hinge. Second, an offset hinged door will swing 2″ further into the room. If there is open space in the room, the larger door swing is unimpeded. But if the current door swings very close to a sink or other fixed position item in the room (less than 2″), using an offset hinge will cause the door to bump into that object, and not open the doorway fully. It may still open the doorway more than a standard hinge, but you would have to measure this out in advance.

Offset hinges may be found in some hardware stores, though many will not know what you are referring to. Large warehouse chain stores have them on-line, as do several on-line hardware websites. Search for offset hinge or swing clear hinge.

– Ben

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. To ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.

Ask Ben: What Is The Proper Placement For Shower Bars?

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My husband is beginning to be nervous about standing in the shower. He had Bulbar ALS, but it is now affecting his walking. We have a walk-in shower, and he can still step in himself. But since he has fallen outside the house a couple of times, we want grab bars to keep him steady in the shower. Where do you recommend we place them?

– Iris, Nassau County.

Iris, Your question focuses on grab bar placement, but it also is about safety. There are specifications for grab bars: 1.5-inch in diameter, 1.5-inch away from the wall and any other object (so your fingers don’t get squeezed), 33-36-inches above the floor as a starting point, but the height of a grab bar really depends on the person’s height and arm length, and of course needs to be properly secured to the wall. I would suggest a textured finish to provide a better grasp. A vertical grab bar can be placed at the entry point to the shower, and another one placed horizontally along the wall opposite the shower door.

While grab bars can certainly add a degree of confidence and stability, they do not replace balance. A couple of falls is an indicator to start thinking of sitting when showering. Grab bars transfer the body’s ability to stay standing, from the legs to the arms. The potential for a fall is still present. Sitting reduces the potential for an accident. Folding bath seats may be attached to the wall, or a portable bath seat can usually be placed, inside a shower area.

Another circumstance to consider with walk-in showers is the lip to step over. Should it be difficult to step over the lip, and the entry way is wide enough, you can remove the glass shower door and replace it with a shower curtain. This will allow a tub transfer bench to straddle the shower lip. You can then sit on this bench outside the shower, and slide over the lip while still sitting. Raising your legs while sitting is easier than stepping over the lip and holding onto a grab bar. You’ll have to be creative to place and cut the shower curtain to minimize water spraying out of the shower area.

Grab bars do provide some stability, but a seat reduces the risk of falling.

– Ben

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. To Ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.

Ask Ben: Switching to a Switch When Using a Computer

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ALS is affecting my arms and I am finding it more difficult to get on the computer. I’m so used to doing everything with my computer but now I find I have to think about it. I can still use the keyboard and mouse. Is there anything that would make it easier?

– Bill, Nassau County, NY

Switch to a switch. The operation of a mouse by hand is really an intricate process. First we clasp the mouse, then we slide it left/right or further/closer to move the cursor, and then we click. All designed to tell the computer that wherever the cursor is that’s what you want to activate. There’s a lot going on with the hand and all revolving around one object: a mouse.

There are track balls and joysticks to replace the mouse and more easily move the cursor around the screen. But I want to focus on the click, that small finger movement. The difficulty is that with a mouse or trackball, the ‘click’ apparatus is in the same component. As dexterity diminishes you want to separate those functions.

There are simple USB attachments that allow ‘clicking’ with a switch. A switch is just a button (they come in various sizes.) You still move the cursor with the mouse or trackball, but the ‘clicking’ part can now be done by a separate switch. Since the switch is operating independent of the mouse, you can place it under your other hand, behind your head, in your lap. Anywhere you have comfortable consistent movement.

Here are two items to consider. Let me know if you have any other questions about access to computers:

– Ben

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. To ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.

Ask Ben: Trying Speech Devices Before Buying

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I cannot walk or talk, but I use my computer a lot with scanning and a switch placed under my right pointer finger. Is there anything that will help me type faster?

– Mike, New Jersey

(Mike uses an alphabetical keyboard because it helps him know where each letter is. Alphabetical keyboards list the letters in alphabetical order, while a QWERTY keyboard layout, the letters are in no apparent order and requires greater observational skills to anticipate the location of each letter. )

Ultimately, the only way to tell which way is best, is to put them to the test. Pick a sentence from a song, or a famous quote. Spell it out five times using a QWERTY keyboard. How long did each time take? Was there improvement? Now try an Alphabetical Keyboard. How long did it take? Was there improvement?

Mike found the alphabetical keyboard was faster for him. But there’s a third keyboard, very underutilized, called Frequency of Use. The location of the letters on the screen, is dependent on the use of that letter in general. Vowels are more common than a Q or Z, T is more common than a W, etc.

Standard row/column scanning, highlights each row going down, and then each column going from left to right. A Frequency of Use keyboard places the most common letters (A, E, O, T) in the upper left area of the keyboard. This reduces the time needed to spell your word when scanning. Even for partner assisted communication where someone else is pointing to the letters, a Frequency of Use layout can reduce the time it takes to communicate.

– Ben

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. To ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.

Ask Ben: Options For Voice Banking

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My mother was recently diagnosed with ALS. She is still able to speak, but you can see from slight changes in her walking that the ALS is beginning to affect her. Even her speech, though fully understandable is slightly different. We would like to record her voice for a time when she may no longer be able to be understood. Is voice banking the best way to do that?

— Annie, Middlesex, NJ

Before discussing what’s best, let’s clarify some terminology. Augmentative Communication devices typically use a computer generated voice. Male, Female, even children’s voices are available. The quality of these voices have improved immensely over the years. Voice banking is the process of storing one’s own voice. So when an augmentative communication device is used, the voice you hear is the voice of the person who previously recorded their voice.

There are two voice banking options. One is recording your voice outright. ‘How are you’, ‘Let’s go to the park’, ‘lift my leg, please’. You would anticipate the messages, names, phrases, you want stored, and record each one. This is considered Digitized Speech. The 2nd Voice banking option is Synthesized Speech. You create a computer file of all the sounds your voice makes from the alphabet and combinations of letters. These sounds then are ‘synthesized’ (by a computer program) to form words, using each sound from your voice.

For the outright recording, digitized speech, words and phrases are recorded on a computer, and saved as a .wav or .mp3 file. You then can program each file to a specific location on the screen of a computer, and you have created a touch screen with multiple .wav or .mp3 recordings. One screen can store and play multiple recordings. This is an easier way to go. Simply record the words and phrases you want over time. The limitation is that it is not a natural way of communicating. Our language is complex and we constantly interject unique words and phrases.

Sound Recorder on Windows is a simple way to store your own recordings.

Audacity is a more complex program for recording words and phrases.

The Synthesized method takes more time. ModelTalker is the primary program used to create one’s own voice file. It request 4-6 hours of speaking specified sentences into the computer. The program then creates a voice file that can be used on some augmentative communication devices. The versatility of this method is that anything you spell on the device, pre-programmed or unique is now spoken with the voice sounds of the person.

What’s best? It’s really up to you. Know that the communication devices as they come now have very understandable and good quality voices. If it is important to have a device use your own voice, look into ModelTalker. That will give you the most versatility. If you are not up for several hours of recording, use the digitized recording methods and identify specific phrases you want to record.

Please contact me with any questions about voice banking or augmentative communication.

– Ben

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. To ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.

Ask Ben: ALS Patients Using Morse Code to Communicate

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I was diagnosed with ALS two years ago. My family usually understands what I say, but even they at times don’t understand me. The dexterity in my fingers has diminished, and it takes more effort to type out messages on a speaking keyboard. Is there something simple that can help me communicate?

— John, Westchester

John, there certainly are numerous options available from switch scanning, to eye-tracking, or even a small letter board. But I’m going to focus on an overlooked solution that has recently been made available through apps for Android and Apple.

If you can tap in one place, using one finger or two, you can use Morse Code. Yes, it requires learning 26 tap combinations, but you can have a printout nearby. Combinations of 1, 2, 3, or 4 taps on the screen creates each letter.

Many touch screen communication devices have Morse code available, though it is a rarely used feature. Morse code apps can be downloaded for smart phones or tablets, free or at nominal cost.

Here are a few suggestions for Apple iOS and Android:

•  Morse-It (iOS)
•  Morse Key (iOS)
• Morse Code Trainer (Android)
•  Morse Code App (Android)

It might be worth a try, and might even be fun in the process.  Let me know how it works out.

– Ben

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. To ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.

Ask Ben: Moving A Bedroom – Downstairs vs. Upstairs

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We have a split-level home and most of our family time occurs upstairs in the kitchen and dining room. Our bedroom and bathroom are also upstairs, all on one level. Since my husband was diagnosed with ALS and he is having difficulty walking, I am worried about his going up and down the stairs. We have a finished basement, but would need to re-do the bathroom. What decisions do other families make related to these choices?

— Gina, Nassau County

There are a range of factors to take into account when making an ‘upstairs / downstairs’ decision. Though the focus should be that the person with ALS is comfortable, the impact on caregivers also needs to be part of the discussion. Getting in and out of a home on one level is certainly easiest, with no stairs to overcome. But there is a ‘loss of access’ to the rest of the house ( i.e. the old bedroom, dining room, kitchen). There is a family impact, as conversations about the Olympics, Politics, or homework, etc. which might naturally occur in another location, now shifts downstairs. These ‘social changes’ are real and should be discussed in advance with all involved.

Some families seek continuity in their lives, and work to keep things as similar as possible. The impact of staying on the upper level of the home requires addressing the outdoor and indoor stairs. Who would be pushing the wheelchair up and down a ramp? Who is assisting with transferring from wheelchair to stairglide? Who is assisting in the shower or bath? Though family activities can occur in similar locations to before the modifications, there is greater dependence on caregivers. They are usually ready and willing, but are they physically able now and in the future?

An outdoor ramp to the front door, and an indoor stair glide to the upper level would maintain access upstairs. To avoid the issue of stairs, another option is to create a roll-in shower and bedroom in a finished basement. This enables someone with ALS to access to physical needs all on one level of thehome, bathroom and bedroom. With no stairs, a person with ALS would have easy access into theground level, perhaps through the garage.

When considering these options, get as much information as possible. Finances are a significant part of the decision. Get cost estimates for the construction and plumbing for a downstairs roll-in shower, and the stair-glide and outside ramp for staying upstairs. How far out into the yard might the ramp need to go? Staying upstairs might require some alterations to the upstairs bathroom. Is there room for a roll-in shower upstairs? Talk about the impacts of each choice. Whatever decision you make, you want everyone to be on-board.

– Ben

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. To ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in this forum.

Want to learn how you can help fight ALS? Click here.

Ask Ben: Making an iPad Easier to Use

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I have ALS and recently it’s been easier for me to sit in a comfortable chair with my iPad, rather than sit at my computer. However lately, I’m finding it harder to even use the iPad. I do use the special stylus a bit, but is there anything I should consider to make the iPad easier to use?

— Todd, Poughkeepsie, NY

I’m happy to say that as of September, yes there is. For someone who struggles with moving their finger around the screen, “switch scanning” has recently become available on the iPad (2 and up) and iPhone (4 and up) with the iOS7 operating system. A switch is an external button you ‘tap’ (acquired separately). Switch scanning allows you to activate various locations around the screen, from navigating apps to composing emails, with a single tapping motion.

For the more technology-oriented who are reading this, and if you have a family member who might need some help with implementing new technology, my suggestion is to learn it first yourself. There are many adjustments to get it just right.

With the right adjustments in the settings menu (primarily in ‘Accessibility’ and the ‘Switch Scanning’), you can continue to use the iPhone or iPad, with diminished hand control. Instead of moving your finger to, and touching, any point on the screen, the device does that for you. A highlighted block moves around the ‘touchable areas’ of the screen. When the area you want to select is highlighted, you press a switch. This tells the device which location to activate with one motion. That motion can be tapping the screen (in one place) with a finger, or tapping a switch connected through a wireless Bluetooth connection.

A point scan method is also available. Point scanning moves a horizontal line and vertical line across the screen. With a switch, or tap on the screen, you can ‘select’ where the lines intersect, and that specific point is activated. It could be a letter while you are typing, or it could be a news items and you want to link to the story. Everything is available. It is faster to press the buttons directly. But if that is difficult, switch scanning is a good option.

Apple has a description of switch and point scanning on their website (search their
website for iOS using switch scanning) and there are also numerous YouTube videos to help get you get started. As with anything new in technology, there is a learning curve. Give yourself some time to learn the options and settings. NOTE: If you get stuck, 3 clicks on the home button turns off the switch scanning.

While the new functionality of iOS7 will allow you to continue to use your iPad, it is a learning process that requires practice and focus in order to improve. The result will be that you have the full access to the iPad, including apps to communication more effectively with loved ones and caregivers.

Have a wonderful holiday season, and a Happy New Year.

– Ben

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. To ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.

To make a donation to ALS assistive technology or for more information about The ALS Association, please click here.

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Ask Ben: Getting a Wheelchair Accessible Van

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My husband has ALS and is no longer able to transfer into a car comfortably. Now our family can no longer take short trips together. I was wondering about the possibility of getting a wheelchair accessible van. Can you tell me how to best go about that?

– Karen, Mahwah, NJ

The purchase of a new or even used adapted vehicle can be costly, so there are a number of things to carefully evaluate when considering obtaining a wheelchair accessible vehicle.

One option is the outright purchase of an adapted vehicle. You can find adapted vehicles listed online or in the newspaper, or at some dealerships. But you need to be knowledgeable about vehicles. An adapted vehicle has the standard issues of car ownership…brakes, mileage, engine, tires, and also the added issue of a working wheelchair ramp. The ramp itself can be $3,000-$6,000 to repair. The cost is higher, if the ramp needs to be replaced. You can find used adapted vehicles starting at $5,000. (Buyer beware!) At a dealership, they could potentially offer a few months guarantee, which could afford you some recourse if you run into problems right away. New adapted vehicles can run up to $50-$60,000. This option is unfortunately cost prohibitive for many families, however, if you are able, you will then have constant access to a vehicle to come and go as needed.

Another option you might want to consider is a rental. Renting an accessible vehicle can be done just to get away for a day, or combine a trip to a restaurant or visit with a friend following a clinic visit. I encourage families to take advantage of this option at least once, if only to determine if it is something you would be comfortable doing again in the future.

In New York and New Jersey, there are a few companies that rent accessible vans, and the cost is not much higher than renting a car. Because there are only a few of these companies, you may have to drive to pick up the vehicle, and then drive it home to transfer the person with ALS into it. It may differ from having your own car, and there are some per trip costs, but being able to ‘get out’ is important. Each family must decide if it is worth it.

Since accessible vehicles are not as readily available as standard cars, advance planning is recommended. Even if you don’t need a vehicle at this time, contact the companies in your area, to know where they are located, and what the rental process is in advance. It will help be prepared if a need or opportunity comes up unexpectedly. For a list of companies that rent accessible vehicles in the New York/New Jersey area, please contact me.

Lastly, while our loan program does have a few wheelchair accessible vehicles, there is great demand and short supply, and therefore the waiting list to receive such a van can be quite lengthy, and could be as long as a year.

Regardless of which option is right for you and your family, having access to an adapted vehicle provides an extended range of involvement and independence.

– Ben

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. To ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.

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Ask Ben: Trying to Stay Active With ALS

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My husband has ALS. He used to love to ride his bike. But he can no longer do many things he used to do. Is there something he can be involved with, that allows him to be a little active, even though it is not at the same level it was before. – Joan, Nassau County, NY

Joan, you capture an experience of many people. As ALS progress, muscles are not doing what they used to, and it’s a difficult adjustment to ‘give up’ activities one is so used to doing. From hard exercise to light walking in the neighborhood, change becomes a constant. The loss of muscle function is difficult, but there are alternative ways to stay active.

One outdoor activity as an alternative to bicycling is hand-cycling. These are basically low to the ground tricycles for adults that operate by hand. When on the hand-cycle, your legs are stretched out in front, while your hands are doing the pedaling. Upper body capability is certainly needed, but there is no ‘balancing’ required like on a bicycle, as the two wheels in back and one in the front keep you firmly on the ground.

If you’re in New York City, the International Achilles Club has several hand-cycles available to try it out. They can be found in Central Park on Saturday mornings from 8:00am to 11:00am at 90th Street and 5th Avenue and it’s free. There are other organizations too, devoted to providing hand-cycle opportunities for little or no cost. If you are looking to get away for a weekend this fall, Simsbury, Connecticut (2hours from the Throgs Neck Bridge) is a small bicycle friendly town with a rail trail. Several locations loan standard bikes, and CT Adaptive Cycling is dedicated to get people with disabilities on a hand-cycle.

It is important to speak with your medical professionals to determine how much exercise is right for you.

– Ben
Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. To ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.