3 posts tagged “assistive technology”

Staying mobile with assistive walking devices: Member Cathy weighs in

Posted 3 months ago by

Do you have difficulty walking or getting around? Have you considered using a wheelchair, walker or cane? Making the decision to use a walking or mobility aid can be difficult. You’re not alone. Here, PatientsLikeMe member Cathy living with multiple sclerosis shares about how she overcame the fear of losing her independence and how using a cane is helping her “live the kind of life we all deserve.”

When you’re first diagnosed with multiple sclerosis, it’s typical to have questions and concerns that are overwhelming and cause great anxiety. In the age of “fake news,” this anxiety increases when we’re bombarded with television programs that characterize disability as a downward slide. It doesn’t have to be this way. A positive attitude and a bit of determination can help us live the kind of life we all deserve.

One of the greatest fears for many after being diagnosed is if MS will progress to the point of losing our independence. After enjoying a life of self-reliance, the thought of depending on assistive walking devices such as canes, walkers, scooters or wheelchairs is frightening.

I was twenty-eight years old when I was diagnosed. My legs and hands were weak and numb, and my balance was so bad that an ignorant passerby accused me of being drunk. I refused to consider using a cane. I remember taking a walk with my father, his legs twice as long as mine, and trying to keep up with his pace. It was a losing battle. When we crossed the street he threw his long arm out in front of me like a crossing guard, silently knowing how slowly I walked and how long it’d take to cross the street. I’m sure his heart was heavy, and being with him at that moment, my heart was heavy, too.

On accepting a new normal

I was experiencing debilitating MS fatigue, so refusing to use a cane only increased the exhaustion. Later, I learned that favoring a strong leg over a weaker one is not only tiring but also increases the chance of falling and being injured. I had to end my stubbornness for safety’s sake.

I learned that lesson the day I walked through a crowded restaurant and my legs buckled under me. I fell hard on the wooden floor and my friends helped me to my feet. Patrons all around us glared and I was completely mortified. It was at that moment I admitted to needing help.

My friend Abi Budd has a similar story. It took her awhile to come to terms with using a mobility scooter. She struggled with walking and became terrified of her inability to go from one place to another without falling. Her denial was affecting her lifestyle, but her determination and positive attitude led to acceptance; a chair would help her regain the freedom she once knew. She has an infectious attitude.

The same is true for another friend, Debbie Petrina. She doesn’t allow her MS to stop her but embraces the use of assistive walking devices to give her the freedom she desires. “Through the years, assistive devices have allowed me to be less fatigued, elevating my moods and enabling me to do more. I didn’t overheat as fast since I struggled less in trying to walk.”

Learning to accept your new circumstances and relying on assistive devices is a surefire way to live the best life possible. I’m not saying it’s always easy, I’m just saying it’s worth it.

Cathy’s picks: Helpful resources

Do you use a cane or other type of mobility aid? How and when did you make the decision to start using one? Join PatientsLikeMe and share your experience with the community.

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Communicating with ALS: From devices to voice banking

Posted 9 months ago by

 

Difficulty with speech and communication is a frustrating reality for many living with ALS. From apps to devices and voice banking, communication is a popular topic (as in over 35k conversations) on PatientsLikeMe, so we took a closer look into some of the options out there for pALS.

Tablets: Windows vs. iPad vs. Android

Trouble with typing or hand weakness? Amy, an augmentative communication specialist at Forbes Norris ALS Research and Treatment Center, recommends Windows (8 or 10) and Android tablets:

  • Windows devices have USB ports which makes them the most compatible with accessories like a mouse, joystick, eye tracking or head tracking device.
  • Androids may be compatible with these accessories as well, but often require a USB adapter. Adaptors are specific to the Android port and are inexpensive and easy to find online if you search for “USB adapter” and the make and model of your Android device.
  • iPads don’t offer these accessory options that use a pointer because their screens don’t display a mouse cursor. They do offer switch scanning access methods (a system by which a series of choices are highlighted and can be selected by hitting/activating a switch) for people who can’t use their hands on a screen or external keyboard. Some pALS find scanning too slow compared to cursor movers like a mouse or eye tracking.

Text-to-speech apps:

If you have difficulty speaking, there are many app options that convert text to speech:

Want to know more about communication devices? Check out Amy’s tips for paying for your tablethands-free options and message and voice banking.

Voice banking:

Many people with ALS who experience problems with speech, voice, and communication choose to preserve their voice for future use.

How does voice banking work?

Voice banking is a process that allows a person to record a set list of phrases with their own voice, while they still have the ability to do so. The recording is then converted to create a personal synthetic voice.

When the person is no longer able to use their own voice, they can use the synthetic voice in speech-generating communication devices to make an infinite number of words and sentences. The “new” voice isn’t a perfect replica of the person’s natural speech, but it will bear some resemblance.

Want to bank your voice?

Check out these options:

ModelTalker: A software designed for people who are losing or who have already lost their ability to speak. It allows people who use a Speech Generating Device (SGD) to communicate with a unique personal synthetic voice that sounds similar to their own voice.

Message Banking: An app that enables you to record and save messages in your own voice that can later be imported into a Speech Generating Device (SGD) or several tablet communication apps.

VocaliD: A platform that creates unique vocal identities for any device that turns text into speech. From just a three-second sample of sound that you make, the app can match you with a speaker from its voice bank and blend your vocal sounds with their recordings. Check out this moving video to see how voice banking changed the life of one man living with ALS and gave his family a piece of something they thought they had lost forever.

How much does it cost? Recording and banking your voice is free with programs like VocaliDMessage Banking or ModelTalker. With VocaliD, you only pay to download and use your synthesized voice. Pricing starts at $1,199.

When should you bank your voice? VocaliD recommends that you bank your voice sooner rather than later. With two options from VocaliD, you can bank your voice no matter where you are in your speech loss:

  • BeSpoke Voice: For people with speech impairment who are able to record three seconds of sound.
  • Vocal Legacy: For people who want to preserve their voice for the future and are able to record several hours of speech.

Have you banked your voice? Do you use a synthesized voice? Join PatientsLikeMe today to share your experience.

 

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