The effects of Neuro and Muscular Disabilities with Dr. Neil Matthiessen
July 15, 2019
Originally tweeted. Provided here for posterity!
Time for the Nebraska Digitial Accessibility Meetup! Tonight we're hearing from Neil Matthiessen, on "The Affects of Neuro and Muscular Disabilities." Neil is a doctor of Occupational Therapy.
What does an occupational therapist do? They take a holistic approach to help people do their "activities of daily living". "The physical therapist gets you to walk, the occupational therapist gets you to the toilet and to use it."
What's a neurodegenerative disease? Diseases, often hereditary, that are progressive and usually chronic conditions resulting from damage to the nervous system. Includes Multiple sclerosis, Parkinson's, a kind of sclerosis, Hunting's disease, and dementia.
These diseases come with a variety of traits in how people move: impairment of voluntary movement resulting in freezing, slowed movements, decreased coordination, muscle stiffness that impairs movement, muscle twitches, and numbness/tingling. These all have big latin-ish names.
Numbness and tingling might make it hard to type - a person can't feel the keys they're pressing down, which might result in pressing a key too many times or not enough.
Multiple sclerosis affects 2.3 million people around the world. It is typically diagnoses between 20-40 years old, with women being diagnosed 3x more than men.
MS has remission states and active states that people can fluctuate between. Some might have one flare-up in their life and that's it; others might have continuous flare-ups. Or something in between! Symptoms can fluctuate, too.
At the beginning, someone with MS might have visual disturbances, dizziness, and weakness. Then they might have impaired balance/coordination, paralysis, muscle weakness and fatigue. 80% will experience a loss of visual acuity (ability to see clearly).
Remember here that blindness is a spectrum - one might be able to see color fields, or light sources, or see 'regularly' but only up very close to their face.
MS can affect communication - slurred speech, or slow enunciation with frequent hesitation ("scanning speech"). Cognitive symptoms include short-term memory loss, attention deficits, decreased processing speed, impaired executive function, and more.
Parkinson's Disease (PD) is progressive and usually hits later in adulthood (55-60). It results in a decrease in speed & accuracy of motor skills, cognition, and affect and expression. >10 million people globally experience it.
Young developers tend to assume that older people (40+!) don't use technology. But older people do use technology, and as current middle-aged folks age, they're not going to give up technology that they're used to.
Parkinson's symptoms primarily include tremors in the hand, muscle rigidity or stiffness, and extreme slowness in movements - especially when standing up or starting to walk.
There are a variety of additional, secondary symptoms, and progression is not linear. "Functioning may fluctuate or even show occasional improvements."
Parkinson's can be accompanied by communication difficulties like reduced volume of speech of muffled speech - making tools like speech recognition harder to use at the same time tremors make it hard to type or write.
Next, we're learning about a variety of diseases under the dementia umbrella. It's not just Alzheimer's!
Some dementia is normal in everyone as they age (where are my keys again?), but these 4 diseases have stronger and more varied symptoms. They include Alzheimer's, Vascular, Frontotemporal, and Dementia with Lewy bodies.
Neurological impairments are disabilities that are acquired by something like an accident. The most common is Traumatic Brain Injury, most common in men and all people ages 16-30. Causes include falls, car accidents, striking or being struck by an object, or assault.
Smartphones can be challenging particularly for people with depth perception issues and issues sequencing tasks - how to know when you've pressed a button long enough to make a call, or to find the screen that the important buttons are on?
The presenter has tried to encourage a patient to get a simpler phone like a Firefly phone (that just has 3 buttons, to call 3 different numbers) to communicate with caregivers but there was a big barrier: the patient didn't want to carry something that looked 'old'.
The presenter has experience working with medical providers on their websites - doctors work with people experiencing these disabilities, but want websites that will make their own patients and prospective patients have a very hard time finding the info they need. #a11y
Many people with disabilities face financial hardships and poverty. They may have to choose "should I get a computer, or a phone?"
Some assistive technologies that people might use: screenreaders, text magnifiers, dictation software, text readers (reads just the text, not menu items or other elements), and alternative input devices.
Some alternative input devices include: head pointers - mounted directly on a user's head and can push keys on a keyboard. Used by individuals with no use of their hands. Motion tracking/eye tracking to move a mouse, sip & puff (breath) switches and single switch entry devices.
oneswitch.org.uk - makes video games for people who use a single switch entry device. No matter what your capability levels are, everyone likes to play.
We watch this video of a former BMX rider, Stephen Murray. He uses eye-tracking to operate his computer. After his accident he lost a lot of privacy, and being able to get online brought it back. "My eye tracking is an anti-depressant", he says. #a11y