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How Do You Communicate?
Cause I use a special communication device called a Dynavox & when I don't have my Dynavox I communicate through eye signals or little vocal murmurs. My Dynavox is almost like an IPAD & I access it by tapping a little switch & it scans through buttons until I select the button that I want.Here's a photo of me with my Dynavox 👇👇👇
I Asked This A Month Ago. My Grands Have Been Diagnosed With SMA. How Would It Manifest Itself In Their 73 Yr Old Grandmother
Genetics test
Is There A Resource On Here To Share Experiences We Have With Different Products And Companies Who Sell Those Items?
Specifically a company who has, what I believe to be, terrible customer service, misleading company information and demanding sales of their accessories and goods exclusively or void their warranty?
For Anyone That Uses A Power Wheelchair That Can Still Stand Up What Chair Do You Use Thats The Easiest To Stand From?
Scooter, the tiller is useful in so many ways
I Have Had 3 Falls In 5 Days. My Legs Collapse Without Warning And I Crash To The Ground. I Am Frightened. I Don’t Know What To Do.
The doctor said to do balance and strength exercises but that wont help with atrophy. Do I visit a neurologist for advice or give up doing things in the house like preparing meals and washing up.
I Need An Assistive Devices/equipments For Control My Neck Movement, Please Suggest Some For Me
I have type three and have noticed neck weakness too so I tried neck pillows and supports bur found this on Amazon https://www.amazon.com/dp/B07XKJVQ3W?psc=1&...
you can shape it any way you want… read more
Mac Users - What Assistive Technology Do You Use To Control Your Desktop?
I recently bought my first desktop computer and I am so excited! I am currently using the magic trackpad, the built-in on screen keyboard, and voice control. Is there anything else I could be using to make things more efficient? I am on my computer pretty much all day, and I'm always looking for ways to be more productive while simultaneously reducing my fatigue.
I have been using Dragon Naturally Speaking for years, and the newest version is much better. I also could not recommend Hot Virtual Keyboard enough. This is an amazing app that lets you customize… read more
How To Get More Energy?
Hi, good morning guys, I am going to change my life, and planning to increase my body weight, but I have no idea on Sma diet, I am not being over 25kg although I am 23 years old already
Can someone who see this post can understand my situation and give a suggestions to me?I am using a Naso-enteric tube for almost 3 years now. Doctor said I will get aspiration pneumonia if still use my mouth to swallow food. I am drinking the milk (brand: Ensure Gold) only with 200ml/4 scoop of powder every 2… read more
Hello, I am a mother of a child that had type 1 sma. When she was 15 months old she was diagnosed and the drs told me she would not make it to 2 yrs old. They were wrong. She passed away at 12 1/2 yrs… read more
I Have Muscles Weakness In Both Legs And Shoulders
Dealing With Government Regulations On Attendant Care
I am still entangled in the bureaucratic quagmire of my attendant care program. Long story short, around the beginning of the Pandemic, I lost a reliable attendant and i have been in a nightmare ever since then. I can't afford all the attendant care i need privately, so had no choice but to sign up for a state waiver program that has all kinds of ridiculous rules and regulations. The state program barely pays minimum wage, they dont cover gas or transportation, and they only cover a minimal… read more
15 years ago I looked at how I would obtain caregivers. I would need to spin down my meager assets to less than 2k. Smart ones move to California where state actually cares. All options in US… read more
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