Technology can improve the quality of life and keep you living until a cure catches up
TECHNOLOGY—COMMUNICATION WITH EYE GAZE
No one likes to think about losing their ability to speak or communicate their needs, however it can become a reality. As your muscles get weaker, it becomes harder for your loved ones to understand you. It also becomes exhausting for you to repeat yourself.
You will want to get a referral to a speech pathologist that can guide you through the options available. You will want a device that is equipped with eye gaze technology. As the disease progresses, if you lose your ability to use your hands, eye gaze technology gives you the ability to communicate your needs with only your eyes.
You will also be able to surf the web, turn on lights or fans in your home, change the TV channel. These devices will give you some independence and keep you connected to the outside world, including friends and family.
Facebook support groups for dealing with ALS are amazing and will keep your spirits up.
There is technology that will allow you to preserve your voice so that when a computer speaks the words you type it can be your voice instead of a computer generated voice. This must be done before voice function diminishes.
It is important to put your caregiving team in place as soon as possible. You WILL need help! One or two people cannot do all the caregiving. This will become an around the clock necessity.
A spouse should not be the sole caregiver, a spouse needs the ability to be a spouse too and not just a caregiver. With Medicaid you can look into paying and hiring caregivers. No one likes the idea of a stranger performing care, however this is how the family unit gets to stay a family and not just caregivers.
EQUIPMENT & HOME RENOVATION
MAKING A HOME WHEELCHAIR ASSESSABLE
Things to consider:
- Bathroom / Shower
- Bedroom on first floor
- Look for grants to help pay for home renovations
A PROPER WHEELCHAIR
Please understand that when it comes time for a wheelchair, insurance will want to pay for the bare minimum.
Make sure you ask for a wheelchair that will expand as the disease progresses.
TRAID CENTER LOAN CLOSET
ALS of Utica is proud to work with the Traid Center Loan Closet at UCP. The Traid Center is a wonderful resource for our local area. They provide, store, and maintain equipment for those in need.
If you have equipment needs, please call 315-292-1968. Located at 675 Catherine St. Utica, NY 13501