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njrealestategirl

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Loved one DX
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NJ
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Fairfield
My mom was diagnosed with ALS in August. I think its progressing quickly on her. She has no use of her hands or arms. She lives with my dad and he does everything for her. One of our concerns is that if something should happen to him (he has a heart condition) or should he fall, pass out, god forbid a fire in the house, etc., my mom has no way to call for help.

Even in the winter they came home one night and it was snowing and my dad got out of the car first to clean off the walkway for her and he fell. She stayed in the car because she cannot open the door or car window, etc. to get help. He was ok but that is just an example of if something happens to him, she has no way of calling for help. She cannot use the phone, can barely walk on her own, is there anything that she can use without the use of her hands?

Thank you.
 
njrealestategirl,

Welcome to the forum, I am sorry you have to be here but you have come to a great place for info. I have really learned a bunch here.

I am wondering if your mom has been to an ALS clinic to work with staff such as physical, occupational and speech language pathologists? This is the type of situation that they can help problem solve. I do know that the spinal cord injury patients that we work with at our hospital have options like a control touch pad that can be put between the knees or on bed rails that do not require the fine motor control that other controllers use. There is also a system that uses a tongue touch key pad that is made from impressions of the teeth and goes in the mouth like a retainer. Anyway there are some options out there and it sounds like they are much needed in your Mom's situation. Consider an evaluation by a therapy team or an assistive technology specialist. Your local ALS society should be able to hook you up.

Hope that helps with ideas.
Dana
 
njrealestategirl,

Welcome to the forum, I am sorry you have to be here but you have come to a great place for info. I have really learned a bunch here.

I am wondering if your mom has been to an ALS clinic to work with staff such as physical, occupational and speech language pathologists? This is the type of situation that they can help problem solve. I do know that the spinal cord injury patients that we work with at our hospital have options like a control touch pad that can be put between the knees or on bed rails that do not require the fine motor control that other controllers use. There is also a system that uses a tongue touch key pad that is made from impressions of the teeth and goes in the mouth like a retainer. Anyway there are some options out there and it sounds like they are much needed in your Mom's situation. Consider an evaluation by a therapy team or an assistive technology specialist. Your local ALS society should be able to hook you up.

Hope that helps with ideas.
Dana

Thank you Dana. She has been to physical and occupational therapy for a few months but then they stopped it. I believe because it was not helping. After months of therapy, still no use in her arms/hands. She can't even lift her arm up. Its like she is so helpless. She never is left alone but if something ever happened to whomever she was with that was caring for her, she'd have no way to get help. I'm not sure if everything is being done to help her. I will look into the local ALS. Thank you.
 
I also have lost the use of my hands/arms.There is a very simple,immediate and inexpensive solution. All you need is a wireless doorbell. They cost around $15.00 (walmart) and are made to either be totally battery powered or the receiver can be plugged into any wall socket. You can use velcro or double stick tape to mount the buttons wherever you need them. I have several. I have 2 mounted one on a walker. One on the front that I can reach from my lift chair with my toe and one on the base that I can reach in case of a fall. One at my PC desk, on the foot platform of my wheelchair and one on my porch. I also have one in my van. If you buy the same brand the buttons all operate on the same frequency.

Get an emergency call system. I use Rescue alert. Costs about $220.00 a year. The buttons can be mounted anywhere including an ankle. They work up to 500 feet from the receiver. If you dont answer on call back they will send help and call your emergency contacts.
 
help cry... arms don't work

Hi... glad you are helping mom and concerned for her... i have arms onset als diagnosed 9/07... have no lift.. can't use fingers ... no pinch ability... and bad curl... still using keyboard but i hold a pencil with large fome curler at end in my palm and hit keys with eraser tip... works..
but for emergency alert, i carry a cell phone on a cord around my neck so it reaches to my lap... there i can speed dial in emergency and get help... like your mom i cannot open car door.. i am in wheelchair... hope it helps Gpa8
 
My husbamd thinks i am crazy but i sleep with my cell phone undr my pillow i feel most helpless in bed
pat
 
I also have lost the use of my hands/arms.There is a very simple,immediate and inexpensive solution. All you need is a wireless doorbell. They cost around $15.00 (walmart) and are made to either be totally battery powered or the receiver can be plugged into any wall socket. You can use velcro or double stick tape to mount the buttons wherever you need them. I have several. I have 2 mounted one on a walker. One on the front that I can reach from my lift chair with my toe and one on the base that I can reach in case of a fall. One at my PC desk, on the foot platform of my wheelchair and one on my porch. I also have one in my van. If you buy the same brand the buttons all operate on the same frequency.

Get an emergency call system. I use Rescue alert. Costs about $220.00 a year. The buttons can be mounted anywhere including an ankle. They work up to 500 feet from the receiver. If you dont answer on call back they will send help and call your emergency contacts.


This is proof why this forum is a life-line. Thanks for the helpful tip.. So thoughtful
 
need to help friend who loves to read

Hi everyone,
I have a dear friend who has ALS. She is in a wheel chair and has almost no arm hand movement. She loves to read and is having trouble turning pages, etc.

Is there a "handy dandy" help of some kind to help hold the book and turn the pages? I pray so and where can it be obtained?

Please let me know ASAP as reading is the MAIN comfort in her daily life.

Blessings,

Phyllis
 
Have you checked into a Kindle? I don't have one or have I seen one but other forums are talking about them.
* Revolutionary electronic-paper display provides a sharp, high-resolution screen that looks and reads like real paper.
* Simple to use: no computer, no cables, no syncing.
* Wireless connectivity enables you to shop the Kindle Store directly from your Kindle—whether you’re in the back of a taxi, at the airport, or in bed.
* Buy a book and it is auto-delivered wirelessly in less than one minute.
* More than 285,000 books available, including more than 109 of 112 current New York Times® Best Sellers.
* New York Times® Best Sellers and New Releases $9.99, unless marked otherwise.
* Free book samples. Download and read first chapters for free before you decide to buy.
* Top U.S. newspapers including The New York Times, Wall Street Journal, and Washington Post; top magazines including TIME, Atlantic Monthly, and Forbes—all auto-delivered wirelessly.
* Top international newspapers from France, Germany, and Ireland; Le Monde, Frankfurter Allgemeine, and The Irish Times—all auto-delivered wirelessly.
* More than 4,400 top blogs from the worlds of business, technology, sports, entertainment, and politics, including BoingBoing, Slashdot, TechCrunch, ESPN's Bill Simmons, The Onion, Michelle Malkin, and The Huffington Post—all updated wirelessly throughout the day.
* Lighter and thinner than a typical paperback; weighs only 10.3 ounces.
* Holds over 200 titles.
* Long battery life. Leave wireless on and recharge approximately every other day. Turn wireless off and read for a week or more before recharging. Fully recharges in 2 hours.
* Unlike WiFi, Kindle utilizes the same high-speed data network (EVDO) as advanced cell phones—so you never have to locate a hotspot.
* No monthly wireless bills, service plans, or commitments—we take care of the wireless delivery so you can simply click, buy, and read.
* Includes free wireless access to the planet's most exhaustive and up-to-date encyclopedia—Wikipedia.org.
* New: Kindle Books can be read on your iPhone or iPod touch. Learn More
* Email your Word documents and pictures (.JPG, .GIF, .BMP, .PNG) to Kindle for easy on-the-go viewing.
* Included in the box: Kindle wireless reader, Book cover, Power adapter, USB 2.0 cable
 
Dear NJREALESTATEGIRL:

I am so sorry for your Mom's disease. My husband also has same problem but can walk. We purchased a lanyard with an alarm emergency pendant. If he falls, etc. hoping he could roll on it, and it then calls the police and they dispatch immediately.

Just wanted to tell you we are from NJ also and my son is real estate agent.

My husband is 59 years young.

So sad that you adult children have to experience this sadness with your parent. Hang in there young lady and know that your Mom and Dad are really blessed to have you to call their daughter! I am sure they know that. :)

Patty
 
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