No Use of Hands - Call for Help?

[njrealestategirl]

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.

[asantiago]

There is a communication device called the Erica that is controlled with eye gaze technology. I'm pretty sure it has a feature for calling for help. I know you can browse the internet with it so there has to be something that can be set up to send an alert to someone. Insurance sometimes covers these devices.
http://www.alibaba.com/product/id104925586-104611979-0/ERICA_Disability_communication_device_Ha nds_free_tablet.html

[DgtofTNfan]

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]

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.

[boblandstar1]

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.

[Gpa8]

Hi... glad you are helping mom and concerned for her... i have arms onset als dx 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

[patricia1]

My husbamd thinks i am crazy but i sleep with my cell phone undr my pillow i feel most helpless in bed
pat

[hopingforcure]

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

[helpingafriend]

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

[georgia]

Have you checked into a Kindle? I don't have one or have I seen one but other forums are talking about them.
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[hopingforthebest]

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