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Old 05-14-2010, 02:18 PM #1
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Default Help to improve quality of life

Hello Everyone,

I have struggled with ALS (Lou Gehrig’s disease) for three years now. At this point I can still move my neck and head but the rest of my body is effectively paralyzed. Over the past three years I’ve found that most of the assistive devices I needed either required modification, were overly expensive or had not been developed yet. This meant get creative or go without.
My brother and my son have helped me create many systems and assistive devices that have made everyday living easier and improved my quality of life. With the help of these devices, while confined to a wheelchair or an adjustable bed and without the use of my hands and arms, I am still able to perform several tasks independently.
With voice commands, line-of-sight or through the head array on my electric wheelchair, I am able to control the computer pointer without a mouse. The software systems we have developed allow me to control many electronic devices from my bed or wheelchair with microphones and other input devices.

Because of these things I am able to:

• Turn devices on and off, such as lights or a heater, which allows me to control the temperature in my bedroom.
• Access intercoms placed throughout the house, which means I have not had to use catheters because I can call or speak to someone to help me during the night.
• See who is at my door and speak to them using audio/video cameras.
• Lock and unlock my front door.
• Access HelpCall, the emergency helpline. I couldn’t do this before because I couldn’t wear the wristband or press the button myself.
• Turn the television on and off, change channels, control volume and record programs.
• Select and listen to audio books or music on my computer or through internet radio.
• Use word processors with speech recognition and mouse pointer control to compose letters and other documents.
• Access the internet, allowing me to send and receive e-mails and browse the internet.
• Family and caregivers can monitor and speak to me from anywhere with internet access, using audio/video cameras.
• Control my adjustable bed using voice commands to raise or lower my head or feet, or turn on my two available vibrator settings.

Besides electronic devices, we have also developed and built several other devices that have improved my quality of life.

Here are some examples:

• When I could still bend my knees my son developed a pulley system we used with a ceiling lift that allowed me to turn on my side while in bed.
• My feet began to drop and I was getting cramps through the night, so my son built an adjustable angled footboard that supports my feet without pain.
• To stop the pain of my heels slipping off the back of the foot rest when reclining in my electric wheelchair, my son built two plastic guards to prevent this and allow them to slide comfortably in reclined positions.

There are many possible ways to compensate for a disability. I find that the things we have developed have provided increased independence, peace of mind, security, and have returned a sense of control. As a result, it has relieved stress on my family, friends and caregivers as well. We have many great ideas and solutions we would love to share with others. However, we have used up our resources ensuring that what we have developed for my situation is functional and reliable.
We do not want what we have accomplished to die with me, as there is much potential for what we have created to be used to help many others with disabilities. This includes anyone with any neuromuscular diseases such as Multiple Sclerosis, Muscular Dystrophy, Parkinson’s, Huntington’s, Spina Bifida, or ALS (Lou Gehrig’s disease). These systems and devices could also help people who are elderly, have lost limbs, are paraplegic, have been crippled or paralyzed in an accident, or have been immobilized in any way.
Through hard work, determination and creativity we have done our best to counter the progressive difficulties that affect my life and those around me every day with remarkable success. We understand and appreciate the struggle that life can become when affected by a disability. We would like to see these systems and devices available to all who are disabled.
We lack the resources to continue creating and developing new assistive devices and systems. I’d like your input to help me find a way to let everyone know not only that these systems are available but that we have to find some way to make them available to those who really need them. Please contact me if you can think of anyone that I can talk to that can help.
My quality of life has improved and I think that the quality of life of others can be improved as well.
Regards, Larry
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Old 05-14-2010, 03:12 PM #2
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Default Re: Help to improve quality of life

Larry,

While I don't know immediately who can help, I think posting here is an excellent first step.

Your list of systems and assitive devices is impressive - kudos to you and your family for being so innovative and embracing technology. Truly inspirational. Thank you for sharing.

Welcome to the Forum!

Dana
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Old 05-14-2010, 03:26 PM #3
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Default Re: Help to improve quality of life

hi i agree with larry,what a way of keep fighting this awlful disease thumbs up to you and your famil god bless you all
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Old 05-14-2010, 04:53 PM #4
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Default Re: Help to improve quality of life

Larry, what a wonderful, innovative family you have!

The only thing I can think of right now: Contact the MDA and present your ideas/inventions and see if they would feature them in their newsletter.

Good luck to you and thank you for sharing! Hope to see more contributions from you on the forum!
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Old 05-15-2010, 03:20 AM #5
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Default Re: Help to improve quality of life

What about Stu? Surely this would be one of the best ways to help us others who do not have these skills. I think it is a wonderful wonderful offer and I soooo hope it gets off the ground. What about newspapers or TV channels. The local ones would be interested and the national might then pick it up and run
Well done!
Good luck
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Old 05-17-2010, 10:57 AM #6
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Default Re: Help to improve quality of life

Hello irismarie,

Thanks for your kind words and suggestions. What is this Stu that you are refering to? We will continue to post as long as others like you are interesting in seeing this technology get off the ground as well.

Regards,

Larry
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Old 05-26-2010, 01:32 PM #7
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Default Re: Help to improve quality of life

Hello Dana,

Very sorry to hear about your Dad. ALS shows no mercy and deserves none. Thank you for your kind words. We are hoping for more help because we think what we developed can significantly improve the quality of life for anyone with this type of condition.
Please tell everyone about this assistive technology because we want everyone to have access and be aware that there are other solutions.
Regards,
Larry
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Old 05-26-2010, 01:41 PM #8
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Default Re: Help to improve quality of life

Hello Jeff,

I'm new to this, sorry it took so long to respond. Thanks for your input. We will keep fighting, everyone needs to have access to this technology.
Regards,
Larry
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Old 05-26-2010, 01:48 PM #9
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Default Re: Help to improve quality of life

Hello Brooksea,
We have just finished posting to a variety of forums on MDA. Thank you for your suggestion, we will approach MDA about their newsletter.
Give our best to your husband. How could what we have developed help him? This technology needs to be made available to everyone.
Regards,
Larry
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Old 05-26-2010, 05:33 PM #10
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Default Re: Help to improve quality of life

Larry, thank you for offering to share what you have created in terms of these technologies. I wonder if you would be able to say more about the specifics of what you are using? Do you base the control off a portable computer, or are you using commercial devices like Dynavox, or the controls built into some of the fancier power wheelchairs? For controlling things around the house, are you using IR, power line signals, Wifi or something else? I would love to hear more about what equipment and technologies you have found useful and effective.
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Old 05-27-2010, 12:31 PM #11
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Default Re: Help to improve quality of life

Hello

We are using standard desktop computers able to run the Windows 7 Operating systems. To control the devices we've written the software and utilize a combination of technologies. Example: IR, RF, X10, WiFi, NetGear, custom built devices and modifing existing off the shelf devices, etc.
I have one of those fancy overpriced wheel chairs and we modified an RF puck with 6 IR channels just to see if we could do it.
We've created or modified lower cost off the shelf assistive devices and using the technologies described above have made them all work with our software. Our goal was and is to develop assistive devices that are adaptable, accessible and most of all affordable.
I hope this helps you a little. Be well.
Regards, Larry
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Old 06-13-2010, 12:54 PM #12
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Default Re: Help to improve quality of life

first of all, can I borrow your son? Would he like a holiday in SW France whuile he builds me some aids?

Stu is ALS/MND Support Group Forums - View Profile: SMillheiser

Stu millheiser, the founder of ALS Guardian angels. Take a look at their site and offer your services. It is a crying shame if people cannot get the benefit of these aids. I live alone and life is SO darned hard at times, tho I do get state aid.

Stu is run off his feet so you may have to write twice to get his attention but DO PLEASE try;

mUCH LOVE AND good luck with this. YOUR SON SHOULD BECOME RICH AND FAMOUS:
trouble with caps
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Old 06-27-2010, 09:32 PM #13
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Default Re: Help to improve quality of life

Hi There
My boyfriend is a technology nut and is having a really hard time lately with feelings of claustraphobia and helplessness. I think that if he could control the TV, computer and bed, he might feel a bit less helpless.
Could you please let me know how to get in touch to ask some questions?
We would definitely be interested in purchasing these programs.
Thanks,
Lindsay
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Old 06-27-2010, 10:17 PM #14
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Default Re: Help to improve quality of life

Have you been in touch with the ALS Society? They are a wonderful source of information and supplies.
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Old 06-28-2010, 02:37 PM #15
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Default Re: Help to improve quality of life

Hello Lindsay,
This is in response to your post in the forum, Tips, Tricks and Gadgets.

First, I want you to know that I understand what your boyfriend is going through. Give him a hug and tell him that there is light at the end of the tunnel. The fact that he is a technical nut will help. The fact that he has you will also help.

You have questions, please feel free to ask whatever you'd like. We need information before we can suggest solutions that best suit his needs. Let's just start with contact information.

My name is Larry and I have ALS. You may also get responses from my son, Mike or from Tamarra who ensures we respond to or keep in contact with everyone we need to.

You ask the questions that you need to make you and your boyfriend comfortable. Then we will ask questions to get the information we need, without getting too specific.

We will help you and your boyfriend and we will keep it affordable and totally transparent to you. Please start asking questions, Lindsay. When you feel more comfortable, you can talk to us on the phone if you'd like.

Looking forward to hearing from you and helping your boyfriend achieve more independance and improve his quality of life.
Later, Larry
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