lsavage2000
Member
- Joined
- May 12, 2010
- Messages
- 12
- Reason
- PALS
- Diagnosis
- 07/2007
- Country
- CA
- State
- Ontario
- City
- Holland Landing
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
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
