ALS Research paper

[califsand]

Hi everyone,

Despite how intense things are, I am back in school... not really what I want to do right now but maybe it's a good thing for me. Anyways, I'm a writing major and right now I'm taking a class on writing about Technology. It's not really my thing but I suppose that a writer should be well rounded enough to write about anything, right? It's a great program and good that they push me out of my comfort zone sometimes!

I'm posting here because I have to come up with a research topic to write a paper about. I want to write about ALS and need to pick some type of recently, or currently used technology, research it and then write about its effectiveness. My thought that as caregivers, there are many people in here who have experimented with new technology with your PALS, to help them communication, breathe, get around, etc. and I was hoping you may have some suggestions. Below are details:

"The first thing you need to do before researching or writing a proposal or report is decide on a topic. The topic should have to do with some relatively recent technological innovation. Do not pick something so new that there is not enough research to merit reporting. For this reason, do not pick an innovation that is not yet widely in use or still being researched (nanotechnology, for instance).

Make sure that your topic addresses a recent technical innovation that you are interested in and meets the following criteria:

"Recent" means the innovation was developed no more than five years ago.

Your topic must be about an innovation that is currently in use. This means you cannot do a topic that is about a theoretical or experimental innovation like teleportation, establishing a base on Mars, or nanotechnology.

The focus of your research should be the innovation's effectiveness or lack of it, not the moral, political or other dimensions of the innovation."

My Dad has been bedbound for a while and prior to that he refused to try out any of the ALS medications or devices that many of our PALS have used. Can any of you reccommend any technology that you have used that has been a help? I would like the paper to be positive and show that technology really can improve quality of life for some people. If the paper is good enough I can publish it after my class is over and help raise awareness not just about ALS but about things that can help those that suffer from it. Any ideas would be really appreciated!

Thanks ahead of time,

Sandy

 

[tinkerbell]

Hi- Can't wait to see what you end up with. Mt first thought was a new and exciting device called The Audeo (Theaudeo.com) It is a "collar" you wear around the neck which - believe it or not- can "read" your thoughts and speak for you. I am describing this very badly, but basically your vocal chords vibrate when you think about saying a word (I never knew this) This device connects to a computer and allows a person who is unable to speak, to communicate. They also have used it to move a wheelchair just by thinking that you want to move. I am not sure if this would be the best for you to write about because it is so new- it would take a lot of work to get all of the info. I will be attending a research symposium and one of the co-founders will be there, so I could see if there is sufficient info. and get back to you if you're interested. The website does not show as much info as you could get by a google search. Augie Nieto wore this device on the MDA Telethon this year to display how it works. (You can google Augie & Audeo to find a video of it) and there also is a video out there of one of the inventors making his wheelchair move. The first group of people who will get this device are ALS Patients, slated to be available by the end of this year. Otherwise, my other thought was to write about other communication devices like the DynaVox or MyTobii. In my opinion, other than a cure, the ability to live with a quality of life must include the use of communication devices. There is a great quote from Daniel Webster, which I can't recall right now, but he basically says, he could lose all of his senses except the ability to communicate.
I have a friend who has ALS- is completely paralyzed but by staring at letters on a screen, she can spell out words and sentences and then the computer speaks for her. Her's is a MyTobii but DynaVox just came out with a new component which allows the useres computer to do as I just explained. I am sure they would be eager to help you along with information, especially knowing you would try and publish it.
Well, best of luck and let us know what you end up with.

 

[califsand]

My Dad had a dynavox but refused to use it. He has always been very resistant to using anything that can help make his life easier. When he first got ill I researched lots of the gadgets out there than can aid in communication but stopped because of his attitude about it. Thanks for suggesting these things, I'll look into them. I have to find something that has been on the market long enough for there to be some literature on it, that is NOT provided by the company that makes it. Tricky!