Thursday, February 21, 2008

Good Humor

I have never quite understood the phrase "at least you haven't lost your sense of humor." How would I lose my sense of humor in the first place? It's not something tangible like a set of keys. To me the phrase also implies that you are basically messed up both physically and mentally, but you can still laugh at yourself. People usually use the phrase after I've said something that makes them a little uncomfortable like "hey, I may be crippled, but at least I get the best parking spaces."

Somehow as my disease progressed, my sarcasm began to be perceived as humor. Now I'm told that I have such a good attitude, when I used to be told not to be so negative. Only people who knew me before my disabled detour recognize the acerbic, sharp wit that has always been a part of me. They know when I am really not feeling well because I can't get out the one-liners. My husband and I are particularly good at bantering back and forth and to the casual observer it sometimes seems that he is being overly mean to me. The truth is it would be wierd if he stopped doing it just because I have MS. So much of our lives has been turned upside down that at least we have this one thing that is still the way it was before.

The fact that I can find humor in my situation means that I am creative, twisted or a combination of both. I like to describe what comes out of my mouth as the result of "selective tourette syndrome." With all the scarring on my brain, who's to say that I always know what is and isn't appropriate. I do know that I won't be doing standup comedy anytime soon. (if I have to explain that, it doesn't seem as funny)

Friday, February 15, 2008

Talking the Talk with Speech Recognition Software

There is a type of assistive technology that I use most every day. It is easy to use and relatively affordable. I am referring to speech recognition software that I began using back in 2002. At the time, I could still type fairly well but I knew from experience that my fine motor skills could be affected during an MS exacerbation (attack). I requested the software and a microphone from my employer as a "reasonable accommodation." My motto has always been that crisis management doesn't mean you wait until a crisis to figure out how you'll manage it. In other words, I began using the software before I needed to use the software and I'm glad I used that strategy because now I am very proficient talking to my computer.

Using speech recognition software reminds me of the old days of using a computer. The adage back then was that the computer was only as intelligent as the person using it. The same holds true for speech recognition. The software just tries to put down the sounds it hears, making its best guess. It can't interpret mumbling or stammering and it certainly can't make babbling or rambling logical. Patience is more than a virtue when using speech recognition; it's a necessity. If I start yelling into my microphone "that's not what I said" or begin to swear, my rantings will appear up on the screen.

Here is my advice for making speech recognition software work for you. First, don't look at the screen when you're dictating. You'll find yourself using an unnatural speech pattern and the quality of the recognition will be poor. You're better off to dictate in sentences or even paragraphs and then go back and edit. Secondly, take the time to train your software to learn your speech patterns. Things such as a regional accent or colloquialisms make it necessary for your computer to understand how you talk. Finally, and most importantly, manually proofread your text before you send it off by e-mail, send it for publication etc.

Like it or not, computers have become an important part of our everyday lives. Speech recognition software enables someone like me to stay connected to the world without dependency on my fine motor skills. I certainly would never have attempted this blog without it. So, if you are using Microsoft Vista, check out the Ease of Access section under the control panel and there you'll find a sophisticated speech recognition program for you to try. All you need is a microphone and a bit of persistence, then you too can start shouting at your computer.

Learn more about speech recognition software

Friday, February 8, 2008

Someone To Watch Over Me

I can't do much for myself anymore. You name it and I can't do it. When I wake up in the morning, I need assistance with getting out of bed, showering, dressing, grooming and even getting my pants down to go to the bathroom. During the week, I pay a young woman to come in and help me between 10:00 and 3:00 while my husband is at work. I had been going to an adult daycare, but I actually got kicked out because I was too physically disabled. Most of the clients there were in their 70s and 80s. They were ambulatory and in the early stages of Alzheimer's or dementia. It certainly wasn't my first choice for care, but it was a helpful backup and a few days ago I could've used one.

My usual keeper was struck down with a stomach virus and couldn't come to work for me. This certainly put me in a jam because the people I know who aren't working are either older or they have MS like me. Neither of those two groups are up to the lifting required to help me. Even when I was going to daycare, I had to give them a week's notice so they would have adequate staffing. People like me are not allowed to be spontaneous; we need a plan for everything.

I started thinking that there must be a better way for me to stay at home and be independent. Since there are no original ideas left out there in the world, it turns out that other people have been thinking about this problem too. The Japanese are working to develop robot caregivers for the elderly and the physically disabled. You've probably seen the creepy-looking Asimo from Honda, but there is also a creature called Twendy One. Thus far, the company responsible for Twendy One has spent seven years and billions of dollars on research and development. The makers of Twendy One in particular even demonstrated their creation helping a man from the bed into a wheelchair. Sounds cold, right?

Well, there's still a long way to go. I watched the footage on You Tube and there is no way that the human is really disabled. He put his hands on top of the robot's hands and that was enough to lift him up and pitted him into the wheelchair. I assure you that such transfers are much uglier than that. For me personally, I have to be lifted from under my armpits. A hug is best. Beyond the technical difficulties is the issue of cost. The current price tag estimate for this piece of technology is $200,000. If I could afford that, I could have around the clock paid human caregivers.

I won't be putting my order in for a robot anytime soon. This is what bothers me about new assistive technology. What good is a wonderful new tool like a caregiver robot, a power wheelchair that climbs stairs ($30,000), a track lift system that can help with transfers and many other items if nobody can afford them? My health insurance, which is pretty typical, has a yearly allowance of $1000 for durable medical equipment. Even Medicare, if it approves the equipment, only pays 80%. Obviously, companies aren't spending all this money without expecting a return on their investment, so somebody will be able to afford these devices. Maybe the hospital or nursing home of the future will be staffed with robots? Let's just hope that it doesn't end up like "I, Robot."

Watch Twendy One: