Whenever my daughter wants something she just says “papa can you get ‘whatever she wants‘ for me in the box”. The box she is referring to is the box in which UPS delivers the goodies and she is asking me to order it online. This gives an idea that how important computer access is for me.

My hands are so weak that it is impossible for me to use a regular keyboard and mouse/trackpad. As a result of this weakness I have to use a switch to access the computer. A switch is small device that sends a signal when activated. There is wide range of switches to choose from, and the one I use is called a bean switch. It just needs a light touch to activate. The switch is connected to a usb device called a switch interface. A switch interface is designed to convert the signal from the switch and send it as a mouse click to the computer. Switch interface can generally emulate key press or a mouse click or a joystick. And again there is a wide range to choose from. I am currently using a switch interface called Swifty.

On the software side I use a scanning program called SwitchXS. SwitchXS is activated when I press the switch and with few presses it allows me to do anything on the computer. I am also using a predictive typing software called KeyStrokes to help with typing. This screen shot will give you an idea about how it works.

The way scanning works is: the first switch press activates SwitchXS which in turn starts scanning a panel. I then press again when the scanning line highlights the row which has the function I want to use. SwitchXS then starts scanning the row and I press again when it highlights the button for the function I want.

To a regular computer user this might sound slow and tiring but the fact is that it is not and with some clever scan panel design I can do things faster and easily. I have designed two scan panels to make my life easier. here is one for general computer use.

This is the one I use for typing.

When time to use a speech program comes, I simply need to add a text to voice software to the mix making my Mac a full-fledged AAC. And in future if my current switch does not work for me any more than all I need to do is get a different type of switch that will work!

It was on this day last year that I had to take an early retirement from my job because of my illness. At that time I was bit worried as I wasn’t sure about what I’m going to do without work. But I am glad that I made the call to stop working at the right time. I still miss my job, but on the other hand I got time to spend with my family, especially with my daughter. I even traveled to India during the winter and got a chance to meet my uncles, aunts, cousins and really old friends.

Since last year my has gone down as well. I have lost all of the strength in my hands and only have small movement in the fingers of my left hand. I now use a switch to access the computer. I no longer have strength to cough and need to use a BiPAP to get a good sleep. But even with this severe disability I look forward to each day as I get time to enjoy with my daughter.

Today after a long time I had a nice afternoon nap. Until yesterday I could only sleep for about half an hour, but today i dozed off for two hours. I was more relaxed and energetic after today’s nap than ever before. What changed? Well yesterday I got a breathing device called BiPAP and it made all the difference. The device is made by a company called ResMed and is very quiet and compact. I choose a nasal pillow type of mask for delivering the air. The mask is light and easy to use as well. The device has a remote monitor attachment which allows my doctor to keep track of my breathing and device functions. My doctor is going to monitor it for a month to make sure that I am breathing ok and that the device is working good for me for me.

In short I’m able to sleep well again!

Few days back I wrote about my dilemma regarding writing letters to my daughter. A friend of mine shared this radio talk with me and it really helped. You might want to listen to it starting about at 9:40 minutes into the talk.

Act One. Letter Day Saint.
Rebecca was 16 years old when her mother Elizabeth died of cancer. But before she died, she wrote letters to Rebecca, to be given to her on her birthday each year for thirteen years. At first the letters were comforting, but as time went on, they had much more complicated effects. David Segal tells the story. David is a reporter for The New York Times. (14 minutes.)

[From Parent Trap | This American Life]

As much as I want to be there for her when she needs me, I really don’t want her to grow up under my virtual shadow after I am long gone. I would rather have her tread her own path and get all the happiness that she deserves along the way.

Today I had an appointment at the pulmonary clinic to check for my breathing functions. Well the news is not what I want to hear, exactly an year ago my breathing capacity or FVC was at 82%, and now it is at 48%. Doctor at the clinic has given me a gadget to check for my oxygen levels. I have to hook on to it for the night and then send it back tomorrow for reading. Anyways it looks like that I will have to start using a BiPAP for breathing.

I will be getting a new addition to my wheelchair so that I can continue to drive it without my hands. As my left hand is getting weak, it’s getting hard for me to use the joystick and so the need for a new way to control it. What I will get is called a ‘Head Array’ and it will allow me to control my wheelchair by tiny head movements.

Other than these new things I am doing good. And yes, this past April I went past the 100 mile mark on my wheelchair!

The one thing that troubles me about my illness is that who will teach my daughter the lessons that I have learned over the years? Someone suggested that I write letters to her which she can read later in her life. I tried writing but couldn’t go further than writing ‘dear’. It was just hard for me to write because it made me realize that she will grow up without me and I couldn’t comprehend what she might be going through when she reads them. Nevertheless I still want my experiences to be there for her when she needs. This article on CNN might just be the answer. What do you think? Is ‘Dad Council’ something that could work for me? Trust me it is very hard to digest the fact that I might not be around when my daughter needs me the most.