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 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!

My disease is relentless, whenever I feel that it has stopped progressing the very next day new symptoms appear. Now my neck muscles are starting to get weak and my breathing is getting shallow as well. For past month there have been few incidents of choking on saliva, but nothing that would scare me. I’m a trooper as well and am not letting this thing take over me.

The other day I was browsing through old pictures of mine and came across this one. It was taken in December of 2007, at that time I was walking with the help of a cane. This picture made me wish if I could for one more time hold my daughter’s hand and take a stroll with her. One thing I’ve learned from my illness is to enjoy each day of my life as I never know what tomorrow has in stock for me. Same goes for my readers as well, do the thing you always wanted to, make that trip you always wanted to or raft through waters of Colorado or take that skiing trip to Swiss Alps and the most important make sure you tell your loved ones how much you love them because one thing you can’t predict is tomorrow.

There isn’t a major change from last month except that I need help with feeding now. I can still feed myself but my hand tires quickly, so I need extra help. Apart from this life is pretty good. There are banana trees and coconut trees around the house here. All this ensures that I have a steady supply of fresh bananas and coconut water for myself!

There isn’t any noticeable change in my condition from last month’s update. My jet lag from the trip is still there, I sleep from noon till 6 PM daily and then am awake thru the night. I’m trying to change it, just hoping that change comes soon. Last week I completed thirty two years of existence and to mark the occasion we celebrated. The party wasn’t huge, it was just few of my cousins, parents and myself. We went to a restaurant to celebrate.

On the family side, my mother needs to get a surgery done to correct her hernia. Surgery is not yet scheduled, but most probably it will be next week. Post surgery she will have to stay in hospital for about seven days. I will keep you all posted on her condition and recovery too.

Things are as usual, the only major change is my left hand is getting weaker. As a result I have started using text to speech or speech recognition for controlling my computer. Last week I sprained my left ankle, and that took away my ability to stand on my own for few minutes. I’ve tried lot of stuff but it still pains like hell. If it doesn’t get better today I’m going to call my doctor tomorrow. I want to ensure a pain free travel next week.

This past Monday I attended Communication Aids &Systems Clinic (CASC) at UW. There therapists showed me how to use a computer with limited fine motor skills. I knew about most of the stuff, but it was nice talking to someone who is knowledgeable and experienced in that area. They showed me communication devices which I might need and future. All of these devices start around $8000, and can go anywhere around $15,000. It all depends on the options that user chooses. The new ones coming out have a technology called EyeGaze. It allows users to control the device just by eye movement. I asked them if I can just by the communication software and not the device. They told me that it’s possible. There’s a company called Eye Response Technologies, which markets the software called LifeMate. Sweet! That’s what I was looking for.

Yesterday my daughter dressed up in all bumblebee costume for her preschool. The costume was for a Halloween party at her preschool. She was all excited to be in a bumblebee costume, and was running around the house flapping her hands. After some time she comes to me and looked disappointed. I asked are what happened, and she said “I can’t fly”! But she later got over her disappointment.

For now I am busy preparing for my trip, I will be flying out next Sunday.