This has been the toughest summer for me and the worst part is that it is not over yet. The main issue is my breathing, as days go by I am finding that it is getting hard for me to catch my breath. There have been really scary moments when I couldn’t catch my breath for few seconds and would get desperate just to get some air in. it is not possible for me to put what I felt during those moments in words. It takes about more than an hour to stabilize after such an incident. After I am feeling okay its my mother’s turn to get some air as she is completely drained of energy while helping me out. Even my five year old knows what to do when it happens, she just picks up the phone and dials for help. These episodes have taught us to be extra careful and to keep an watchful eye on my breathing.

Even though my speech is still okay but decline in breathing capacity is making it hard for me to speak. At times this makes conversing harder and tiring. The only time I am able to speak without any problems is when I am laying down in bed. The other annoyance I am facing is chest congestion, I have tried many things to get rid of it but it just doesn’t go away easily. It is really worse in the mornings and evenings. I hate having it in the evenings because I am unable to do anything as I deal with it. And finally I have lost a lot of weight because I am unable to eat much. But still I try to eat as much as I can.

And finally I have finished my book and sent it for printing. I will post a picture of it after I get it in a week or so.

I have been using a bean switch for past nine or so months to access my computer. Bean switch requires that I physically press it to activate my computer, but for past few months my fingers have lost a lot of their strength thus making it hard for me to use my computer. The good part about my computer setup is that all I need to keep going it is to find a switch that will work with my frail fingers. After lot of deliberation I decided to try three different kinds of switches made by a company called AMDi. After about a week of testing I decided to order an Adjustable Proximity Switch from them. The good part about this sensor switch is that it requires a very light touch to activate thus making it easy for me to use my computer again.

Health wise I am not doing good, I have lost almost all of my appetite. I don’t know why but I don’t like to eat any more, the sight or even the slightest smell of food makes me feel like throwing up. Still I try to eat daily to avoid getting weaker. My breathing feels stable, but I will find out exactly how it is when I meet my doctor later this month. Finally I have finished writing my book and pretty soon I will have it printed.

Except for the month of December, 2010 was generally a good year. Starting December I was gripped by a very bad case of cold and cough. Initially I thought that it will be over in a couple of days but it lasted for more than three weeks. There were days when I spent my entire time coughing, and because of bad cough I couldn’t sleep in the nights either. I tried all sorts of things to make it go away but nothing seemed to work. Then there were anxious moments when I couldn’t breath and we were just seconds away from dialing 911. My biggest fear was that my cold turning into pneumonia as that would mean a lot more trouble. Fearing the same my doctor prescribed antibiotics, and after completing the antibiotic course my cough started to go away. Finally I am feeling normal again for the past few days.

2010 was pretty okay except for past few weeks. The most noticeable change was loosing muscle control of my left hand, and because of it I can no longer use my left hand for anything. There is some control still remaining in the fingers of my left hand thus allowing me to use my computer with the aid of a switch. My neck muscles are getting weak too and its making it hard for me to eat. But these things are not stopping me from enjoying my time and working on my book. There is few more days of work remaining in the completion of my book, hopefully I will be done with it in the first week of January.

And thats how 2010 for me and let’s see what 2011 has in store for me. I hope you had a good 2010 and wishing you a very happy 2011.

For the past four days all I have been doing is trying to cough. Problem with cough starts around three in the afternoon and it only gets over around midnight. In past it never lasted for so long and wasn’t this intense either. The good part is that I don’t have fever or any kind of infection, but the worst part is that I am so much out of air that I find it hard to speak. Doctor’s advice is to make sure that I keep my lungs clear of mucus otherwise I risk catching pneumonia, in short cough that mucus out. I avoid taking cough medicines as much as possible because it is really important for me to keep my lungs clean, but looks like that this time I have to take some just to get a break from daily episodes of cough. I hope that today my cough goes away for good.

Yesterday I visited my neurologist after a gap of six months. He did some basic physical examination and told me that I am doing pretty good for my situation. We talked about the pain I am experiencing and he told me that I need something stronger than what I am taking at present. So to deal with the pain I am now on a narcotic called Morphine. Till yesterday I wasn’t aware of the fact that prescriptions for any kind of narcotic have restrictions like no refills and can only be prescribed on paper. So every time when I need a refill, I need to call my neurologist. And whenever he prescribes it, he has to sign the prescription on paper and then mail it to my pharmacy of choice! During this visit I got my annual flu shot as well.

After my appointment with my neurologist was over I was scheduled to meet my pulmonologist for a follow up on my breathing functions. After conducting some breathing related checks, my pulmonologist told me that my breathing hasn’t changed much but she advised me to get my lung functions checked in next spring to get an exact picture of change. But looks like that for now BiPAP use is helping me.

Before going to bed last night I took my first Morphine pill, and for the first time I couldn’t sleep through the night. I was kind of dizzy but there was no sleep and yes the pain was almost gone. I guess it will take few days for my body to get in rhythm with a narcotic!

Anyways in my opinion I am doing okay, there hasn’t been any noticeable change in my body since my last blog post in September. I still haven’t finished my work on my book but I am hopeful that it will be complete soon.

September marks the four year anniversary of the onset of my disease, and three year anniversary of the diagnosis. Over all these years my disease hasn’t stopped progressing and it is it isn’t showing any signs of slowing down either, but I am one tough cookie as well. I have learnt to live with it and always keep myself one step ahead of it. Lately I have noticed that my neck muscles are getting weak making it bit of a challenge for me to keep my head up while eating. Weak neck also makes it hard for me to cough. But the good news is that my breathing hasn’t deteriorated further since I have started using the BiPAP.

Some of you recommended that I should write something for my daughter which will enable her to connect with me. Since I didn’t want to leave letters for her and I didn’t want to preach her either with my writing, it was recommended that I write a book which is some sort of autobiography. Based on the suggestions I received, I have started working on a photo book for her. It is going to be a chronicle of things that have happened in my life starting from the day of her birth and ending on some day in 2010. I hope it will help her in connecting with me whenever she need me. Here is the cover page of my book.

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.

A lot can change in an instant, but for me the change has been gradual and anticipated. It’s been about three years since my symptoms first appeared and two years (9/26/07) since I was diagnosed with ALS. Two years back only my right leg was weak, but now both my legs and right arm are gone for good. My left arm is loosing strength too. At present I can use my left arm for short durations as it gets tired quickly.

I visited my doctor last Friday, good news is that my speech, swallow, and breathing are ok. Doctor advised on getting some changes done to the wheelchair to make it more comfortable for me. Let’s see when that happens. During the visit i got the regular flu shot as well, but was asked by doctor to get swine flu shot when it’s made available.

It’s end of September and it’s getting cold. So to beat the winter I am travelling to India. I am going in first week of November and will only be back in end of March next year. Yup, it’s a long trip, but I plan to do lot of things when I am there. It’s going to be wedding season in India and so will be attending few of my cousin’s weddings. I also plan to visit different parts of the country and try some alternate therapies. Let’s see how that goes. But don’t worry, I will blog regularly while I am there and will tweet to. I am also taking MagicJack with me for keeping in touch with family and friends in US.

It’s been little over a month since I stopped working, and I am still busy as usual. I spend mornings making various phone calls and catching up with news. Days when my daughter is at home, my mornings involve playing with her and taking care of things I need to get done. Tuesday nights are busy as well, as my friends stop by my place to play game. It’s really fun and nice break for me. Then on some days physical therapist comes to help me with exercises. So in short, past one month has been busy. Last week I got a TiVo, so now I can pause live TV!

But over this last month, I have lost lot of strength in my right arm. At this point my right arm is almost gone. I am losing strength in my left arm as well, but I think it will help me for couple more months. My legs have given up completely, and so activities of daily living are getting tough, but I am continuously adapting to change.

So Geek Squad finally agreed to give me a new TV. They tried to fix the issues two times before agreeing to give a new one. We ordered the new one yesterday, it’s a Sony this time. Best Buy is going to deliver it next week, so the wait has already started. Another good news, my health insurance has paid for the Hoyer lift finally!

These days I’m hooked on to a computer game called Sid Meier’s Railroads!. It involves creating a railroad empire based on various market factors. It’s easy to learn and challenging to play. Since it doesn’t involve any keyboard interaction and limited mouse use, it’s a perfect game for me. Try it, you sure will like it too.

This week I visited my neurologist for quarterly check up. Well, he acknowledged that I am getting weaker by the day. He said that I need to focus on breathing, eating, and some hand motor functions so that I can use a phone and few other devices. No blood tests this time. He admired the fact that I am still working, I could sense his admiration by the way he told the nurse that “he is still working”.

A while back I posted about Hoyer lift, yesterday I found out that insurance has denied the claim, and I have to shell out around $3K for it. I got it authorized from them before the order was placed, seems like the medical company which supplied the equipment used the wrong authorization code when submitting the claim. So now will have to work with them to fix the error.

And the mega news of all, today we sold our old house. So no more paying two mortgages, now I will have some money for my ‘tech fund’. I really wanted to make sure that my old house is sold before I stop working, as I didn’t want any ‘extra burden’ on any disability payments I will receive in future.

At the beginning of this year I wasn’t sure if I will be able to continue working beyond May. But July is almost here and I am still working. I think I can work for couple more months, but given the unpredictable nature of my illness that can change. Anyways I thank my co-workers and employer for making it possible for me to continue working.

It seems my tiny steps walking days are over too. The other day I wasn’t able to take 4 steps from my wheelchair to bed. So there goes my legs and here comes Hoyer lift. My right hand is very weak and only thing I can do with it is use mouse and keyboard. My left arm is getting weak as well. It’s getting hard to lift heavy things with it. Looks like pretty soon I will need help in feeding. The thing that worries me most is my morning cup of tea! how am I supposed to drink it if I can’t lift the cup. But my speech, swallowing and breathing are still holding on.

Even after being so limited in my abilities to do things, I still don’t consider myself disabled. May be it’s because my mind is still as sharp as it used to be. I think it’s getting sharper as I find more efficient ways to do things!

It’s May and days are getting warmer. It feels nice to have warm days after such a cold winter. Starting Monday I am going to work from home. This is a great help for me, because now I can just go to work not worrying about getting ready or about walking down the hallways. I am going to use webcam and live meeting to keep in touch with my team. I hope this works out great. Wish me luck!

Here are some of the thing that have changed in April:

1. I am no longer able to with the help of cane, because it was getting hard to maintain balance while walking. So got a walker to help me get around.

2. Went to meet my neurologist last week for quarterly appointment. He asked me to keep an eye on stem cell thing as they expect good results from it. Everything else is ok.

3. Finally settled in the new house. My phone number has changed and if you need to call me from your computer then use the button below.

4. On May 16th there is a walk organized by MDA to raise awareness about ALS. If you want to participate, just give me a holler.

Well March was very busy for me. There were lot of things that happened in March and here are the updates:

My old house was becoming too difficult for me. It was a two storey house and I was not able to negotiate the stairs on my own. So we found an accessible condo near by. We moved into this place over the weekend (3/28). It’s little small, but fits our needs. I had the builder do some last minute changes to make it easier for me to get around. My old house is still on sale!

My daughter turned 3 in March! The other day she looked at a bruise (very old) on my knee and then asked me to be very careful and even showed me how to maintain balance while walking!

Now about me, looks like my days of walking are over. It’s totally impossible for me to walk using a cane. So yesterday I switched to a walker. I can’t believe how much eager I was to let go of my cane. But walker won’t help me for a long time either. I am in process of getting a powered wheelchair. I hope to have it by May end. With this I am also thinking of stopping work. Lets see when this happens.