Few of you have wanted to read the book Nishant wrote about the time he spent with her daughter, Anika.

The reason he wrote this book is because he thought that this book would help in filling the void that his absence has left in his daughter’s life. The book chronicles the time that Nishant spent with her daughter since her birth till December 2010. This is a photo book that contains pictures and small write-ups for each month.

The link to buy his book is below.

http://www.blurb.com/bookstore/invited/1779966/c3357cb753183742c96ade43337569a7?utm_source=TellAFriend&utm_medium=email&utm_content=2266272

Thank you all for your condolences.

Sushant

Nishant Upadhyaya (November 21, 1977 – August 31, 2011), age 33, passed away on Wednesday, August 31, 2011 after a long illness.

There will be a funeral service on Friday, September 2, 2011 at 2:00 p.m. at Cress Funeral & Cremation Service, 6021 University Avenue, Madison WI 53705.

Sushant Upadhyaya on behalf of my brother, Nishant Upadhyaya

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.

Back in December of 2010 my condition was not so good as I was reeling under nonstop cough for days. Managing my condition was not so easy as I couldn’t go to see my doctor due to extremely cold Wisconsin winter and my own frail body. Consulting my doctor over the telephone wasn’t helping either. That’s when I decided to give hospice care a try and signed up with Hospice Care Inc.

I was avoiding hospice for a long time because by definition it means end of life care, in short I was giving up my will to live. But giving hospice a try was a very good decision. Folks at hospice has taken over the responsibility of managing my condition thus allowing me to focus on other things important to me. There is a nurse and a social worker assigned to manage my care. Both of them together make sure that I am comfortable and have all the things and equipments I am in need of. My nurse visits me every week to take a note of my condition and consults my doctors if needed. Hospice is taking care of my medications as well, and the good part about it is that there is no copay for me to pay thus saving me some green. Apart from this I have two CNAs who visit me every day around noon and night to help me with activities of daily living.

In short I am very satisfied with the care that folks at hospice are providing. If you are in the same boat as I am and are wondering about hospice, I recommend giving it a try.

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.

Looks like there will soon be an alternative to Rilutek. I hope this drug does well in phases 2 & 3 of the trail.

A double-blinded, placebo-controlled, Phase 1, single ascending dose study was performed to assess the safety and tolerability of four single intravenous doses of NP001 in a total 32 individuals with ALS. The primary objective of this study was the establishment of safety with patients being assessed at select time intervals for seven days post dosing. The secondary objective was to investigate the effects of NP001 on an ALS disease-associated blood biomarker pre- and 24 hours post dosing.

Single dose safety and tolerability of NP001 at four different dose levels was established in ALS patients. Importantly, following a single dose, there was a dose-dependent, statistically significant improvement in blood levels of the biomarker thought to be involved in ALS disease progression; this is a first in ALS.

Robert G. Miller, M.D., the study’s principal investigator and Medical and Program Director of the Forbes Norris MDA/ALS Research Center, commented, “NP001 appears to have affected the level of a biomarker directly related to ALS pathogenesis in a dose-dependent manner. This is extremely promising and is virtually unprecedented in ALS research. In addition, the safety profile of NP001 is very reassuring and gives us confidence going into the Phase 2 clinical study.”

[From Neuraltus Pharmaceuticals]

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.

This is an interesting development, I am sure that researchers will find a way to apply this technique to help develop some treatment for ALS.

Researchers for the first time have induced robust regeneration of nerve connections that control voluntary movement after spinal cord injury, showing the potential for new therapeutic approaches to paralysis and other motor function impairments.

[From In breakthrough, nerve connections are regenerated after spinal cord injury]

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.

I haven’t updated my blog for quite sometime now.  But fear not, I’m back and will be updating my blog regularly.  I needed sometime to adjust to the technological changes that I need to keep up with my illness.

This is really encouraging, there is going to be a new drug In the market soon. Finally an alternative to very expensive Rilutek, I’m so excited…

In Part 2 of the study, 92 subjects were re-randomized to receive daily doses of 50 mg or 300 mg of dexpramipexole for 24 weeks. In addition to results again suggesting a dose-dependent trend in slowing the rate of disease progression as measured by the ALSFRS-R, there was also a trend toward a survival benefit in the 300 mg group compared with the 50 mg group. In an exploratory test comparing subject rankings on the basis of mortality and functional outcomes, subjects in the 300 mg group had a significantly improved outcome compared with the 50 mg group.

Knopp Neurosciences Presents Further Encouraging Trends in Its Phase 2 Study of KNS-760704 (Dexpramipexole) in ALS – Technology | Centre Daily Times – State College, PA

This is awesome news!

In the first federal-government-approved clinical trial of its kind in the U.S., patients with amyotrophic lateral sclerosis (ALS) will be treated with their own stem cells.

The aim is to hopefully slow the progress of the fatal, neurodegenerative disease.

TCA Cellular Therapy of Covington, a privately held stem-cell research and development company, has signed up the first of six participants for Phase I of the trial recently approved by the U.S. Food and Drug Administration.

2theadvocate.com | Features | Clinic to participate in stem-cell trial — Baton Rouge, LA