ALS

June 23, 2011
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Not An Easy Summer

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. … 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.

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April 13, 2011
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Enjoying Hospice Hospitality

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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. … 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. … 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.

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April 3, 2011
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Time For A Switch

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 [...]

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December 30, 2010
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Terrible Month, Good Year

There were days when I spent my entire time coughing, and because of bad cough I couldn’t sleep in the nights either. … 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. … 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.

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November 30, 2010
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Clinical Results from Phase 1 NP001 Study in the Treatment of ALS

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. … 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. … 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.

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