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Stopped the nursing to spend time with family, 21st is the day, pray that it goes quickly. I am close to being " locked in", that is the main reason

I have had als for 6 years and vented for almost 3 years. I made this for several reasons : physically (i a basically paralyzed from head to toe), quality of life, financial, insufficient nursing, burden on my family, ready to meet my maker and make me whole again. I am at peace with the...

Re: New fALS gene, NEK1 Are NEK1 mutations associated with both familial (inherited) and sporadic (non-inherited) ALS? Yes – NEK1 mutations are associated with both familial and sporadic ALS. Together, NEK1 is associated with 3% of all ALS cases. 3% of all cases, that is nothing...

Re: New fALS gene, NEK1 The media is portraying as a breakthrough for finding a cure for all of ALS. But this gene is only related to familial ALS, not sporadic which is the majority of cases of ALS

I have no where to express how I am feeling, this place is the only place I could think of. Because I am totally paralyzed and on a vent we qualified for the medicaid tech waiver, which allows us 16 hours per day of nursing. We live in rural VA so it is difficult to find nurses. We had one...

So, I heard back from the DC/MD/VA chapter : "Finally, Major League Baseball gave significant gifts to the Ice Bucket Challenge. A number of ball parks are very supportive but unfortunately DC and Baltimore have other partners they are supporting. That said, the Yankees are behind us 100%...

Nice to hear, I am going to keep pestering the nationals I wonder if they are going to trot out Pete frates, or if they really go all out like they did for breast cancer, maybe have everyone wear Lou Gehrig number

As usual the MDA and ALS Association failed to produce anything of merit for ALS Awareness month. What the hell are they doing with all the money from ice bucket challenge. My attempt to bring awareness to this disease by contacting local sports teams and business was a waste of time, NOTHING...

I eat explicitly through my peg tube. In the beginning I was eating 4 cans of osmolite 1.0 then they switched me to 2.0 which is much thicker and I get very full after each can, I only have 2 cans a day

Doubt you will, I have emailed and tweeted mlb, players and sportscaster, no response