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There are scholarships out there for children or family members of PALS and deceased PALS. I'm just recommending that if you apply and send in all the necessary paperwork, you should also follow up regarding their decisions or appropriations. The various organizations have staff turnover and...

ARGH! Ok, I literally had to grab onto the sides of my shorts or I was gonna jump across the table and throw a punch to his jaw that would knock him out of his chair! I ran into one of my husband's relatives in a parking garage(I just finished hiking and was stopping to pick up my paycheck)...

After 2 weeks of high adventure, sleeping under the stars, returning to a place my husband and i spent our first x-mas 20 years ago and spreading his ashes....I'm feeling awesome! No phones, no email, left the teenagers home. I finally had a real opportunity to connect - I'm still riding the...

For those caregivers who were spouses with kids, I'm sure you can relate that in addition to caring for your spouse, there was always the overwhelming concern about the kids too and how ALS completely impacted them as well. ARGH! All so hard. i've watched my oldest daughter learn and...

Although I was always careful with my back when I was a CALS, I still did plenty of lifting and precarious movements because it was necessary or the only solution given the space etc. Never had a real problem with my back other than some stiffness. I felt like I had far more wear and tear on...

Certain things really dig at me. I've tried a number of tactics today to subdue this anger and no success. At my husband's funeral we requested "in lieu of flowers" and gave the name of an organization that helped us tremendously. Basically, I am sent updated lists with names and addresses of...

Anybody know about using O2(2ml) without bipap for ALS? I've done plenty of reading and research and everything pretty much says no O2 unless there is another lung problem or a low flow o2 may be used with bipap. Apparently when our hospice nurse called the clinic about it the pulmonologist...

I wanted to draw on your experiences with the PEG as we prepare. I need to know the right questions to ask. Is there anything that come to mind that as you look back think, I wish I had know, or I was never informed... Also, not only the procedure but what to expect on my part as a caregiver...

let me preface with I've done research on vans but i have a couple questions I need sorted asap because I'm supposed to put down a deposit tomorrow. The van we are going to purchase pretty much has power everything, side entry, removable front passenger seat but the van doesn't "kneel". How...

I don't know how to curb the well meaning folks that are really just creating more stress. I'm a bit angry right now. My sister in law came over while I was at work and had my husband drink her elixer...basically he drank about a cup of butter - she wanted him to drink more. he doesn't...