I Have Experienced Great Kindness

I have experienced great kindness over the last week. It’s so easy to feel bitter, especially with ALS. It’s easy to get frustrated with somebody complaining of something they have to do when right now I so wish I could. What I have to do is keep reminding myself I haven’t always had ALS and…

My Husband Takes ALS Deal 100% With Me

Hello everyone… It’s been longer than I’d like since I last wrote. I’ve had a whole lot of nothing going on. As I’ve mentioned, I’m in the phase II stem cell trial and that means I may or may not have the surgery to inject the stem cells. There has been a lot of tests and a lot of hurry up…

The ALS Roller Coaster

I love roller coasters! I love them to slowly climb high and drop fast, upside down and with all kinds of unexpected twists and turns. I’m on one right now, but it’s no fun adrenaline rush. It has all I could ask for in a roller coaster. There is a big difference, this is real fear, real danger…

Hello and Happy Friday

Hello and happy Friday to those who keep up with what day it is at all times. I once did. Now, I do when needed but Tony keeps me in check and our calendars in sync so it’s just a quick look away. Dad will be bringing dinner over about 7:00 that Gracie cooked. Friday is…

Family Updates

What a busy past couple of days I’ve had! The best part for me is that it wasn’t all ALS stress busy. Friday was an especially nice day. One of those rare days that the stars align just right. I wasn’t having or feeling particular bad ALS wise, which I have been concerned about for this day….

Excitement and Disappointment

I’ve had lots of alternating excitement and disappointment lately. I guess for the most part that’s called life. It just seems magnified when ALS is always with you. That goes for the person with ALS and the people who love them. Don’t get too used to anything. It will change. What an adventure ALS is….

The Den and More

It’s August 5th and we’re still not in the den… Have I had my moments of being frustrated? Yes I have. Have I had moments of letting my frustrations be  known to Tony with an argument ensuing? Yes indeed. Have I later regretted it? Yes. OK, quiz over. Tony is doing everything he can. I’ve made a few…

It’s Friday

It’s Friday! That used to mean something to me. At a time, years ago, it meant let’s get this party started, later it served as a way to keep my schedule in check with where I stood in days to obligations. Now it’s pretty much just a day. It’s not uncommon for me to be two…

Stem Cell Study

What a day yesterday was! This has been the hardest blog post for me get going with. I’m just going to start right off with why. I am officially in the ALS phase II stem cell study at Emory. Even though I’m officially in the study, Dr. Glass made very sure I am aware that between now and…

Ultrasound of my Diaphragm

It is a rainy Sunday… Since I don’t have to be out in it today, it’s very relaxing to watch the rain falling outside my window. Relaxation is just what I need right now. I have an Emory ALS Center visit this Tuesday. I’m feeling a little nervous so I’m thankful for the calming rain….


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