Tag archive: ALS awareness

My First Real Outcome Measurements

The outcome measures I’m writing about were documented, but have not been officially published. I had my first real outcome measurements since my stem cell surgery last week and the feelings are difficult to explain. Overwhelmed doesn’t do it justice. I’ve mentioned better dexterity in my hand allowing me to sign and communicate much easier…

Post Stem Cell Surgery – Pics & Video

Alright, another week post surgery and I’m feeling so much better than last week’s post. I have much more range of motion in my neck. Even if I do something that aggravates it, the pain is much less intense and only lasts a short time. It’s still a little difficult moving upper body forward and back…

Stem Cell Surgery

I finally got the news I’ve been waiting for. All the months of testing, waiting and hoping that I’ve been posting about has resulted in a date set for stem cell surgery at the end of October. Surgery for the Phase II, Open-label, Dose Escalation and Safety Study of Human Spinal Cord Derived Neural Stem Cell…

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…

My Blog My Documentary and More

This week has gone by fast. I’m thankful because it has not been a nice one. I had some website issues that have been finally taken care of. On top of that I’ve had lots of muscle cramping going on and my left knee and ankle hurt from scooting myself around in my transfer chair with that leg. I need to…

The Restroom

I can’t wait to be able to go places in my power wheelchair. I do have one big fear: The Restroom. Right now if I find a place with a restroom that has a large enough stall to drive my chair in I’ll be fine alone. I have enough left arm and left leg strength to transfer by…

Today I Cried

I keep myself busy. I think it’s good for my emotional well being and overall quality of life to be active, to feel I have a purpose. It’s very important to me that my family is left with something meaningful. A piece of jewelry, or a memorable household item is nice but I also want them…

My Loyal Friend

I have a wonderful loyal friend that I spend almost every minute of my life with. It’s my little 7 lb toy poodle, Abby. Last year when I knew I would be spending so much time at home, Tony and I decided to get a dog when we sold the house and moved. We already…

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