Tag archive: ALS clinical trials

Facing Who I Am

I’m finally writing a post. It’s not one I’m looking forward to. I’m facing who I am and putting it out there. Sure, I can nice it up a bit, but I said I was going to be honest about myself from the beginning and I see no point in putting a fake persona of…

What Has Taken Me By Surprise

Today I feel great except for a little soreness from using my upper muscles more than usual. I am not complaining. This is an unusual  thing about having more strength from my surgery. It’s there, but when I us it too much, which isn’t hard to do, I’m very sore. I can live with it…

Oh Snap!

Most people snap their fingers without thought and don’t lose the ability. If the ability is lost due to a disease like ALS, it doesn’t return. I lost that ability because of weakened muscles in my right hand. Hey ALS: I can do it again – Oh Snap! I could still snap my left side but…

My Feelings

I need to let out some feelings I’ve been dealing with. I’m just going to let loose. Any writing order out the window. I’m writing my feelings, my thoughts as they come to me right now. Just go with me, please. I was very lucky to have my neurologist offer me the opportunity to participate…

I Won’t Stop Fighting

It’s been longer than I would like since my last post. I used to feel panic coming up on a week without blogging. This has been something helpful to me in dealing with ALS that I don’t want to lose. I try to not worry myself about it. If it’s stressing me, that’s no good….

My First 2014 ALS Blog

The past few blogs have been progressively difficult. After deleting several long drafts I’ve decided to just sit, write and publish. I hope it comes together enough to be worth reading. This used to be more like a public journal of my personal experiences and feelings while dealing with ALS. The stem cell surgery changed…

Over Two Weeks Out of Stem Cell Surgery

Here I am over two weeks out of stem cell surgery after being so unsure for seemingly a very long time if I would make it all the way to the OR. I did and I’m so grateful! Yes, I still have ALS but I feel like a warrior that was slipped an extra weapon that my comrades…

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…

ALS Clinic Day

I’ve had it rough the past few days. In my last blog post I mentioned not resting before clinic day. I’ve been paying the price for that. To make it worse, Friday was the longest and most intense clinic day I’ve had so far. The great news is my breathing is holding up well. I don’t…

Validation of Biomarkers Study in ALS

Yesterday I went to Emory for my Validation of Biomarkers study in ALS. It was also the first time being filmed for the documentary at Emory. Matt Ruggles was filming and I barely remember seeing him there once we were in the room. When we were led to the small exam room, I at first thought it…

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