Tag archive: ALS

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…

Swimming the Solent

It’s been a while. I just have to write when the need comes and I feel the need right now. I ask you please bear with me for any mistakes as my thinking can be a little foggy right now. It’s likely I’ll make a mistake, but no harm, right? If you can’t figure it…

900 Words To Say I Can’t Blog

I’ve been having a very difficult time getting a post out. I’ve also found it difficult to reply to comments. It’s been very frustrating because it’s something I have found a lot of comfort in as well as strength and motivation. Looking at the big picture, I guess it’s not so bad. I began this…

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…

I know all about bad days with ALS

After my last rambling post, I want to at least have a topic to stay on. This isn’t a frenzied post but will still cover more than one topic. My Care Services Coordinator offered me and Tony the opportunity to make the trip to Washington, DC for National ALS Advocacy Day. It’s something we’ve both…

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….

Wheelchair Accessible Van

I’ve been dealing with quite a bit lately, a lot having to do with ALS and some issues totally separate. When you have ALS, it can consume your life with symptoms, adaptions, planning ahead, money issues. The list is endless. At the same time life is still happening outside of ALS and even a healthy person’s life…

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…

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