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Where I Spend My Time

Where I Spend My Time In the morning my husband has this bed prepared and I spend my day here. At night my husband prepares this in our bedroom, we usually watch TV for a while. Then the pillows are removed and I sleep with my head elevated. This has stopped me from waking in…

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…

Dealing With ALS

I think this is the longest I’ve gone without writing. I have prepared to write several times, but the words don’t come. I tell myself, maybe tomorrow. I do have things to say. Maybe it has to do with – life just hasn’t been easy lately. We are still in this house which means I’m…

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…

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…

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