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My ALS Documentary

Hello to all, I haven’t posted anything the last couple of days. I’ve been busy with a couple of things but, today was very important to me. From early on I’ve had the idea of documenting my experiences throughout the course of ALS. I’ve wanted it done in a no holds barred manner. I strongly…

Benign Fasciculation Syndrome

I decided to go with a post about Benign Fasciculation Syndrome (BFS) and what I’ve recently learned about it. So here we go… I have a feeling that most people with ALS have dealt with someone wanting opinions or advice about their muscles twitching. I see BFS come up in searches for about anything ALS related, and I…

Two Days… Two Sons… Two Good-byes

Hello all. I just want to write a quick post to tell you the next two days are filled with good-byes. Tyler will be heading out in the morning, then Steven will be heading out Wednesday. Between dealing with those and a couple of other things I’m working out, I may not have time to blog, but…

My Birthday Weekend

Hello to everyone. I’ve spent the last few days with family. It has been exhilarating and exhausting. The exhaustion is strange because I haven’t done any more physically than usual. I used to be the one running up and down the stairs and getting things prepared and nothing could stop me. Tony takes care of all…

Permobil C300 Corpus 3G Power Wheelchair

There are many factors that go into choosing the right Power wheelchair for you. I’m going to focus on how I chose mine, a Permobil C300 Corpus 3G. Soon before I actually got the ball rolling with the process of insurance approval and all the hoops you have to jump (or fall) through, I did…

Let’s Talk About Sex… with ALS

Where to start…  First of all this isn’t just about the act of sex.  It’s about intimacy in a relationship when something like ALS enters unwelcome. I can see how one might think the sex aspect only applies to young or new relationships. That’s not the case.  Yes our sexual activity has changed over the…

ALS… A Communication Loss

Hello to all… I didn’t get a post in over the weekend because I also have a project I’ve been trying to give some attention to. I started it a few months after diagnosis. Believe it or not, I get a lot done from my bed doubling as an office, especially with Tony around to…

A Gift of Independence

Hello to all….  I was working on a different post but it will have to wait for another day. I’m too overwhelmed to think of anything else. My Stepdaughter, Tasha, came to visit this evening. She, her husband Billy and the three boys Jesse, Ethan and Uriah came in two vehicles and left in one. They gave us their van!  They…

Death with Dignity… My Thoughts

To my loved ones reading this, I want to say this is not a reflection of my intentions at this time. It is something I believe most people with a terminal illness like ALS have had cross their mind. At this time a person diagnosed with ALS is aware they are dying, and it will…

Great Saturday and More…

I had no intention of blogging tonight but it’s close to 5:00 am and I’m still wide awake so here I am. It’s still Sunday to me even though I know some people are waking for work. Yes, I remember Mondays well. Days seem to blend together now. I know days by Dr. visits and…

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