Things have been a little hectic lately so I’m going to take a little time for a short update. We’ve had a few hiccups moving to the den, but we will get down there. I’ve had a couple of rough days, mostly not ALS related. The thing is stress can aggravate some symptoms and that has been a factor. Nobody can avoid all stress in life but the less stress the better my body cooperates with me has been my experience in general and in dealing with ALS.

I do have a great update for today. My Respiratory Therapist, Wendi, brought my new sip n puff over for my Trilogy


100. I love it. The only thing is that I thought it would be completely silent and no air coming out unless I sucked air in. It does run but it is very quiet. I usually know when I’ll need to take occasional air so I won’t just leave it on all the time and it’s still just one simple button. Another thing is that if I take more than three breaths, the alarm sounds. There is a remedy for this and she will have it to me soon. The problem is with any mask there is a place where air is expelled and not on this sip n puff, so the trilogy senses this and thinks you’re not getting rid of the harmful carbon dioxide and off goes the warning bell. She will have the piece needed to stop this soon so no worries. I’m really happy to have this. For times when I just need a little help with air and don’t want to deal with a mask, It’s a great and helpul alterative. Here’s a picture of it. Not the best picture. I’ll post one with it on my chair soon. It will be great attached to my permobil c300 when I’m out. Wendi also gave me more four jars of preserves she made. I have know idea when she finds the time for all she does!


I’ll be having spaghetti delivered soon from my Step Mother, Gracie. I’m looking forward to that. Tony is gone to work out right now and is bringing home a movie. So it’s dinner and a movie night here. Tomorrow my Mother will visit.

I’ve added a couple of things to the website but still have several things I want to add. Hopefully I’ll be able to within the next few days.

While I have a few minutes today I thought I’d give a quick update and I plan to be back to more in depth blogs very soon. I miss it. On days I don’t blog, especially by the second day or third day, I go to sleep feeling like I’ve forgotten something very important. I have really, not forgotten, but didn’t accomplish something important to me. I’ll be back soon. I appreciate each of you.

Until next time, take care,


I forgot to actually post this Friday. I will get back soon!

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