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Some of you may remember me, I use to post here some. After a six and one half year battle my wife passed quietly on to heaven yesterday afternoon. It was a peaceful moment, just the two of us, with my head on her chest as her heart beat it's last beat. An amazing women who fought ALS tooth and...

Serena needs a new electric toothbrush. Right now she is using a Colgate 360. An inexpensive little toothbrush that is just not doing a very good job. I noticed the some of these can be a little pricey so I thought I'd see if anyone here has some recommendations based on your experiance before I...

Our pulminologist was out the other day making some adjustments to Serena's bi-pap and we where talking about the lack of protablity. Since Serena needs her bi-pap 24/7 now she can only go where the electric cord will let her. He suggested we look into a non-invasive vent. He said there is no...

Yesterday Serena could not finish her shower. She had to stop and spend time on her bipap. This was not a moment like we have had in the past where she simply needed it for comfort. This time she needed it for survival. In the short time it took me to get her hooked back up she was amost in a...

Just finished a wonderful day with the most awsome woman in the world. For years we have celibrated our aniversary by decorating the house for Christmas. This year both of our daughters helped along with my Mother-in-law and sister-in-law. Had a really great day. Serena said today that if I knew...

Anyone had any experience with photobiomodulation? A friend of ours works for a chiropractor and she thinks it might help Serena. The equipment is made by a company called BioVeda Technologies. Here is a blurb from their web site: Low-Level Light Therapy (LLLT) has been investigated and used...

It has been awhile since I gave an update. Serena is doing OK. Her FVC was down to 18% at our Oct. clinic. Tomorrow hospice is coming in to get us set up. This will get her some constant medical monitoring. She remains as strong as ever. Early in Oct. she told me she wanted to make the 16 hour...

For the first time in 19 months Serena shows no drop in her FVC, MIP or MEP! Her numbers where just what they where 2 months ago. They are still low but no drop was a relief.

We had a bit of good news at the clinic. Serena had not lost any more wieght and after 14 straight months of losing 5% of he FVC every month she she was only down 4% since the first of April (2% per month). I was so afraid if that trend did not slow down I might not have her much longer. I...

Serena couldn't finish out the school year.:( After only being able to work a day and a half last week and none this week at all she just can't do it any more. She just does not have the energy or the lung capacity. She is rarely off her bipap any more. It is really hard! She wanted more than...