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I had my clinic visit today. I am happy to report that my FVC has gone up to 63%. It was at a steady 30-32. It has to be the diaphragm pacer. I have been taking RILUTEK since diagnosis. I take robinul and guaifensen for the saliva.

I am Bulbar onset. My first symptoms started in the summer of 2008. I had a lump in my throat in my throat that I just couldn't clear. Then the slurring and shortness of breath. My speech deteriorated so bad that I went on medical leave August of 2010 and diagnosed November 30,2010. I still have...

I thought this was very good from Joseph Prince and wanted to share it with you. Meditate On My son, give attention to my words…Do not let them depart from your eyes; keep them in the midst of your heart; for they are life to those who find them, and health to all their flesh. Proverbs...

My deepest sympathies to you.

I am so sad. She was the epitome of kindness. She will be missed. Another ALS angel gone.

Hello, I had the pacer surgery in July of 2012. I think if you qualify you most certainly will want to get it done. Do not fear that it will be a bother or a chore for your caretaker. It is very simple to operate and to care for. I will admit it has been a challenge to get the correct settings...

Great news Sharon. Very happy you are getting the DEX. Take care

Sharon, I hope and pray that they can't deny you the DEX. Be strong and know there are those supporting your cause. Hugs to you my friend.

MESSAGE WAS TOO LONG FOR ONE POST I laid there last night on my back and I noticed the firing wasn't any kind of pattern at all. So weird, I would feel 3 jolts then a few seconds another, then nothing. Then it would give me a jolt and start a new pattern. Sometimes it would go quite awhile...

Hi Tom, I had my diaphragm pacer surgery July 16th. I had a hard recovery as far as pain and fatigue. When the pacer was first turned on I really didn't feel anything other than some twitching neat the site. But I had my first adjustment at two weeks and it was so terribly jolting and...