You are in our thoughts and prayers Linda and Lenny. May whatever is the right outcome , come your way gently and we wish you continued strength and much love, Anastasia and family.
Linda this may be a good time for you to catch up on some rest. I know you feel like you need to be at the hospital with Lenny, but you will need to be well rested when he comes home. Take care of yourself hon.
We are all praying for both of you. Especially for peace.
How are you holding up? I hope Lenny is doing better, and second thought that this is a good time to catch up on some rest. Do you have anyone to help you out with respite care? big hugs coming your way!
Linda,
Try to get some rest tonight...I am sure you need it. I am hoping and praying that he will be weened from the vent. My husband also does not wish to be vented..and it scares me that I will find myself in your same situation. THinking of you. Kelly
Joel...still trying to convince him to change his mind.
kelly-- there is a new thing comming into play here it works like a pacemaker but, is for lungs someone else here can tell you how to find it i saved it somewhere,i will look for it if no one else can find it. best of luck
One of our members had this pacemaker installed in Houston as part of an experiment. It seems to have helped him. I will see if I can tell you more about this.
Hey Al,
I received your e-mail wanting information on the pace maker. I had the pace maker put in on June 2, 2008. It was a year long study. At that time, my FVC was 80 and in August 2009, it was 69. I feel like that it has helped me. I'm not sure where I would be now if I had not had this done. I use it about 5 to 8 hours a day. I heard that the FDA did not approve the first study for ALS patients. I have heard they are trying to start another study, but not sure where it stands at this time. My wife is typing this for me as I can no longer type but a sentence or two. If anyone wants anymore information, please e-mail at [email protected] and I will give them my phone number or I can call them.