Recent content by lpcarr

My husband Larry passed away from ALS on December 20. I am selling our 2006 Buick Terrazz Van with the Braun Conversion. Burgundy in color, body good no rust or dents. 73,000 miles, XM radio, heated seats, remote start. Door opens automatically from the side and ramp comes down so that power...

Oh Punkie, those who have already posted have stated it so eloquently. You your hubby and God will know when the time is right; It sounds like you all have been such brave warriors. None of us know what we will do until the time comes for each of us. Yours is so heartbreaking. Know that we...

Hi Randy, saw your post about the trial. So glad you got in. Larry didn't meet the SVC. His was 59% can you believe it??? Had to be above 60% I feel this trial promising for the muscle strength. Hope it works for you. Are you still walking? Larry in a pwc now. Voice and swallowing still...

we haave an appt at IU med center in Indianapolis to get my husband enrolled tomorrow. I will let everyone know how it goes. I think he will meet thre criteria.

Just got our results on the Ceftriaxone trial That my hubby participated in. He was on the placebo. that was what we suspected. Cytokinitcs trial starting in Jan in Indy. We are planning to jump on that one as soon as we can get an appt.

Hi Jen, thanks for all the traveling info. I will try to get it all under control before we leave. so much to think about. I will definitely do the facebook thing. I see all this talk about how the forum has changed. Guess I haven't been on enough to understand what happened. Can you...

We just got our van today. Found it on ebay. Happened to be only 2 hours away so we went and looked at it first. We got a 2006 buick Terriaz with the Braun conversion. Paid 20,000. think we got a good deal. They are expensive, even older ones. We went out tonight for a couple of hours...

Hi Sye, you sound like my hubby. He can transfer and thats about it also. We just got our pwc and are in the process of looking for a used van. they aren't cheap are they!!! Let me know how your trip goes. We are ready to venture out as soon as we get a van. We live in Indiana. Have a...

all kidding aside....I would be interested as to how many pals worked on a farm or around cows in particular.

Hi nomore, Going to Mayo is a good idea. A good second opinion from a good clinic like Mayo will give you peace of mind. That is what we did also. They still ran their own battery of tests, but it still came back ALS. I ditto notme's post. We also are trying to sell my husbands business...

We want to jump on this one. I think my husband would meet the criteria, but not sure. I have emailed our clinic in Indianapolis in the hopes that maybe it will be handled there. Sure looks promising to us.

I agree with dbach. I haven't read any such messages either and I read the new threads about everyday, just don't post much. Im in the dark. Pam

guess alot of us don't know whats going on or what happened

good luck to you dear friend who I don't even know. It has crossed my mind more than once that you may start staying away from this sad place. All the best to you. You have given us more than you will ever know. Go forward and be happy. Check in once in a while, we truly care. I will think...

Hi Pear, lp carr here. Hope you are hanging in there. Still no word on a new trial for Larry. Don't go to neuro till November. Hope to get news on the ck357. I would sure like for him to be able to try it. Hope you are well. Sloooooow progressing. Hugs to you....Pam