coping
Thanks for asking. It would take too long to tell you everything, but we are doing OK. My oldest son and his wife and daughter live with me, which helps with many things, but is hard on them.
I guess one of the reasons I came looking for this group is for some new help and answers. Gerald was diagnosed in summer of 2002. He did fairly well for about two years, but with ALS and FTD, I finally had to make the decision to make him quit work in 2004 (he was in a safety-related field). His employer would not lift his load and I was afraid that the pressure of his job, (plus the safety concerns), would cause the ALS to progress quickly.
Basically he still did well until about October of 2005 when he really started to go downhill. He had already lost the ability to communicate, but in about 6 months time, he also lost the ability to move on his own. A emergency room doctor in spring of 2006 told us that we could expect him to make our younger son's graduation (May 2006), but no way would he make our daughter's wedding (12/06). To make a long story short, not only did he make the graduation, he also made the wedding. Now, a year and a half later, he seems to be about the same as he was in 12/06. He does not have a PEG (his choice before he lost the ability to communicate), but still can swallow and has actually gained weight.
He is contracted and we go to the Rehabilitation Institute of Chicago tomorrow to find out about botox treatments for the contractures. I guess that's where one of my concerns right now. I haven't checked any threads on this yet, but was wondering about what to expect.
Sorry--this is long. I appreciate any help all of you can give. Seems like there are a lot of caring people on the site.
swi71