24 years ago this month for me! Now that I typed it, it is hard to believe that it has been that long. Whew - time does fly by. 24 Plus to go, I hope!
Quick update on my husband's ALS diagnosis.... I can see quite a difference in the muscle atrophy just in the last month or so, esp in his left hand, arm, shoulder. His legs are changing rapidly too. Climbing on a ladder or stepping up on a large step is getting more difficult. Long walks, ie going to the Nascar races, etc, are really fatiguing for him. His dexterity and fine motor skills are rapidly changing. I haven't noticed any speech issues yet. We have a long road ahead of us. I sure hope that the supplements or RX drugs we are trying kick in soon. It is really hard to imagine what he really must be feeling, though he has been more emotional about this than I have EVER seen him in all the years we have been together. A real tough cookie to swallow all the way around.
As some of you know, we are within a couple of months of moving into our "retirement" home we have been building for about a year now, and doing a lot of the work ourselves. Each little project has become a larger project because of lack of strength from both of us, ie. we installed our smoke detectors yesterday evening, which doesn't require a lot of strength by any means, but does require working with tools above your head - ceiling level. Took about 2 1/2 hours to do a job that should have taken less than an hour!
But we are plugging away at it. Sometimes it gets really frustrating, at which point we just have to laugh about it. We even get the "giggles" at some of the stupid scenarios we get ourselves into! What else ya gonna do?! (Deep down ya wanna cry though. And we both have our moments.)
Thanks for listening to me ramble.. any and all good thoughts and prayers for us would be appreciated.
p.s. My Chinese food issue I believe turned out to be a kink or twisted area in the intestine and has resolved itself once again. Thank goodness. Back on the road again......almost back to a normal diet. But dropped a few pounds that I really didn't need to lose in the meantime.
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery