Hi to all....wow, never expected this!

[ruthiep]

I've been shadowing so to speak for the last several weeks and just now have the courage to post! I have to say, you are all an amazing bunch of folks and I feel so very fortunate and blessed to have found this site! My husband was diagnosed with ALS January 2011, just a few days before our 25th anniversary! With his typical humor, my hubby told me "happy early anniversary"! Though not shocked by the diagnosis, I still feel like I've been kicked in the teeth! Scott's 49 and I'm 45. Our daughters are 23 and 24 and we have two grandsons who (in my eyes) are the most beautiful creatures God ever created. I'm sure all other grandparents in this group are going "yeah, whatever...". Nonetheless, not to whine, but this entire situation stinks and I'm so furious I can't see straight. While Scott had symptoms for a year plus....I guess I pulled the "ostrich with its' head in the sand trick as long as possible". While not trying not to coddle Scott too much, the tripping and falling truly scare me to death. The fasciculations in his arms, legs and chest (stomach) are now so pronounced that I feel them at night sleeping next to him! Is this normal? I guess my biggest question is----WHAT'S NEXT? I'm trying to remember that this is just a "bump in the road" in our lives (well, it's kinda more like Mount Everest in the middle of our highway....) but that God has a plan, whether I like it or understand it. Thanks for tolerating my vent and I'd truly appreciate all insight and words of wisdom ya'll have to offer!

 

[trfogey]

Welcome to our little club -- where nobody really wants to be here, but Fate thought differently and pushed us all together. Sort of like your homeroom in high school, except there are only 3 letters in the alphabet -- A, L, and S. (and maybe P, for the PLSers here)

Nonetheless, not to whine, but this entire situation stinks and I'm so furious I can't see straight.

Yep, know it well.

While Scott had symptoms for a year plus....I guess I pulled the "ostrich with its' head in the sand trick as long as possible". While not trying not to coddle Scott too much, the tripping and falling truly scare me to death. The fasciculations in his arms, legs and chest (stomach) are now so pronounced that I feel them at night sleeping next to him! Is this normal? I guess my biggest question is----WHAT'S NEXT?

Sounds ALS normal to me. As to what's next, could be a lot of things. Probably more of the same and some new things in new places. The best thing to do is take them as they come, one day at a time, and ask questions here when you have them. Mostly, don't borrow tomorrow's troubles today.

I'm trying to remember that this is just a "bump in the road" in our lives (well, it's kinda more like Mount Everest in the middle of our highway....) but that God has a plan, whether I like it or understand it.

Some here will agree with that statement about God's plan and some won't, but we all know where you are now -- trying to find a way over, under, around or through that doggone mountain. Come join us on the journey.

 

[tomby]

So sorry Ruthie. I'm the same age as your husband. People here know what you are going through

 

[Zaphoon]

Ruthie,

I'm very sorry you have reason to search us out. Your husband's sense of humor can be a remarkable coping tool for all concerned.

Welcome to our little world!

 

[joni51]

Ruthie very sorry about your husband. My husband was diagnosed in October. His started out with his speech, and swallowing. His walking has not been affected as of yet. I know what you mean about watching the fasculations. Makes me want to just slap them out of his body, and yes I feel them when I am against him...constant reminder. Just remember you are not alone here. We all are right here with you