So here goes my first post. I have been feeling a tremendous amount of anxiety about making my husband's illness about me. But I find that at some point, I need to find somewhere where I can talk about it - an outlet for my emotions - which include all the stages: sadness, anger, fear, denial, etc.
I just watched the video made by the NO Saints player diagnosed with ALS in 2011. When I watch him, I wonder ... are they sure my husband has ALS? Of course, the 6 specialists we saw and the attempts to treat for MMN proved that it was. But it has such a slow progression in his case, and he is not showing the same signs that I see in what I've read on here so far (and in other literature) that I am given to pause. Yes, he's lost all if not most of the muscle mass in his left hand and is clawed. And yes, he now has lost the muscle mass in his right ankle and calf and rolls his foot when he walks. And yes, his right hand is starting to have some of the same symptoms his left hand when we first noticed a problem 5 years ago ... and ... and ... and ....
But he can still walk- albeit very carefully and not very far. He can talk without slurring. And he can breathe. Heck, he can ride his bicycle for hundreds of miles. A bucket list item of his - which he decided immediately to pursue with a passion as soon as he was diagnosed. He has ALS, can't walk two blocks, but he can ride 100 miles in a century bike race. Help me understand how this is possible? I keep asking myself if they could be wrong. This "they" of experts.
He was "officially" diagnosed this past year in June 2012. As you all can empathize, it was a very emotional day. We had suspected that he had it, been told by many practitioners that they thought he had it and then finally ... it came ... the "official" diagnosis. Followed by mounds of disability type paperwork on which was written - those words that you really don't want to hear or read, "there is nothing that can be done to prevent the fatal outcome of this disease." And then ... the second opinion ... and the third opinion and so forth.
So what do I do? My husband is an incredibly healthy 43 year old man. We have a 5 year old son. And my husband is going to die. But I keep waiting for these horrible next symptoms ... and they aren't coming ... at least not yet.
So there you go ... first post and I can't shut up. I will now. Thanks for reading, and thanks for being here for me to find today.
I just watched the video made by the NO Saints player diagnosed with ALS in 2011. When I watch him, I wonder ... are they sure my husband has ALS? Of course, the 6 specialists we saw and the attempts to treat for MMN proved that it was. But it has such a slow progression in his case, and he is not showing the same signs that I see in what I've read on here so far (and in other literature) that I am given to pause. Yes, he's lost all if not most of the muscle mass in his left hand and is clawed. And yes, he now has lost the muscle mass in his right ankle and calf and rolls his foot when he walks. And yes, his right hand is starting to have some of the same symptoms his left hand when we first noticed a problem 5 years ago ... and ... and ... and ....
But he can still walk- albeit very carefully and not very far. He can talk without slurring. And he can breathe. Heck, he can ride his bicycle for hundreds of miles. A bucket list item of his - which he decided immediately to pursue with a passion as soon as he was diagnosed. He has ALS, can't walk two blocks, but he can ride 100 miles in a century bike race. Help me understand how this is possible? I keep asking myself if they could be wrong. This "they" of experts.
He was "officially" diagnosed this past year in June 2012. As you all can empathize, it was a very emotional day. We had suspected that he had it, been told by many practitioners that they thought he had it and then finally ... it came ... the "official" diagnosis. Followed by mounds of disability type paperwork on which was written - those words that you really don't want to hear or read, "there is nothing that can be done to prevent the fatal outcome of this disease." And then ... the second opinion ... and the third opinion and so forth.
So what do I do? My husband is an incredibly healthy 43 year old man. We have a 5 year old son. And my husband is going to die. But I keep waiting for these horrible next symptoms ... and they aren't coming ... at least not yet.
So there you go ... first post and I can't shut up. I will now. Thanks for reading, and thanks for being here for me to find today.