konagirl
Active member
- Joined
- Oct 16, 2015
- Messages
- 56
- Reason
- CALS
- Diagnosis
- 04/2016
- Country
- US
- State
- FLORIDA
- City
- Jacksonville
Tomorrow will mark 2 weeks since my husband received his official ALS diagnosis. I feel like I have known for a while, but it sure didn't soften the blow. All of this has seemed to happen very fast. Our first clue that something was wrong was last September, 2015, while he was wakeboarding he was not landing a lot of his tricks that he normally can do very easily. He had no pain but something was off. We thought he would need some sort of surgery and he would be fixed and back up and running again in no time at all. It was Oct 1st that we met with the neurosurgeon to go over MRI results and were told "this is nothing surgical, you need to go see a neurologist so they can rule out diseases like ALS" Cue the google searches....Cue the tears. Every day since Oct 1 has been an emotional roller coaster.
My husband (Chad) turned 37 last month and we have been married 12 years. We have an 8 year old son and our daughter turned 3 two weeks ago. Chad is VERY active, not one to ever sit around and watch TV, he is always into projects....building things and playing with his "man toys" (4wheelers, RC crap, dirtbikes, our 1940 sedan....you name it and hes good at) Above all of that though, he is an amazing husband and father. This is earth shattering pain like neither of us have ever felt before and it is only magnified every time I look at our babies. Our son knows something is wrong with Daddy and that Daddy cant do all the things with him that he could before...but he does not know the magnitude of it all or the end result. Chad was originally diagnosed with PLS in Dec and that we told our son about, and he knew there was no cure, but we have not told him about the new diagnosis. I know we need to tell him, but I keep procrastinating, I want so badly to protect him from this pain. He got A/B honor roll on his report card last week and my mother in law gave him a card with some lottery tickets in it....while he was scratching them I was teasing him and asked if he could even imagine winning 50k and what would be the first thing he would buy. He said "I would go bribe a scientist to make a medicine that can fix daddy" Cue the tears. That's the hardest part, both us being strong in front of the kids and not breaking down into tears all day....maybe it's a blessing, forces some normalcy into our day, even if its fake it feels good. Of course our 3 year old doesn't understand any of it and just runs around dancing and singing all over the house, making us laugh still. She is a blessing too.
Anyway, this is where we are today. His main problem right now is the spacticity in his legs, he is still able to walk but the distances are getting shorter and he will agree to a wheelchair if we are doing something that requires a lot of walking. He trips a lot. His hands are getting pretty bad too. It started in his left, it is the worst, he can not hold a glass of water in that hand anymore. His right is quickly catching up. Its weird though, the weakness seems to be within his fingers all though he can still move each of them independently. I really want to get him on here. Hes doing good and we remind each other daily not to let our heads get too far into the future, be thankful for what we have right now, today. He is eligible for 3 clinical trials coming up at our clinic, we are meeting with the clinic coordinator tomorrow to discuss them but I have already read through all the contracts and we both feel like the phase 1 is calling our names the loudest. Hope helps us a lot.
Thank you for listening to me. My heart breaks for all of you. None of this is fair for any of us.
~Kelly (kona is my dog, bad choice in a user names)
My husband (Chad) turned 37 last month and we have been married 12 years. We have an 8 year old son and our daughter turned 3 two weeks ago. Chad is VERY active, not one to ever sit around and watch TV, he is always into projects....building things and playing with his "man toys" (4wheelers, RC crap, dirtbikes, our 1940 sedan....you name it and hes good at) Above all of that though, he is an amazing husband and father. This is earth shattering pain like neither of us have ever felt before and it is only magnified every time I look at our babies. Our son knows something is wrong with Daddy and that Daddy cant do all the things with him that he could before...but he does not know the magnitude of it all or the end result. Chad was originally diagnosed with PLS in Dec and that we told our son about, and he knew there was no cure, but we have not told him about the new diagnosis. I know we need to tell him, but I keep procrastinating, I want so badly to protect him from this pain. He got A/B honor roll on his report card last week and my mother in law gave him a card with some lottery tickets in it....while he was scratching them I was teasing him and asked if he could even imagine winning 50k and what would be the first thing he would buy. He said "I would go bribe a scientist to make a medicine that can fix daddy" Cue the tears. That's the hardest part, both us being strong in front of the kids and not breaking down into tears all day....maybe it's a blessing, forces some normalcy into our day, even if its fake it feels good. Of course our 3 year old doesn't understand any of it and just runs around dancing and singing all over the house, making us laugh still. She is a blessing too.
Anyway, this is where we are today. His main problem right now is the spacticity in his legs, he is still able to walk but the distances are getting shorter and he will agree to a wheelchair if we are doing something that requires a lot of walking. He trips a lot. His hands are getting pretty bad too. It started in his left, it is the worst, he can not hold a glass of water in that hand anymore. His right is quickly catching up. Its weird though, the weakness seems to be within his fingers all though he can still move each of them independently. I really want to get him on here. Hes doing good and we remind each other daily not to let our heads get too far into the future, be thankful for what we have right now, today. He is eligible for 3 clinical trials coming up at our clinic, we are meeting with the clinic coordinator tomorrow to discuss them but I have already read through all the contracts and we both feel like the phase 1 is calling our names the loudest. Hope helps us a lot.
Thank you for listening to me. My heart breaks for all of you. None of this is fair for any of us.
~Kelly (kona is my dog, bad choice in a user names)