Bulldog29
Active member
- Joined
- Nov 6, 2015
- Messages
- 38
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2015
- Country
- US
- State
- TX
- City
- Mansfield
Well, it looks like I'll be migrating over to the pALS forums. Went for my second EMG earlier this month (first one was in February 2016), Dr Elliott told us that they saw progression to the point of being fairly certain it's not PLS and is ALS. We talked to a social worker at UTSW and the MDA person but I honestly didn't hear anything they said. I could only think about all the important things in my kids' lives that I wouldn't be there for.
I am truly blessed to be surrounded by a loving support system. My wife's family are all very close so my sister-in-law called a "team meeting" a couple of days after my diagnosis. The only thing I asked was that we wait until after Christmas to tell the kids or anyone outside of the people in that room. The family made Christmas awesome! I think we created some great memories and a couple of new family traditions.
We finally told our kids last night; one of the hardest things I have ever had to do, of course, I still have to tell my parents which could be worse. I wasn't sure what the reaction would be but we did a lot of research on having that conversation. My son (11 yrs old) cried some and then did something he has never don-he cleaned off the dinner table! My daughter (14 yrs old) was completely stoic, no emotion, I'm not sure what I expected from her. She's so much like me it's scary, she'll bottle it all in until she has a meltdown but I'm glad she kept it together because I would have lost it if she started crying too.
Anyway, we're now trying to wrap our heads around this new reality. I have no idea where to start but I've been keeping myself so busy for the past 4 weeks I haven't had time to think about it. If anyone has any suggestions please reply, I value the experience of this group.
I am truly blessed to be surrounded by a loving support system. My wife's family are all very close so my sister-in-law called a "team meeting" a couple of days after my diagnosis. The only thing I asked was that we wait until after Christmas to tell the kids or anyone outside of the people in that room. The family made Christmas awesome! I think we created some great memories and a couple of new family traditions.
We finally told our kids last night; one of the hardest things I have ever had to do, of course, I still have to tell my parents which could be worse. I wasn't sure what the reaction would be but we did a lot of research on having that conversation. My son (11 yrs old) cried some and then did something he has never don-he cleaned off the dinner table! My daughter (14 yrs old) was completely stoic, no emotion, I'm not sure what I expected from her. She's so much like me it's scary, she'll bottle it all in until she has a meltdown but I'm glad she kept it together because I would have lost it if she started crying too.
Anyway, we're now trying to wrap our heads around this new reality. I have no idea where to start but I've been keeping myself so busy for the past 4 weeks I haven't had time to think about it. If anyone has any suggestions please reply, I value the experience of this group.