Bad news before Christmas

[Bulldog29]

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.

 

[Nuts]

Bulldog, I am so very sorry to read this news. Please keep in mind that everyone progresses differently, and you still may have many good years with your family. As I'm sure you've read here already, prepare for the future, but live in the present.

The sticky on anticipatory planning is excellent. You have financial and legal things to handle, but housing modification seems to be the biggest issue for many. Will you stay where you are? Do you own the home you are living in? Can you afford major modifications, and if not, are there work arounds that will suffice. You can get a lot of good information here (I'd start by using the search function and then ask specific questions).

I'm sure you've read the stickies at least once, but I'd start by reviewing them now.

Much love,
Becky

 

[scaredwifetx]

Hi Bulldog, I am so sorry for what you and your family are going through. My PALS and I live near Arlington and I work in Mansfield.
Small world huh?? If you ever need anything just let us know. I also have some equipment that Steve is no longer able to use such as a new rollater.

It is so very tough in the beginning and so much to think about. This forum is a wonderful and can answer any questions you may have.

 

[Bulldog29]

Deb-wow, it is a small world! What doctor/s does your husband see? I know UTSW is the best site locally but just wondering if you guys have travelled for anything.

I guess I never allowed myself to ever consider the "worst-case" scenario and have done very little research on ALS and what considerations we will have to make. I felt like I was actually at a point where I wasn't getting worse and learning to adapt to PLS. Having had symptoms going back to early 2013, I held on to the hope that it wouldn't "turn" towards ALS.

 

[lgelb]

Sorry to hear about the revised dx, Bulldog. Sounds like you have a strong family and that will be a great help. The future isn't written and everything your kids do while you're still around can be, as far they're concerned, the most important things they have done.

As for to-do's, you might want to catch up on stickies and think about staying ahead of the equipment curve. But for now, over the holidays, just be with your family.

Best,
Laurie

 

[scaredwifetx]

Hi Bulldog,

We go to Texas Neurology. Good clinic there and pretty good doctors. We dont travel to other places. UTSW is good but they had a long wait to get in.

If you ever need advice key us know. We love near by and we would be more than willing to help. We are all in this together.

 

[ShiftKicker]

Sorry to hear your news, Bulldog. I'm wishing you a very slow progression.

Fiona