New to this forum

[KimT]

Hi Tina,

Your brother is very fortunate to have YOU on his team. Caring for a PALS should not be a one-person job. My family bailed (I have no kids, just nieces and nephews and an 81-year old brother) so anytime a family pulls together or, at least offers to help, tugs on a big heart string of mine. I'm glad you're reaching out to his wife. As your brother's needs become more, she will appreciate your willingness to help.

I live in Daytona Beach so I'm not far from Winter Haven.

Everyone here is so kind and generous with their information and time. People like Mike, Laurie, Steph and Tillie (and others) are giving the greatest gift they can by staying here and helping us. I don't know if I'd have the strength or even the desire after losing my spouse to ALS.

It does help to break up your posts into paragraphs.

We're here to help in any way we can.

 

[Tlo57]

Thank you Kim!
I'm sorry to hear that they bailed - who does that?
If there's anything that I can do for you, please let me know. I'm just a hop, skip and a jump away!

I seriously need to reformat my posts using paragraphs so that it's easier for all members to read.
Would it be more helpful if I used slightly bolder print?
Nikki was kind enough to make additional suggestions, such as not including 1,001 quotes or the entire
thread in my replies.

I really need to laugh at myself sometimes because I can be so rediculous and completely confused.

 

[Nikki J]

No bold. Your last post is perfect!

Thanks so much

 

[Tlo57]

You got it Mike. I discovered that I was including entire threads when I clicked the quote msg. for every reply.
It had to be aggravating to read lol. If you notice anything else that I can improve for the sake of our members
please let me know.
Nikki suggested paragraphs instead of blocks of words.
I'll get the hang of this, I promise.

 

[Narrowminded]

Tina - yes, caring for a PALS can be more work than an infant, but it's how I describe it to others. Easiest way for most to understand, particularly when they state they don't know how you do it.

There is no prediciting another PALS progression no matter how they start. Sure some will say bulbular is quicker, but one never knows. Then it depends upon what, if any, interventions are chosen. Yes, my Brian has been here a long time. However, I can tell you that had he not chosen to trach and vent, he would not have been here at least the last 6 of 7. For the most part, I don't count those years as progression. Yes, he has progressed during that time, but his breathing would have taken him out before he made those losses.

As to intervention, that too is an individual thing. Not something to be considered lightly, but best done before needed. At least determining what, if any you want. Those decisions can be changed, but considering them without pressure is a better way to go.

Hugs,

sue

 

[Tlo57]

I can see how including the quote can be time consuming to read. I'm following your direction Mike. Shorter reply, omit quote and paragraphs!