Update for those who care...I'm back from my Mom's ALS appt.

[bicentennial_baby]

I'm not really in the correct headspace to discuss it in detail, b/c I don't feel like crying again right now.

It could have been better, it could have been worse. Much to be done. (Like I need more to do right this second, ugh!)

It was nice to spend some time with my Mom though. :)

And that's all for now. Maybe I'll be able to post about it in more detail tomorrow. Maybe not. :shrug:

:grouphug:

[Parche]

1. Big Hug Needed

:hug: :hug: :hug: :hug:

Moms are special

:hug: :hug:

:hi:

[bicentennial_baby]

2. Thank you...hugs are most appreciated

:hug:

:hi:

[LeftyMom]

3. Hey, lmk if you need to talk.

My Mom's got totally different issues (hep c, fibro, skeletal issues, two kinds of arthritis, repeated blood clots leading to pulmonary embolism...) but I can definitely relate.

:hug:

[bicentennial_baby]

5. Thanks babe...

I'm trying to keep it together. Whew! This is a test. I'm going to see a counselor on Monday.

:hug: I'll let you know.

[miss_american_pie]

4. ...

:hug:

[Sanity Claws]

6. Has she been diagnosed?

Or was it an apptmt. to see whether that is a correct diagnosis?
In either event, it sounds like it's a very serious situation. Hugs to you, dear. :hug:

[bicentennial_baby]

8. Yes, last summer...

This was an appt with her ALS team (Neurologist, Pulmonary specialist, Social Worker from MDA). Her condition has worsened since last visit. My Dad has MS, he's been in the hospital for almost 3 months now. Things are not good. I'm at a loss for words really.

Thank you. :)

[GreenPartyVoter]

7. *hugs and a smile*

[bicentennial_baby]

9. Kick for anyone who missed it.

:)

[bixente]

10. ...

As you said in the opening line of the opening post, I won't press you, instead I'll just give you my best wishes for you and your family, and also that you're in my thoughts.

[bicentennial_baby]

13. Eh.I'm willing to discuss it a little more..

She needs a talking typewriter, a la Stephen Hawking, which costs thousands of $$, so I need to get her on Medicare asap. Medicare has an exception for ALS patients, fast track, etc. Also, we need to get her a "cough machine", which is a mask that she will wear 3-4 times a day to inflate/deflate her lungs, keep them in shape, and expel sputum. We're switching up 'scripts, to hopefully lessen her saliva production, since she can't swallow it.

The bad part was when we talked about the Bipap (breathing device), feeding tubes, ventilators, and hospice. We're not there yet, and it made my Mommy cry, and I thought it was kinda unnecessary to bring that up today after her 3.5 hr appt. She's not dead yet! Nowhere near! She still drives, writes letters, cooks, etc. I was pissed about that part of the appt. x(

[bixente]

23. I don't know what to say

I'm sorry. I wish I had the right words, but I feel myself bereft.

[bicentennial_baby]

24. That's ok friend...I am too

:hug: Just thank you for listening. :)

This is my test. I am strong, and I can handle this. Today was just a rough day. I live and dream my Mom's disease every day, consciously and subconsciously. I and my family will survive this, I know that. And, I am so proud of my Mom, she is so brave and I hope to be as brave as she is should I ever face a situation like this. :)

:hug:

[huskerlaw]

11. I think I've mentioned before...

that one of my mom's really good friends has ALS and was diagnosed MANY years ago.

I know what her family has gone through, and I'm sorry you're going through it now. It's an absolutely horrible disease.

If there's anything I can do, let me know!

:hug:

[bicentennial_baby]

14. Yes it's hellish, but I'm pragmatic

Today was a bad day, b/c I was forced to confront the harsh reality.

Otherwise, I know in my heart that my Mommy is dying, and I am trying to make peace with it. I just have to soldier on and help her however I can. I'm trying to keep it together. I'm more worried about my lil brother than me, by far. Sigh.

:hug: Thank you.

[Sugar Smack]

12. Hi, Bibaby. I'm sending my love

to you, and to your family. The pressure's too great for you. Don't feel you have to respond to these. Just know that we wish you well; I wish I could come hold your hand.

:hug:

[bicentennial_baby]

15. I wish you could too...I almost called you late last night...

Let's talk this weekend? :hug:

I love you :loveya:

[Sugar Smack]

18. Let's talk.

I love you, too. We're definitely due to talk. :loveya: :hug:

[fizzgig]

16. i wish i could say something to help or make you feel better

but i do have a :hug: for you and your family

[bicentennial_baby]

17. thank you...i appreciate it

:hug:

This is *really* hard...sigh.

[Steven_S]

19. Sending love and hugs and vibes..

to you and my fellow PALS. Sounds like bulbar onset. I have arms and legs onset, about 2 years now.

This site: http://www.patientslikeme.com/ may be helpful to you and your mom; it's a good source for information and support.

:hug:

[bicentennial_baby]

20. Hey! I was hoping I'd see you! Yes, it is bulbar-onset...

:hug:

She was Dx'd in July 07, progressing but not as quick as some. She still drives, walks, etc.

Can we be in touch? :)

[Steven_S]

21. Check your PM...

I will always help in any way I can. :hug:

[Pierre.Suave]

22. Babe, I have nothing to say...

SO this will have to do...

:hug:

[bicentennial_baby]

25. That's ok, there isn't much to say...

Although, after much mental processing this evening, I'm feeling much more at peace. Nothing has changed, but I have decided to change my mindset. It's the "living with ALS" vs. "Dying with ALS" opposition. I need to stay with the former. And I'm going to discuss this with her Dr and nurses soon. We need to encourage her positivity. My Momma does NOT have one foot in the grave yet, despite rumors to the contrary. There's always an upside, for now. :)

And in case anyone is wondering, I'm not delusional. I know that my Momma has a terminal illness. I'm not letting her go out like that though. Happiness and light, as much as possible. I made her laugh several times today, and I plan to continue to do so. :D

:hug:

[LeftyFingerPop]

26. ...

"It could have been better, it could have been worse".

I hear you.

Best wishes. :hug: