Npoo1

[joni51]

The lady called me today to tell me Bruce would not qualify for the trial. Be warned she said they would not except anyone on feeding tube, BiPap or breathing levels below 70. I cried.. This sucks!

 

[Ms. Pie]

Yes it does Sweets. So, onward we go. Big Hugs Joni Pie. xoxoxo!

 

[VoiceforLinda]

Joni,
So sorry Bruce didn't qualify and I understand how heartbreaking it is. I didn't qualify either and it is so very hard to accept. I have heard such good things about it and I read it is especially helpful for bulbar onset. I just pray it will become available to all of us PALS soon.
Blessings,
Linda

 

[notgivnup]

Oh Joni............so so sorry, Big ((HUGS)).

 

[HelenL]

Joni, so sorry to hear that he didn't get into the trial... let's just pray that these things work and get to us soon!

I met with my neuro last night, he made a house call after putting in a full day at Mass General, to go over my EMG I recently had. (The EMG showed progression in my arms, which sucks, but basically we knew that already.) But he told me about a conference he attended in NY last week (I think), where over 150 neuros were at, all for ALS only. He really feels that a breakthrough is coming soon... let's just pray soon enough for us all. Sending you a hug...

 

[susanf]

I'm sorry Joni. That really stinks.

 

[joni51]

I sure hope something helps and is available soon. It really put Bruce and I both in a funk...Linda I am so sorry you did not qualify either. Thanks for the HUGS..Love Yall!

 

[Ladyinn]

Darn, darn, darn!

 

[Alyoop]

So sorry, it certainly does suck. Helen how sweet of your neurologist to visit and how exciting that a breakthrough may be imminent. It's about time.
Join. Left you a message on Skype. Open skype ( I think you already have it turned on) and my message will be there. I wrote it before I read this.

Hugs to Linda, Joni and Bruce

 

[joni51]

Glad to talk to you Aly... made me smile

 

[sadiemae]

Joni, my husband has been a funk for months about not getting into the trial. We did the Phase 1, and were told we would be able to do Phase 2. He is really angry about it.

 

[joni51]

I'm sorry Lori, Bruce and I both were so disappointed. He hasn't even tried to smile today.

 

[Alyoop]

Lori, that's awful. I would be mad too.
Joni,, hearing that amazing accent made me smile as well. Seeing your face and wee Bama was great too. Please don't be mad at the cute wee doggy. I am sure he didn't mean it
Best wishes and prayers for you both tomorrow
Love ya

 

[LizT]

Certainly does suck, Joni.
As much as I love the fact that at least there are drug trials happening for lots of PALS all over the place, I am a little salty about it all.
Arent there ANY trials for those who are already completely paralyzed and on a vent? Any at all? Its so hard to have hope when you realize that your PALS wont be helped by any big break-thrus. Like I said- VERY glad that others may be getting helped and hopfully eventually will be cured. Just wish my PALS could be a part of that.

 

[sadiemae]

Liz, most phase 2 or phase 3 trials require that in order to be eligible, you have to have had symptoms for less than 2 or 3 yrs, which really sucks. For phase 1 safety trials, they take whoever they can get.