Julie, there is only so much you can do. With Ray's many problems I just used to nag on and off, I bet he was glad off the off days, it was so peaceful...lol.

You and Larry have been through a lot, someties it must just break your heart.

(((hugs))) from Sue.

Julie :

I feel as a caregiver you can just take horse to water then its their choice which creates their destiny. that's what I tell kido, all I can do is tell him & provide him the opportunities to do well in his studies but then it will be his choices which will create his grades & GPA. at the end of the day I want to feel that I did my duties (karma) well then its his destiny.

Asha

Asha

Julie: we too had many fine remembrances in the area. This morning, the radio station I listen to has two DJs - normally known for their humor. But they had on survivors, first responders, 911 management teams. It was lovely. They said when they announced 12 years ago, they will never forget, they meant it.

I am sorry about Larry. Hopefully you will requalify in January. Yes, back on the nag trip. Lets call it cheerleading - cute skirts, pom poms - have some fun with it - LOL. Because none of it is any fun for either you or Larry. Seems the game plan is to give them enough to be able to manage on their own. This is, just about everyone here says their partners always work better with the professional. Our partners are with us 24/7. We are not therapists, we are partners. We have the responsibility of everything. And Bruce sure gets tired of that quickly.

Just do the best you can honey. Have Louis and Jim work with him when they are there - get you off the nag team for a bit. Debbie

Julie i am so sorry -- all the games you/we have to play just to help our loved ones survive .... it gets old.. and the criteria they use-- i have no clue ----- arghhhhhhh. nancyl

Are you able to contact medicare yourself and discuss the problems with them directly? Why is the initial therapist unable to come up with a reason for more swallowing therapy? One other thing.... estim to the neck is not like anywhere on your body, you have to know what you are doing because those muscles can close the throat. I'm not sure the new therapists who has no training in it is a safe idea.

Julie, I'm guessing but it seems as though cut backs are everywhere we look like Medicare, insurances, the VA, and the military too are cutting back on housing allowances for active duty soldiers!!

Many of them are buying homes for their families for the first time and the married soldiers can't live in the barracks with families. They get quarters on the base if they are available and that takes away their housing allowances. Otherwise they get to a new base and try to buy a house for their families to live not knowing how long they will be stationed there.

So cut backs are everywhere even my doctor got a sign on his door saying some Medicare patients may have to be let go because of government cuts.

Sany, yes, I have contacted Medicare and recieved little help. There mantra is there is a $1,900 cap on PT and speech. I was told the therapist is the one who approves more benefits. But with the speech therapist using the Experia machine, she cannot do much. They were denied payment. I am waiting to see if they come up with a word to Medicare as she said Larry had enough benefits at the time. The speech therapist at the ENT's office is the one who referred me to Experia. This is a case where the therapists kept moving us on to another therapist. One speech therapist said she recommended more therapy but the Experia therapy told me over the phone that Larry was not motivated! So maddening.

All of the speech therapists have training in using the E-Stim on Larry's throat. The therapist we went to recently has training in the E-Stim but she said not much training in swallow therapy.

Julie

This last therapists you mention that has not much training in swallow therapy. She is the one I wonder about. Being trained on e-stim is not quite the same as trained on e-stim on the swallow/neck part. If she is trained in that also, good. If not, I wouldn't let her 'try' to see if she can manage it. This can be dangerous if done wrong, since if you have a spasm in your throat, you may be unable to breathe.

I'm sure she is qualified and it may be a moot point anyway since I will not be able to get coverage.

Julie

Well I found out that the RPI facility using the Experia E Stim was paid. The referring Dr. there had to give his statement in determining it was medically necessary since Larry has gone over his cap for benefits. The therapist are to say further treatment is necessary but Medicare says that payment is not guaranteed.

Julie

Julie: good news. One thing crossed off your list and in January you reapply. Debbie