Mda

[Geo]

Whatever Happened to Compassion and Understanding ,to give someone a Hug or a nice pat of Compassion on the back . My Good Neuro had this but unfortunately i have to be here in a warmer Climate .
He would give me a Pat on the back and say" Im sorry you have this, but we'll try and help you " That doesnt take a whole lot and it makes the patient feel alot better knowing someone does care . I think they use to call this Bedside Manner . Geo

 

[Al]

I think yhey quit teaching that in medical school and replaced it with Big Bucks 101. Get em in Get em out make more money.
AL.

 

[Geo]

Yes Sir I Beleive your right. Shame though because juist a little of that stuff goes a long way to making us feel reassrued we have found a Doctor that cares about us and not our Wallet .Geo

 

[Judith]

Thank you all for your imput. When I went to UCLA for a second diagnosed opinion in 2006, someone from MDA did come in a talk to me. She wrote down some information. When I emailed (I am speech impaired due to PLS) MDA and told them this, they said they have no record of me and that PLS was not on their neuromuscular list of diseases. I sent emails to different email addresses at MDA and asked them to check to see if what I was told is true or if I was misinformed and no one has responded.
I also sent three emails(different addresses) to ALSA about assistance in funding and no response from them either.
I am not going to give up. I will hammer them again, until I get someone to answer me.

 

[Geo]

Judy As ive said before Get your Doctor to sign you up . The lady that talked to you ,what did she say ?
I dont think they fund things but they do have wheelchairs etc . But get your doc. to sign you up . Your Neuro . Geo

 

[Judith]

Thanks Geo,
I will email my neuro.

 

[Geo]

If your not on SS Disability get down there and get started . if you have Paid into SS you should have something coming ,but you'll need your doctor records and his or her diagnoses of Probable PLS or ALS
they go by his or her recommendation . Geo

 

[Geo]

Your Very Welcome Geo

 

[Judith]

Thanks.
I applied for ss disability after I got the diagnosed of PLS in 2006. I was accepted. I am eligible for Medicare this June.

 

[Judith]

MDA no help in funding assistance

Well, I contacted my Neuro. She called MDA and they told her they won't assist in funding for an AAC device because PLS isn't on their list of diseases. They told her I should contact ALSA. Well, I emailed 3 different people at ALSA twice each and not one of them has responded. I did find an email for their AAC coordinator and emailed him today re: funding assistance. We'll see what happens.

I am looking at getting a SGD. Does anyone out there have a hand held device that they really like? I am ambulatory. The bulbar area is all that is affected so far.

 

[Whitsend]

What's an SGD?

 

[Judith]

It is a Speech Generating Device. (SGD)

 

[Whitsend]

Thanks! Appreciate the info.