Don't be STUPID like me!

[CathyP]

When Dr Donofrio (Vanderbilt in TN) "officially" diagnosed me with ALS in Jan of this year I STUPIDLY didn't immediately sign up for the ALS clinic they have there. I called Vandy today and was told I waited too long to come to clinic and would have to see Dr. D again so he could "refer" me to clinic. I say OK I would like an appt with Dr. D....Dec 26 was first available appt. I was stunned. I ended up getting to talk to Dr. D's nurse who was going to email Dr. D and see if he would see me sooner.
ANOTHER stupid thing I didn't do when first diagnosed....I just now this week been trying to sign up with my local ALS (thats a joke...I have left voicemail and emailed...still no answer) and local MDA (lady is going to send me packet of papers to fill out and send back). I STUPIDLY thought I could call either place and request something from their loan closets.....WRONG....MDA told me I would need a request for item from my doctor.
This post should probably be in WHINE & CHEESE! But, no cheese for me today

 

[SueG]

That's terrible, Cathy, I'm so sorry. We've had nothing but help from our local ALSA chapter. I hope you hear back soon- keep trying!
Sue

 

[momap53]

I think that everyone that receives and ALS Dx should be immediately assigned to a "Nurse Navigator" so that these kinds of things don't happen. One of our larger hospitals has a Nurse Navigator program for cancer patients.

 

[HelenL]

That's ridiculous Cathy, why are they putting up more hurdles for you, than helping you? Is there another ALS clinic you can go to? ((There's at least 3 in my area that I know of). I do have to say that MDA was less than helpful at first, probably because there's so my DIH people out there, they have to screen people. They've been pretty good through their clinic and groups, but most of my loaner stuff is through CCALS. Actually ALL of my loaner stuff is through CCALS except for a regular wheelchair from MDA.

On another note, Deb, that's a great idea about the "Navigator" for us ALS patients and families. I used to work at American Cancer Society when they were implementing their program (design a bunch of stuff for it)... it SO helpful at a time of stress and anxiety.

Cathy, keep on them!

 

[brooksea]

All of that is just soooo WRONG! Why would all of these places make it so difficult for a pALS? I hope you have someone that can advocate for you with each organization.

I found that with our local ALSA, getting in touch with the nurse representative was the quickest way to get things done. Maybe you should try that route.

What? So you have to prove you have ALS again at the clinic? What kind of protocol is that? I hope someone is just misinformed. It's not like you can wait around as a pALS.

As for the MDA, no comment.

 

[CathyP]

Thanks to all of you for your thoughts on this.
The MDA lady mentioned that the ALS clinic in St. Louis, MO was excellent. St. Louis is about 3 & 1/2 hours away, Vanderbilt is 2 hours away. With the price of liquid gold (gasoline) the way it is closer is better. I have been thinking about calling the MDA lady back and getting the phone # of the St. Louis clinic and see how soon I could get an appointment there. My other concern is my health insurance. I have to make sure where ever I go is a provider or my health insurance doesn't pay as well.
I guess I thought since I was approved so quickly (4 & 1/2 weeks) for SS/Disability/Medicare anything else I would do concerning ALS stuff would be fast or atleast within a reasonable time frame.
So my advice for anyone reading this that has just been diagnosed with ALS....Do what all these very smart people on this forum suggest....sign up for anything ALS related ASAP!

 

[amyst]

That makes no sense Cindy and makes me nervous. He confirmed my diagnosis last Thursday and I remember him mentioning the clinic but I didn't schedule an appt.
He wants to do another emg test and he will be doing it so i'll see him next week. I guess I better use that time with him to get in the clinic.
The main reason I didn't schedule is because I'm still planning on visiting emory before i make my mind on the best clinic for me. When I left there I was so impressed I was considering cancelling emory.

I called the middle TN ALS chapter and spoke with patty lane. She always answers the phone and sent the papers right to me. I'm having my local neuro
Fax my proof of diagnosis.
I'm sorry you're having such hard time. Hopefully his nurse gets it straightened out soon. December is just way too long.

 

[notme]

December is beyond ridiculous! Can you check with Cincinnati? Or the national ALSA agency for a place to start?

 

[caldona]

Thanks to all of you for your thoughts on this.
The MDA lady mentioned that the ALS clinic in St. Louis, MO was excellent. St. Louis is about 3 & 1/2 hours away, Vanderbilt is 2 hours away. With the price of liquid gold (gasoline) the way it is closer is better. I have been thinking about calling the MDA lady back and getting the phone # of the St. Louis clinic and see how soon I could get an appointment there. My other concern is my health insurance. I have to make sure where ever I go is a provider or my health insurance doesn't pay as well.
I guess I thought since I was approved so quickly (4 & 1/2 weeks) for SS/Disability/Medicare anything else I would do concerning ALS stuff would be fast or atleast within a reasonable time frame.
So my advice for anyone reading this that has just been diagnosed with ALS....Do what all these very smart people on this forum suggest....sign up for anything ALS related ASAP!

Washington University in St. Louis is where I go every one there has always been real nice there. I drove five hours to get there. I would go in they check my lungs and my reflexes talk a little and came home it was a waste of my time and money BUT you need them when you start getting equipment. My insurance was Medicare and Blue Cross Blue Shield and they accepted both

 

[glupavomomiche]

I am shocked! I didn't even get a choice of whether or not I was going to clinic... they handed me an appointment for the first available clinic day before I left from my consultation! And the "research nurse" stays on top of EVERYTHING going on with every single ALS patient, from diagnosis day on. What happened to you makes absolutely no sense!

And the whole not getting something from the ALSA loan closet without signing up and needing Dr. orders... that is a load of c r a p. The day after I saw Dr. Jackson the first time, I called up the A L S A in San Antonio to ask if I could borrow a powerchair for the conference I was attending there just two days later. They got one from National Seating and Moblility (they didn't currently have any available in the closet), delivered it to my hotel before the conference started, picked it up when I was done, for free, and without any argument. All I had to do was sign one little paper that says I'll take care of the equipment and give it back when I'm done. I guess I'm blessed to have a GREAT chapter... they get me things when I need them and check on me pretty often.

I'm just HORRIFIED at how you have been treated, Cathy! None of it makes any sense!

 

[joni51]

Wow Cathy that is just crazy...December! That is just wrong. I hope they can straighten this out without too much hoopla!

 

[Toto's Dorothy]

Aaaaah, so there's another post to the story. Now I understand, Cathy. Good info for others to know. And like I said August 3 is right around the corner.

 

[Miss]

Cathy -

MDA and ALS Association are not associated with each other. Do not stop calling your local ALS Association! As soon as you connect with you, and you fill out the paperwork (it takes minutes), you will be eligible for the loan closet. The MDA here does not refer people to the ALSA, and they miss out on so many resources! Sounds like your MDA has the same problem.

 

[Miss]

I posted info for you. It went to moderation. Relax about the equipment. It will be okay.