Help make the forum even better!

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Nikki J

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Joined
Mar 22, 2012
Messages
16,385
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Hi all

I have some goals for the forum so we can make it even more helpful I hope.

The mods are going to revamp the DIHALS stickies to consolidate the points

I think a few stickies in the rest of the forum could be helpful too. Few being the important word. I am thinking

What to do when you are first diagnosed

A separate sticky on veterans benefits. There can be a note in the first diagnosed if you are a vet please also read..... That will flow better than to keep saying if you are a vet...in the first

Applying for ssdi. I am hoping someone who has gone through the process recently and has started receiving benefits can do this

And maybe something on anticipatory planning ( things to think about ahead of time)especially equipment

I do want to keep the total number down

What do people think? And who wants to volunteer? I am looking for factual and concise if you want to team up great. Maybe one person can do a draft the other add/ edit and the pass back?

Thanks all
 
Thinks it's a good idea but out of my league
 
No worries Dalvin! Thanks for the support!
 
I was thinking the same thing!
 
What Max? Same as me or same as Dalvin?
 
>I have some goals for the forum so we can make it even more helpful I hope.

all mentioned :)

>The mods are going to revamp the DIHALS stickies to consolidate the points

ideally one only ...


>I think a few stickies in the rest of the forum could be helpful too. Few being the important word. I am thinking

i agree: va, ssdi, possibly pointers to tdi, untangled, etc.

hand shaking from albuterrol
 
I'm investigating the VA topic. Seems to be dozens of sub-topics that I'll definitely need help with.
Here are three dozen topics that probably should be addressed. I'm definitely not an expert on all of these.

Basic Requirements: 90 Days Active Duty, ALS Diagnosis, DBQ
Your First Visit to the VAMC: PVA, DAV, VARO, State VA Office
Benefits Upon Diagnosis: ChampVA, Mortgage Insurance, Life Insurance, 100% P&T Compensation
As You Progress: SMC Levels of Compensation, Aid and Attendance and Housebound Compensation
Personal Equipment and Supplies: AFO, Cane, Walker, Wheelchair, PWC, ROHO, Utensils, Boost Plus, Eye-Tracking Computer
Home Equipment: Toilet, Shower, Lift, Sling, Hospital Bed,
Home Modifications: Ramps, SAH, HISA
Van and Conversion Program: Trade In
VA Payments for Non-VA Emergency Treatment (Fee Basis)
SCI and the ALS Team of Physicians
Palliative Medicine
Hospice: Community Living Center, Hospice at Home, Crisis Care, Oxygen, Morphine
Benefits Upon Death: Memorial Svc, Nat Cemetery Svc, DIC, Chapter 35 DEA
 
I don't know much yet. But I will be going through the SSDI gauntlet in about a month. I can document what I find, if no one else puts that one together by then.
 
I can tell what I did for SSDI benefits-actually it was pretty simple
 
fabulous idea Nikki

I will put my hand up for the anticipatory planning if at least one other can help me on it. I could do the first draft.

I think less stickies in number, with more information condensed may mean more of them being read.

Any CALS willing to work with me on it?

This stickie can then point to the VA one for information on how to get help with that stuff
 
Thanks everyone. I appreciate it. Of course we could write novels about each of these issues but I am looking for concise hitting the essential points. You can't possibly cover every contingency as you know
Katrina, I hope someone will step forward to partner with you.
Mike thank you
Neil thank you as well. Your experience will be fresh and perhaps someone who just got to the receiving benefits part can confirm the exact timing of when they start

What to do when first diagnosed is still up for grabs if anyone wants it!
Thanks again to everyone who posted here
 
I'm willing to work with this, too. I could work with Tillie's first draft or any other item that needed attention. Let me know.
 
Thanks Jim you and Tillie would make a good team. Maybe you guys can connect with pms?
 
Pecas thank you. Maybe you can peek at Neil's when he is done since it will be fresh in your mind?
 
I would join Neil and pecas as well. Second check just came and I'm navigating how new supplemental plan works...was charged $320 for a month of Riluzole yesterday when it's supposed to be $40. Guess I will have fun on the phone today.
 
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