The best daddy in the world has ALS

[egbmomma]

My dad was diagnosed in June, 2013. His symptoms seem to be progressing so quickly. I am trying so hard to coordinate from another state his care and benefits. We have applied for VA benefits, but they are sending him to a PCP 1 1/2 hrs away! It all seems so crazy. I have been reading these threads for months, and it seems like nothing is progressing in terms of getting him any help. He has attended the ALS/MDA Clinic in Little Rock, and I live near Dallas. I am wondering if anyone can speak specifically to LR or Dallas clinics, recommendations, etc. Also, any assistance with the VA or tips. I can contact the PVA rep, another rep for Hot Springs, and the VA directly. I would love to communicate with any others in my parents area or in DFW, trying to decide where we should all ultimately be. I know all the decisions are up to him, but I want as much knowledge as I can going into our discussions. Thanks so much!

 

[Jwh1]

I am so sorry to here about your fathers situation. If your father is a veteran you need to contact a veterans group. Contact the als association, they will be able to help point you in the right direction. All veterans who served on active duty are automatically considered service connected retroactive to the date you file the claim. One of the veterans organization will be able to fast track the claim for your father. It is crucial you contact them as soon as possible, there is wealth of benefits that will be afforded him.

Sorry your family has to deal with this, and I wish you and your family all the best.

 

[egbmomma]

We have applied for the VA Benefits, but they have scheduled him with a PCP 1.5 hrs from his house and say it will be months before he can see someone in his town. I have contacted the Paralyzed Veterans Advocate who says he needs paperwork from ALS clinic. The ALS Clinic says we need to contact medical records to get this information to him. All hoops over and over it seems. I would love for him to start getting his benefits so we can move forward with his care, getting the house safe for him, and keeping his stress level down. It just doesn't seem like much is happening, and that is where I am getting frustrated.
I was wondering if anyone here had experience with the ALS clinic in Little Rock or Dallas and if so, if they would be willing to share their reviews of those clinics. It would be great to hear from a veteran who has gone through the process to see if they have any tips. My parents are considering moving here and I wanted to know about both clinics.
I understand the benefits and that ALS is considered service related. I understand the time constraints of this disease. I just feel like we are banging our head against the wall, and I just want someone to help my dad. So this can be as easy as possible for him. The disease itself if bad enough, just wish he could get his benefits lined up.

 

[Jwh1]

I understand your frustration, I am a veteran in the process of being diagnosed. I am dealing with the va in south Texas, where they do not have very good facilities, I currently have to drive 2 1/2 hours to see any real doctors. I do not know what the facilities are like in the Dallas area. As far as the va, it is a government facility and therefore we have to endure the government bureaucracy. But at least there is an avenue for veterans to get real benefits and help with the high costs that are sure to be coming your families way. So as frustrated as you are remember all the people that are dealing with this horrible disease with little or no help. But the va will not do much until they receive an official diagnosis. ( by their standard ). I am sorry I can't help you with your frustration but you are going to need some patience. Once again I am so sorry that your family or any family for that matter has deal with such a devastating disease. Please let me know if there is anything I can do for your family in this awful time. Jeff

 

[pearshoot]

I understand you have made the actual application for benefits to his local va service office. has he had dealings with va in past? if not get to closest va clinic with copy of dd-214 get enrolled in system and id card. yes it takes time but the benefits are retro-active to date of application. get a copy of all his current medical records that indicate als. make copies and forward a copy to va service office and a copy to pva service office so they can start building your medical file. they will continue to ask for this or that. don't get discouraged for when its approved you will get all your back pay in lump some. once approved things get much better. it took me 11 months to get approve. KEEP LEANING FORWARD IN FOX HOLE, HEAD DOWN AND POWDER HORN DRY. USA-RET MAY 1973