Veteran's with ALS - Questions

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ecutchins

Active member
Joined
Sep 11, 2013
Messages
33
Reason
PALS
Diagnosis
11/2013
Country
US
State
Minnesota (MN)
City
Fridley
I've recently been diagnosed with ALS and I'm a veteran. I'm wondering what other Vet's have experienced with the VA. I'm working with a rep from PVA and she seems very positive and thinks I'll get my first disability check in February.

I've also learned that the local VA Hospital has an ALS Clinic.

What have you experienced? Any pointers.
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
We have had an excellent experience with the VA, as far as getting equipment and compensation. I do like the fact that they work as a team in the VA with OT, Respiratory, PT, Speech therapy, psychology, etc. But we have not had the best experience when he has had to stay in the hospital. I am a nurse, so a quite particular about things, and just found too many nurses being lazy. I stayed with him the entire day, so that I could be present when each discipline visited him, but also to make sure that he got prompt care. I am aware that often nurses have very heavy patient loads, but this was not the case.
That being said, I don't know where we would be with out the financial assistance that we get, and the equipment that they get for him is top of the line. Tons of paper work, and many phone calls at times, just be a squeaky wheel.
 

BK2011

Distinguished member
Joined
Aug 2, 2011
Messages
199
Reason
PALS
Diagnosis
06/2011
Country
US
State
Florida
City
Clearwater
VA has been terrific to me. Got my paperwork done much quicker than I expected and started my disability pay. I started out at 30% but shortly after I entered the system, it was changed to presume 100% and they caught up without a hitch. I got checked into the medical system and I've gotten absolutely great treatment from the VA personnel ever since. They are not as "UP" on ALS as the ALS clinic I started out with at the University of Miami but they do listen and go out off their way to get me what I ask for. VA did figure out my breathing problem, I attributed to ALS, was actually a heart valve problem and they shipped me down to the VA in Miami for a new valve. They felt the valve would have killed me before the ALS so they changed it. In patient care, Doctors, nurses, and aids were all fantastic.

Bill
 

frankb

Senior member
Joined
Jun 8, 2011
Messages
578
Reason
PALS
Diagnosis
10/2010
Country
US
State
Georgia
City
Sandy Springs
Vets, prior to 2012, had to jump through hoops for their ALS disability to be upgraded from 30% disabled. It is my understanding now that 100% disability is a given when there is a confirmed ALS diagnosis. I have been very pleased with care received from the VA, including their drug prescription program. Unfortunately, my local VA Medical Center doesn't have an ALS clinic. Another shortfall I have experienced is the long wait time for an appointment. That being said, God Bless VA For Being There ! ! I am still mobile but would like to have my house evaluated to see if it can be adapted for wheel chair use since it is two story with bedrooms upstairs. However, the VA position is that evaluation will not be made until I am unable to use my hands or feet. Anyone out there having a different experience?
 

Allen

New member
Joined
Oct 13, 2013
Messages
6
Reason
PALS
Diagnosis
10/2012
Country
US
State
IN
City
La Porte
I'm still walking but they were out here last Tuesday to measure the house, doorways, check for ramps. I'm scheduled to go next Feb. & they will have me drive a couple of the chairs-scooter? to see what works for me. I was told they want to do everything proactive so I don't have to wait when I really need it.
 

BK2011

Distinguished member
Joined
Aug 2, 2011
Messages
199
Reason
PALS
Diagnosis
06/2011
Country
US
State
Florida
City
Clearwater
That sounds great, My VA isn't as proactive. Since yours is, I'd recommend you download form 21-4502 "Application for automobile or other conveyance and adaptive equipment.". Once that's approved you can get a grant for up to $19,817 toward a mini-van. That is a one time only grant. The VA will also cover the cost of the conversion required to make it a wheel chair van. Take the approved form to a local mobility van shop and work out what you need to get. On a new van, say a Dodge Caravan you might pick a vehicle worth $55K, $30K for the chassis and $25K for the conversion. VA grants you $19,817 plus covers conversion of $25K. That means you have to cover roughly $12K plus tax, tags, and fees out of pocket. Depending on your budget, you might want to find a shop that deals with used vehicles with new conversions; a used vehicle purchased from someone like Enterprise rental, then converted. Going this route can minimize out of pocket investment. The conversion expense can be requested again after two years. Good luck.

BK
 

skikaz

Active member
Joined
Feb 3, 2013
Messages
31
Reason
PALS
Diagnosis
01/2013
Country
US
State
NC
City
Charlotte
My PVA handled my VA claim, I just filled out the forms he sent me then emailed them back to him. At first I was seeing civilian doctors using my work insurance. Then while at the local ALS Clinic getting diagnosed with ALS the social worker got the VA and Social Security Disability paperwork started and contacted the PVA rep for me. Even now the VA doctors tell me to keep going to the ALS clinic
 

skikaz

Active member
Joined
Feb 3, 2013
Messages
31
Reason
PALS
Diagnosis
01/2013
Country
US
State
NC
City
Charlotte
The local ALS is great to go to because of the loaners they might have available to loan you. They loaned me a QUANTUM power wheelchair, Hoyer Lift and sling, folding ramp, and other smaller items. So I had these for over 5 months before I received the equipment from the VA. They gave me the choice of a QUANTUM or PERMOBIL M300. The M300 felt more comfortable so I got that one. Got them to give me a tray for eating on. Try to get side pads and a cup holder too. The head doctor at my clinic was a doctor at the Salisbury VA so he knows about all the VA RED TAPE. I did make one mistake, don't let the VA doctors do the feeding tube surgery because they don't have the experience. I picked the CHRYSLER TOWN AND COUNTRY and love it. The driver and right front seat are removable so I get to sit up front and enjoy the ride.
 

jellis86

Distinguished member
Joined
Jun 22, 2012
Messages
254
Reason
PALS
Diagnosis
02/2013
Country
US
State
WI
City
Eau Claire
I go to the VA ALS clinic in Minneapolis...they are wonderful and are always trying to keep one or two steps ahead of my progression.
Don't hesitate to ask for anything, they will supply it.

If you have any direct questions you can message me.
 

True grit

New member
Joined
Dec 27, 2013
Messages
6
Reason
CALS
Diagnosis
11/2010
Country
US
State
Tx
City
Granbury
My husband is an ALS patient @ the Dallas VA Hospital and we have
nothing but great remarks to say about his care at the VA. It took lots
of time & paper work to get started but I was very persist &
became his advocate. We travel 2 hrs to
attend the clinic but it is well worth it. The key is to be persistent,
well organized with all forms and paperwork. It has been a blessing!
 

yutopia

New member
Joined
Aug 18, 2011
Messages
7
Reason
CALS
Diagnosis
08/2011
Country
US
State
PA
City
Pittsburgh
Late to the game here, but my husband is also a vet. The benefit set is quite good. You can also get a specially adapted housing grant (SAH) and the VA will do wheelchair adaptations to your house up to $62,000, although it takes over a year to find out if you are approved or not. We were denied at first for all grants, including vehicle, because my husband could still walk around our house. I made as many calls as I could, including one to the Senatorial Committee on Veteran's Affairs, and they reversed their decision. You have to use your HISA grant first (which I think is for $5000 or $6000 and you have to get three quotes from contractors). A bathroom remodel is perfect for HISA. Your Prosthetics Department will know about it. A lot of paperwork, and maybe some phone calls from your local elected officials, will speed the process if you apply for SAH. We have had to wait quite a while for some things, but getting equipment from the ALSA loaner closet while we wait has been a good solution. I just wish they had more answers as to why veterans are so much more likely to get ALS. My husband is 30 and has no family history of ALS.

Good luck and keep ahead of the paperwork, and follow up with your VA contacts regularly to make sure you stay in the loop on equipment and services. If going to the VA for primary care is difficult, you can have home-based primary care come to your house (or at least in Pittsburgh we were able to set it up). Our social worker at the VA has been proactive in looking for grants and services to help us. There is an adult daycare we could use at the VA near us and I have "respite" hours biweekly that are covered by a local agency. Aide and attendance is really good unless you have to pay someone for care around the clock-- but they say it is not intended for independent living, just to supplement in-home family care. In addition to A&A I believe our VA will pay for an in-home nurse for up to three hours per day to help with bathing, although we do not use that yet.

There is also an insurance that will cover your mortgage up to $200,000. Not sure if the house insured has to be on a VA backed mortgage.

I also want to add that my husband was just able to get a diaphragm pacemaker installed, but it was done through a local hospital as an out-of-VA procedure and the VA paid for it. I found that amazing.

Our VA just got an ALS clinic and it is so much better than seeing all of the doctors separately. People really care at the VA but it can be easy to get lost in paperwork so try to stay on top of things, you can do it. My heart goes out to you with your recent diagnosis. It was really hard for us at first but with time it has gotten easier dealing with the diagnosis. Emotional support is very important and the VA will have counseling available. I recommend trying it even if you don't think you need it, if you don't like it you can always just check it out once and go back if you feel like it might help in the future.

Wounded Warriors can also help and they have counseling available for your family too and their own benefits counselor. Good luck!
 

Allen

New member
Joined
Oct 13, 2013
Messages
6
Reason
PALS
Diagnosis
10/2012
Country
US
State
IN
City
La Porte
The VA sent me the forms for the van but loaned me a 3 wheeler for the interm, to bad it doesn't fit anything I drive so may have to make a purschase out of pocked. This one just adds a carrier in a reese type hitch until the van is approved.
2nd question I'm scheduled for a Cpmpensation & Pension appt. what actually goes on there, what are they looking for do I need to take documentation. I will be going to every Dr. assigned to me that day, any kind of a heads up would be helpfull. I do realize I've had many changes since Nov. & none of them for the better
 

ecutchins

Active member
Joined
Sep 11, 2013
Messages
33
Reason
PALS
Diagnosis
11/2013
Country
US
State
Minnesota (MN)
City
Fridley
Quick update. My disability claim was approved and my first check should arrive next month. I've also been approved for healthcare. I have my first appointment with the VA ALS Clinic on the 31st.

Things have gone smoothly so far. Really liked hearing everyones experiences.
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
The VA sent me the forms for the van but loaned me a 3 wheeler for the interm, to bad it doesn't fit anything I drive so may have to make a purschase out of pocked. This one just adds a carrier in a reese type hitch until the van is approved.
2nd question I'm scheduled for a Cpmpensation & Pension appt. what actually goes on there, what are they looking for do I need to take documentation. I will be going to every Dr. assigned to me that day, any kind of a heads up would be helpfull. I do realize I've had many changes since Nov. & none of them for the better

Basically there are several levels of rating which will gauge your compensation level. The reason you are seeing several doctors is that they will be part of determining this level. It is determined by the level of disability you have, in my husbands case he was unable to work, and was using a walker and manual wheelchair to ambulate. Each time he lost the use of a limb his compensation rating went up. He is now at the highest rating, requiring total care for hygiene and specialized care for ventilator and physic. Are you connected with the PVA as they are very good advocates for your rating, and grants that are available. The VA had purchased a very expensive motorized wheelchair when he was unable to walk, but then did not allow him qualifications for the mobility van. It took some ranging and PVA involvement to get that arranged.
 

Allen

New member
Joined
Oct 13, 2013
Messages
6
Reason
PALS
Diagnosis
10/2012
Country
US
State
IN
City
La Porte
They told me to call a person at the PVA, in which has been very instrumental in lining everything up. He is just so busy I hate to bother him but guess that is what I have to do.
Can't quite figure the chair & no way to carry it but on a smaller scale that me with the scooter. On a good day I can walk 15 steps or so w/a cane but can't even get my mail or shop. Scooter is in the garage being of no help ( YET ) but will when this weather warms up
Thank You & good luck w/your Hubby
 
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