VA getting started experiences

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andrewf

Active member
Joined
Nov 18, 2021
Messages
44
Reason
Lost a loved one
Diagnosis
07/2022
Country
US
State
MD
City
Rockville
Mark.... I saw you mentioned the VA. My father in law is a vet and is 78, I have been working on things on his behalf with PVA and the VA since August. I started pushing documents to PVA in mid August and he had a 100% decision letter in late September. I would be interested in sharing knowledge, and/or learning something (!), by talking with you. I do have at least one thing to maybe add, since you say your dx is MND at the moment. We are up in MD, just outside of DC.
 
Hi Andrew, Yes I too worked with the PVA and I have my 100% decision letter as well. There were about seven or so PDFs that the PVA submitted to the VA for me after I filled them in, and probably the same with your father in law. Those docs should have gotten the 100% decision as well as approving the Home upgrade and Car upgrade approvals or whatever they are called. This is what I call the first part....the second part then is getting into VA Health Care.

As far as joining VA Health Care, I once again filled in a form from the PVA (10-10EZ), and was told by the PVA that I would take it to the VA hospital, however what instead happened is that I called the number to the VA, was given another number and they took my info over the phone and they enrolled me into VA heath care (no form needed). Next I got any appointment with a PGP doctor at the VA, and after a basic physical and blood work, I was then given a referral to a VA Neurologist, and I have that scheduled for next month.

Also FYI, regarding Relyvrio.....I was told by my ALS Clinic Neurologist who I just say two weeks ago (not the VA but my other neurologist I have been seeing), is that if you are enrolled with the VA, that only the VA can prescribe Relyvrio....I asked if that had some kind of weblink that said that, but have never gotten an answer back to that yet. The ALS clinic also said, "No drug in US until approx Thanksgiving". Anyway my appointment with the VA Neurologist is the first week in Nov, so one thing I will do is ask them about prescribing the Relyvrio. Also another tidbit, is that someone mentioned that I would be initially given a referral to the VA spinal cord injury clinic, and then a neurologist. I believe at some point their spinal cord injury office is the office that issues out wheel chairs. I went to the VA clinic in Henrico, for the PGP doctor, and will go to Richmond McGuire to see the Neurologist.

Also another thing...no one at the PVA mentioned it, or anyone else, but I went ahead and created accounts at these links....it allows you to manage appointments and enroll in health insurance or whatever you need to do with the VA: VA.gov Home | Veterans Affairs and Home - My HealtheVet - My HealtheVet and Home - VA/DoD eBenefits
I think though just creating the account at VA.GOV gets you into the myhealth.va site though.

Sorry for rambling, but hopefully some of this helps. Regards, Mark
 
Rambling?! Not at all, I appreciate it greatly, that sounds exactly like what we have done. One question I had had was you had mentioned a dx of MND. They originally coded my FIL for that, but then constantly would verbally refer to it as "ALS." I basically had to tell them "time to fish or cut bait"...Code him for ALS or tell us why you think it's not! In less than one day the code was changed and I got his letter of diagnosis. I knew the VA being a bureaucracy was something that followed exact procedures, and while ALS is a MND, not all MND is ALS.
We called VA Health yesterday and enrolled him, and have an initial appointment set up for November 15. It is a phone appointment. he is seeing his Kaiser neurologist before that, I am going to get her to write up some notes on his condition I can get to the VA doc for the phone call. Because since he wont be examined then the doc will at least have something to go on.
Thank you about the new drug Relyvrio. I see it was just approved last month. I'm going to see if Kaiser will issue it to him, since I doubt he will see a VA Neuro for month at least.

My FIL is still walking, albeit very very poorly, with a walker. He is headed for a wheelchair at some point but my MIL cannot transfer him etc.

Here's where they are going to need some help, physical and also financial from the perspective of care. Their home is simply unsuitable for him to live in a wheelchair, and they want to move closer to my wife and I. We have been keeping a close eye on local homes for sale, missed out on one offer we put in. He has a VA housing grant, but that is going to take a long time to implement and (a) they dont want to use it on the house they are in now and (b) he may need to be in a wheelchair before anything can be modified. The good thing is that I am an engineer and have built 2 additions on my own home, can actually do stuff for them (and have) but not major major things like structural walls. He may need to go to an assisted living facility temporarily OR he could stay at our house where the geometry is conducive. But he will need a caretaker who can help. Not 24/7, but possibly a few times a day, perhaps a bit more. How do we find out more about what part of that VA will provide for and access it? Is it through his primary doc at VA once we have that first meeting?
Have you given thought to using the adaptive vehicle credit? Either equipment mods to an existing car, or buying one?

V/R,
Andrew
 
Hey Andrew, regarding the MND and PALS codes on this forum, I just didn't put the correct codes in, plus I wasn't formally diagnosed when I first joined this forum. I have updated my code to PALS now. For me though I was initially diagnosed as have Benign Facilitations Syndrome, but after a year or so of that, I started developing the muscle loss got the new EMG and formally diagnosed with ALS.

Regarding Relyvrio, my current Neurologist basically said that if I am using/joined the VA, there is some kind of "rule"? that says the drug Relyvrio can only be prescribed by the VA. Why this is, and where she got this info from I don't know. She told me they (my current non-VA neurologist) will start the paper work, but the VA Neurologist will need to write the script. If he is seeing Kaiser Neuro now, see what they say about being able to prescribe it to him or if only the VA can.

I have more to learn as well about the VA as far as caretaker and nursing home...not sure how that all works yet. I am the same way about the VA Housing grant, just too many hoops for me to devote myself to at the moment, and our house is pretty new 2018, and I plan on just purchasing some temp ramps for my garage entrance when needed. As far as the adaptive vehicle again this may be good for some, but I don't plan on traveling to football games and such, and when I do for ALS Clinic visits or whatever I will just use a service. For now I am still driving myself around.

I had my first VA primary care doc visit a couple of weeks ago, but I didn't ask and he didn't provide a lot of info other than just giving me the physical. Since you just enrolled him in VA Health, you or your father in law should be getting a "Veterans Health Benefits Handbook" in the mail. This may provide some answers....I need to read it again myself. I think once I get to the VA Neurologist or perhaps the spinal cord injury office at the larger VA in Richmond, I might find out more answers as these folks I think deal more with patients that are loosing functionality etc.. Thanks, Mark
 
My husband was a veteran so I've been through this process! The PVA was so helpful with all the paperwork. Also make sure to look into the VA Caregiver program. There are fantastic benefits for the primary caregiver of it is a family member.
 
I'm coming to this thread late, as I don't visit the forum often these days. You have probably already learned this, but there is (or was) a grant to adapt temporary housing (such as living with a relative) the the Vet does not own. That would help get through the transition to a new adapted home. Mark, if you are a vet, please do not buy those ramps yourself. The VA will provide them. As for the vehicle grant, depending on your progression, you could use an adapted van to drive yourself for awhile. My husband drove with hand controls (from his wheelchair) for quite some time. I was amazed at what the VA provided--sometimes with ALS and the VA, you just have to ask.
 
I think the prescription issue is if you want the VA to provide/ pay for a medication it has to be prescribed by a VA provider.
 
Thanks Nuts, I will ask about the ramps when I meet with the larger VA hospital at McGuire. As far as the prescription issue, I am just not sure, I asked the ALS Clinic Neurologist for more details on this, but haven't gotten anything back yet from her. My next appt with the VA is next week, so I will ask them about it and get the story from their point of view hopefully. BTW regarding the amx0035 aka Relyvrio. I recently asked the ALS Clinic what they thought about me taking a Rudca supplement and she said "Rudca is half of amx0035- you can take it otc until this arrives".
 
A lot of us take tudca. If you decide to do so while waiting start with 250 mg and increase weekly. While relyvrio starts you at 1000 gi issues are less likely if you work your way up. Plus my neuro though relyvrio might be better tolerated because it is medical grade tudca which we can’t get from amazon ( she has no objection to trying amazon bought tudca since that is what is available)
 
I just started TUDCA. (From Amazon) this week per my neurologist (also acetyl L-carnitine.) 1000mg once a day then next week up to twice a day. No g.I. Issues yet.
 
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