So, you have MS. You may also be a Veteran of the United States military. What kinds of benefits and resources are available to those who have served and are now living with this debilitating disease? Here we hope you’ll find our beginner’s guide helpful in your search for benefits and resources.
Having MS and navigating the world of healthcare is dangerously daunting all on its own. Throw in some confusion about VA benefits, and you have a confusion cocktail to contend with (see what I did there?).
Before we dive in, just be warned: there is a plethora of information. Take your time researching, because there are a lot of links in this blog post. Because there’s so much info to take into consideration, we will do our best to update this blog as necessary. Check back regularly for more information as we come across it.
Over this past weekend, Jim struck up a conversation with an Air Force Veteran who has MS. He was surprised to learn that MS is, in fact, not covered under the Agent Orange Act or the PACT Act. MS has not been identified as an illness associated with the substances that these Acts target.
In his conversation, and subsequent research later on, he found that many people (perhaps as high as 60% of people) were denied upgrades to their disability rating. The VA, depending on evidence, will often award up to 30%. However, sometimes specific symptoms will allow for a higher percentage; one of those being chronic fatigue, which gets a 60% rating all on its own.
Jim also states that Veterans who are prevented from working as a result of their MS may be able to receive a benefit called “Total Disability on Individual Unemployment Ability”, or TDIU. This benefit compensates Veterans at the 100 percent rating, even if their overall disability rating may be less than that. Veteran’s symptoms must be Service-Connected (SC), and already have a 60% disability rating OR have “2 or more service-connected disabilities—with at least 1 rated at 40% or more disabling and a combined rating of 70% or more”. You also must not be able to hold down a steady job that would have supported you financially. Definitely click on he link above to read more about it and see if you qualify.
The website states: “The VA provides health care services to Veterans with MS from the time of diagnosis throughout their life, whether or not they have a service-connected or non-service connected status. If an individual had symptoms of MS in the military, or within seven years after honorable discharge, he/she may be eligible for service-connected disability.”
For those who are new to the benefits game:
The website suggests filling out the VA Compensation and/or the VA Pension form available online or at his/her local medical center for starters.
But oh my goodness, that’s a lot to sift through. Here are a few things on that web page that stand out to us:
Info on Filing and Intent to File – Sounds a little silly, but you may be able to receive retroactive payments for the time between when you submitted your intent to file and when they approve your claim.
Specially Adapted Housing Grant (SAH) for those who own their home, or will own their home, this is a grant that allows adaptive modifications to your home. Can receive up to $109,986 as of 2023
Special Home Adaptation Grant (SHA) is the same as the above, but with different qualifications. Can receive up to $22,036 as of 2023
Temporary Residence Adaptation for those who are living in a temporary family member’s home that needs changes in order to meet your adaptive needs. You must meet all the qualifying criteria for one of the two grants above. The amount changes depending on which one you qualify for.
Many people with a chronic or debilitating illnesses will tell you that advocating for yourself and your needs is of utmost importance. When dealing with and anything VA-related, persistence is key.
It’s tricky, and it’s a lot to deal with on top of managing symptoms.
Keep in touch with your primary care provider and your MS social worker. They’ll be able to help you refine your case for increasing your disability rating. They’re an invaluable source of information and help in signing up for various benefits. The provide supportive counseling to assist Veterans on the physical and emotional impact that MS can have on you and you family. They’re there to be your advocate, your negotiator, your case manager, and more.
If you don’t have a social worker on your team, look for the Social Work department at your local VA, or talk to your primary care provider or MS Specialist.
Here’s a summarized list of just some benefits offered at the VA. These programs require the help of a social worker:
Veteran Directed Care – offers monetary help with personal care services and daily living. Veterans are given a budget, and can even hire their own workers.
Medical Foster Home – This is a residency that’s similar to a nursing home, except Veterans are housed in a private home. Caregiving staff is on call 24/7. The VA ensures that these staff are well trained.
Captain James “Jim” Marshall wants you all to know that if you have any questions pertaining to benefits and navigating the system, feel free to send him an email:
Marshall-James@comcast.net
As we mentioned above, this article is just a small portion of info about benefits in the VA system. We will continue to update or even create new blogs as we see fit.
Above all we sincerely thank each of our Veterans for their service. We love and appreciate you!
Don’t forget to check out our MS Peer Support Group, which meets every 2nd and 4th Tuesday of the month
UPDATE #1 – Jim let me know that Amyotrophic Lateral Sclerosis (ALS) “is a presumptive condition for veterans with 90 days or more of continuously active service in the military. Any veteran with ALS should apply for Disability Compensation.”.
He goes on the state “Looking into justifying MS [and ALS] as Service-Connected, it is not as difficult as it seems. If the Vet was exposed to Hazardous Materials, most of us come across such things even in the states, then present VA thinking has MS service-connected because ‘IT IS AS LIKELY AS NOT’ caused by the exposure.”
Here at AnCan, we like to highlight the perspectives of every person that enters our virtual “door”, so to speak. That includes religious perspectives; we are SO proud of how diverse our community is. So, as such, these views aren’t an official AnCan viewpoint.
Now that that’s out of the way, we just thought we would share a more religious perspective on a person’s cancer journey. In her blog, Stingray of Sunshine, author Dana Hendershot asks the question, “If it is truly a God blessing that my cancer was found early, then I also have to believe that God did NOT bless the person whose cancer wasn’t caught early.”
Author, and cancer survivor, Dana Hendershot, goes into depth about those words and phrases that others might deem comforting to someone going through cancer. Phrases like “God has his reasons” are the opposite of comforting for her.
CLICK HERE to read Hendershot’s blog post about her “Theological Quandary”
No matter our religious (or nonreligious) perspective, these sentiments may be felt by many in our community – regardless of which illness you may have.
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 23, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/
Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: Handcuffed by HMO, making the best of it. (bn)
Topics Discussed
Memory issues, but HMO won’t allow him darolutamide — try monotherapy abi?; tumors block TURP surgery, hoping ADT will ease surgeon’s job; AnCan pushes for better Orgovyx pricing; acupuncture and hot flashes; abi first, then enzalutamide — not the reverse; doing well on daro doublet after chemo; Orgovyx probably won’t thin the fog; mulling DEXA scan report; daro monotherapy addresses heart issue; filling the need for exercise with an e-bike; how much vitamin D?; grateful after switching to a GU oncologist; keep alert to side effects in Xgeva and Prolia; AnCan’s prostate cancer forum is back (https://ancan.org/forums); Embr Wave outdoors; landing an appointment with Oliver Sartor.
Chat Log
Harry Spila · 7:58 PM gotta go, take care everyone
AnCan – rick · 7:59 PM Happy riding!
Harry Spila · 8:00 PM 🚴
Mike Yancey – Oklahoma · 8:06 PM Gotta run
julian – houston · 8:06 PM great conversation, as always. Enjoy your Memorial Weekend!
Last month’s Under 60 Stage 3 & 4 Prostate Cancer meeting was small, intimate and produced a true gem from Down Under to benefit all AnCan’rs …
For the life of me, I forget what raised the topic … maybe a Death with Dignity discussion – but Aussie AnCan’r, Steve Cavill told us about the ICE “In Case of Emergency” Checklist Document that he and his wife Leonie, who occasionally attends our Care Partners Group, have both completed. Steve and Leonie reside in the suburbs of Melbourne and are currently heading towards mid-Winter.
This ICE Checklist takes much, if not all, the difficulty out of placing your key information in one place. Like your vital passwords to your laptop, phone or bank accounts; names of key individuals in your life and more. You know .. all that information making it possible for someone to piece your life together if you’re suddenly no longer with us.
Frankly it’s information we should all compile no matter how old. With this checklist guide at hand to march us through it, there can be few excuses. Just remember, this version of the ICE checklist was created in Oz, so it may not be fully applicable Stateside. If one of our US volunteers has time to ‘Americanize’ it, I feel sure it will be greatly appreciated – we have very few solicitors in the US and a few too many attorneys!
Here’s the checklist document in Word format ICE Document Template Now do your part …. and a BIG THANK YOU, Steve Cavill!!
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 15, 2023
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
AnCan Foundation deeply mourns our dear Board & Advisory Board Member, Moderator and Brains Trust Brother, Herb Geller. To read more click https://mailchi.mp/ancan/remembering-…
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: Controversial Death with Dignity discussion starts – and Keytruda shows up more than once at the back end … after passing Dude Wipes along the way! (rd)
Topics Discussed
Talking ‘Death with Dignity’ with AnCan Advocate; urologist refuses Provenge – get a GU med onc!; pros & cons of treating the primary; timing of RT; handling multiple QBs; Bx find no NEC; salvage RT commenced; clean up with Dude Wipes; brain fog/short term memory loss – drug and non-drug remedies; Flomax and brain fog; some Gents take just 2.5mg/daily prednisone with abi; Eligard & ukuleles; another Gent looks to pembro/Keytruda; proteomics; wean off Prolia; pembro vs chemo decision
Chat Log
Ben Nathanson sent · 5:14 PM As the End Nears: Dying with Metastatic Cancer https://join.compassionandchoices.org/a/end-nears-dying-metastatic-cancer Compassion & Choices https://www.compassionandchoices.org States where medical aid in dying is authorized, and dates when it took effect: Oregon 10/27/1997 Washington 3/5/2009 Montana 12/31/2009 Vermont 5/20/2013 California 6/9/2016 Colorado 12/16/2016 Washington, D.C. 2/18/2017 Hawai‘i 1/1/2019 New Jersey 8/1/2019 Maine 9/19/2019 New Mexico 6/20/2021
Joe Comanda (Philadelphia) sent · 5:21 PM I don’t want to cause trouble, but I am troubled by the advocacy of Compassionate Choices, formerly the Hemlock Society. I would hope that men would not take that way out.
Len Sierra sent · 5:23 PM Everyone has to make that decision for themselves. No one else should make it for them.
rd sent · 5:24 PM We think it’ s each person to his own… AnCan believes everyone has a choice, Joe.
Jim B sent · 5:36 PM Hi Bob, I just had a Pluvicto treatment this morning. No side effects so far but I’m sure that dry mouth, nausea and slight fatigue will continue. How is your WBC coming along?
Joe Gallo sent · 5:47 PM Genito Urinary (GU) Oncologist Dr. Eleni Efstathiou
Peter K sent · 6:37 PM I have had 3 med oncs for over a year now. 2 up to a year ago. They are all valuable and I keep them all informed and they all have vaulable input
rd sent · 6:38 PM MDA – maybe the best cancer hospital … but not the best prostate cancer hospital
Peter K sent · 6:42 PM They are doing MRidian SBRT with View Rayt in Michigan- low toxicity in trials
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
AnCan Foundation deeply mourns our dear Board & Advisory Board Member, Moderator and Brains Trust Brother, Herb Geller. To read more click https://mailchi.mp/ancan/remembering-…
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s pick: Stay alert for morphing if your PCa acts weird – and great ACS tip if you need a hotel for medical reasons.(rd)
Topics Discussed
Diagnosed 4+5 in 2009 and still going strong; probably ain’t the abi – gotta exercise !; urinary retention; holding steadyl ; snady mouth and Sjogrens could come from Keytruda; Neulasta side effects; watch for small cell and adjust treatment; lung nodule could just be liquid; 97% continent 9 mo after surgery; seeking a Center of Excellence for RT proved wise; ACS can help with hotels; HT shrinks lesions
Chat Log
Tim Valle and Jen Turner-Valle , Boulder, CO sent · 5:07 PM
It appears that prostate bed recurrence after RP + adjuvant RT is 13.3% (ok, almost 15%), after RP alone is 20.6% in the prostate bed, and after RT in-gland recurrence is 64%.
These are links for Dr. Sartor’s bio. They both have him at Tulane.
Ben Nathanson sent · 5:50 PM
If you would like to schedule an appointment to see me at Mayo, you will need to call the Medical Oncology New Registration Phone Line: 507-284-4137 Fax Line for patient records: 507-266-4973. You will need to indicate that you are a patient of mine from Tulane, and we will help coordinate your records to them. Becky and Brigitte can help with Tulane records.
eric sent · 6:23 PM Have to go, but wanted to check in. I doing well excersing everyday and coaching soccer now. I would just say to the group meditate and be active and live while you do it. Talk to you guys soon
AnCan- rick sent · 6:24 PMTx Eric – try to get by 10 minutes aftr we start so we can check in with you
Very good info. I stayed at Extended Stay America a couple of weeks agp and it cost me $200.00 for one night. When I go back I will ask for the discount. Thank you again for the info.
TonyFig sent · 7:12 PM
Many of the cancer treatment centers have social workers. If you contact the social workers, they usually have arrangements with local hotels for free rooms or discounts, plus gas cards.
Robert Glover (Colorado) sent · 7:12 PM
(contact rd@ancan.org) for Rob Glover’s email re. info on America Cancer society hotel reservation info.
