Does anyone have any experience with Receiving disability from the US Veterans Association for PSP or Parkinsonism or “Parkinson Like” diseases. With the possible new help for Blue Water Navy Veterans, Dan should be eligible for disability , with his original diagnosis of Parkinson’s. Now, with PSP, I fear it is doubtful.
Any ideas are appreciated. .
Karyn
I had to look up the legislation to find out what it is. Seems to me he would qualify unless it says only Parkinson’s. Since agent orange can cause a myriad of diseases it would be hard to exclude PSP. Have you been in touch with your Congress person or senator? Maybe one of your kids could do that.
Thanks, it appears only diseases on the “ presumable “ list are included. Parkinson’s is one of those diseases. A memo in 2016 suggested veterans with “Parkinson like symptoms” or Parkinsonism be included, but it was never added to this list. When Dan was originally diagnosed with Parkinson’s he applied. He was denied because he was not actually on Vietnam soil. Now new legislation is to go before the Senate this year which, if passed , would qualify him . Unfortunately his diagnosis has changed and is now PSP, no longer presumable. Now I believe it would be looked at on a case by case basis. Probably not in his favor.
Strangely enough, he still has many Parkinson like symptoms , just highly exaggerated: plus: skin redness and modeling, more rigidity on one side, totally incontinent, frontal lobe involvement, does not speak and sometimes has trouble getting food into his mouth, . Yet, he can still swallow and has little eye involvement ,
Thanks so much. I am just scrambling to find hope. Military disability status would just make things look a little brighter.
You are correct a Senator or Congress person may be the right way to go, especially with the new bill and new interest .
Karyn
Karyn, is this anything CurePSP could help advocate for,?
If your husband was ever 'in country" during the Vietnam war he should qualify for a multitude of benefits for medical issues that arise due to the use of Agent Orange. Now there is talk of the possible risks from the burn pits that were/are used during the Gulf War and other Mideastern areas.
Dad was under 100% VA care, in nursing home now , with his diagnosis of CBD even with it being classified as non-military related. Have you looked at applying for the Aid and Attendance benefit, it's an income based stipend paid directly to the Veteran. Dad was eventually classified as Group 4 disabled and that qualified him for Home Based Primary Care, HBCP program. It was a great help while he was here.
Just tossing out a few other VA benefits you may be able to get.
Ron
Since my husband was on an aircraft carrier he was denied. He never was actually “boots on ground”. We have however recently received Home Based Primary Care , which is wonderful, but he was denied for disability compensation and status. That classification would help us in many ways. Now new legislation is being introduced to help Navy Veterans who were within 12 nautical miles of Vietnam . Dan would qualify if the would consider Parkinsonism , or diseases that cause “Parkinson’s like symptoms “ as presumable to Agent Orange. It seems there is some questions regarding this. If your dad was in Vietnam, then CBD must not be covered . I am just trying to find some hope in dealing with this awful disease.
I am very concerned about the cost of long term care. I did not think VA would help with that. That’s a great relief. As much as I hope to keep Dan at home, the time may come when we are unable to care for him.
Thanks. Best wished to you and your dad. To see your father struggle must be heartbreaking. Our kids are devastated by this disease.
Karyn, I replied last night to your post on curepsp. I do not think the addition of Parkinsonism to the AO presumption is a dead issue, just unfortunately stalled. My husband is in the same position as BWN with psp. We also have 2 letters from our neuros making the statement of service connection. Do not know if will help. I would encourage you if have not kept original claim alive to file an intent to file a claim which will start the date for the claim and give you a yr to gather info for the claim or to give it time to be added to the list. Please message me if you want more info on my experience as I think we are dealing with the same issues.
Hi Karyn reading your post have always wondered if there were others with Parkinson’ like PSP, it seems like a lot are diagnosed with just parkinson, then later it is diagnosed PSP, right in the middle with the Veterans, my understanding is that Parkinson’s like, and bladder cancer is going to the Senate August 1st my brother was denied 2 years ago, was said if you were off shore that is brown waters, also anyone that was awarded the bronz star their ship was in enemy waters you received extra pay. i can keep you updated if you want. Nettie
Thanks. I would appreciate any information you find. The Navy Blue WAter Bill HR299 will go before the Senate Commitee for a hearing on August 1st, however there is no mention of adding diseases to the “presumable “ list, as far as I can tell. I believe the bill will help to include Navy Vets who were within 12 nautical miles of Vietnam, but were previously denied because they had never actually been “boots on ground.” I had heard that bladder cancer and Parkinsonism had been added to the list, but that’s seems to not be true. I’ve tried to search and asked Veterans attorneys and there is a lot of talk, but no action. Please let me know if you find out any different.
Thanks
Karyn
Here's an benefit you may want to pursue through the VA. It was called the Veterans Independence Program but I believe it now has a much longer name, go figure. Now that you have HBPC in place contact the social worker on the team and ask about the VIP. Dad had it while living with me at home but it doesn't follow into a nursing home. It's basically a monetary amount given to the Vet to help pay for any in-home medical care/devices the VA will not cover. The funds are managed by a third party Non-VA company and can be used for things like paying you, or anyone your husband wishes, a wage to do daily care for your husband. It's paperwork intensive to get started but for in-home care it's worth it.
Ron
PS: you can only have the VIP benefit or Medicaid in place, not both at same time. The advantage of the VIP is unlike Medicaid it doesn't require the spend down amounts nor the limitations on personal assets.
Thanks So much. Was your dads disability considered military related. I understand that those with military related are just put at the top of the list. Va has been great.
Also, do they pay for all of your dads extended care? Did they choose the nursing home etc? Thanks for taking the time to help me. Good luck and strength to you and your dad.
Karyn
Dad's CBD is considered non military related. At the present time dad is in a private nursing care facility we picked as the wait times for a state run VA home are extremely long, we applied for that in Oct 2016, accepted late March 2017 onto the waiting list... still on waiting list. He got a call for one but it was a 2 hr drive from me so it was declined.
When/if you speak with team social worker ask about VA nursing homes. They'll have a much better idea of waiting lists etc.
Ron
It was proposed at one time that my guy might be covered as he was a Vietnam era vet; but he never served in country, so instead they covered him under a "catastrophic diagnosis" exception, which did not require that the disability be service-connected in any way. It's important to know that this exception is made on a case-by-case basis according to the availability of local VA resources. We were very lucky that the VA facility here decided they had the capacity to help us. Many don't.
The key to our getting help was having a local administrator engaged with our situation; she told me about the exception and filed the appeal for me when we were initially turned down. Then the nurse administrator, who was wonderful, too, did all the work for me in getting home help, initially for four hours a week, then up to 16. (I paid privately for more.) They gave us all sorts of adaptive equipment, home health visits, in-home PT, respite care, and medical support of all kinds.
The VA was magnificent and caring and kind and supportive all the way for us. I am still amazed at the kindness we were shown, and deeply grateful. I can't imagine how I could have managed without their help.
I wish everyone could get that sort of help.
Good luck,
Sarah
Thanks so much for your reply. I did recall that your guy got VA help, but I was not sure under what program. Dan has been receiving Home based medical care for about a month Because he is considered catastrophically disabled. I agree, they are magnificent. I had no idea such an amazing program existed. We are receiving 4 hours of help, twice a week. Since Dan is considered a two person transfer, I help clean him up, dress him and move him. This takes over an hour. Therefore I’m not able to leave home much. I too will hire more care when I need to.
Was your guy in Vietnam.? I pray for all the Vets with PSP that Parkinsonism is given the same benefits as Parkinson’s.
Thanks again. I couldn’t agree more about the amazing blessing VA is. Even the knowledge that someone is there to call, gives me some peace of mind.
I hope you’re enjoying the summer and wonderful memories of the times you and your guy had together.
Karyn
How about an exercise bike?
Another stage for us in PSP 
Is PSP usually initially diagnosed as Parkinson's Disease?
Can it be PSP even if there are no instances of falls for 2 years?
US alternative to convenes?
