Today is Parkinson's Disease Awareness Day

[braumeister]

My response in blue:

1. We are retired...will that have any effect on his being able to be rated 100% disabled?

No, that's irrelevant.

2. Will this new diagnosis of Parkinson's make a difference in his current rating to be able to change his current rating to 100% disabled?

Most likely it will make a huge (positive) difference.

3. Since he is already being treated for this at the Veterans, might they automatically change his rating or does he need to re-file for a new rating?

Nothing is automatic. He will have to apply for the upgraded rating.

The thing to do is get expert (free) help from a veteran's service organization.

I'm a DAV member (Disabled American Veterans) and they have a magnificent network of service officers who will be happy to help document and file VA claims. Look here for starters:
https://www.dav.org/veterans/find-your-local-office/

 

[RAE]

I am very sorry to hear that you're going through this. I read recently that Parkinson's may be partly an autoimmune disease. That makes me think that a diet may have some impact. The Wahl protocol (initially created for MS) and Keto diet come to mind. You may want to explore the diet aspect in addition to taking medication, etc..

Yes, I have also read that diet could have an impact on Parkinson's. There is some information here on that: https://chriskresser.com/how-to-prevent-parkinsons-disease-with-diet-and-lifestyle/

Also, it may be worth having your DH's doctor check his blood iron level, as high iron could be a contributing factor to Parkinson's as well (this is mentioned in the above article also). Serum ferritin is a simple, inexpensive blood test, so if nothing else you can have it done to rule out excess iron as a factor.

I'm not a doctor, and I'm not trying to give medical advice here - just some things to consider, and possibly ask your doctor about.

 

[Golden sunsets]

Your post contains an amazingly important wealth of information. I just don't know how to thank you for taking the time and effort to write to help us.

Yes, DH was in Vietnam, for two years, 1967 and 1968, I believe.

He is (obviously) already in the Veteran's program - I don't know what his rating is but it's not very high, mostly because he doesn't ever complain about anything (and in this case, he should have been more forthright.)

Some questions for you:

1. We are retired...will that have any effect on his being able to be rated 100% disabled?

2. Will this new diagnosis of Parkinson's make a difference in his current rating to be able to change his current rating to 100% disabled? Or is he "stuck" at the level that he is at now? Because being rated 100% disabled would mean a lot more help would be available for him...and for us...

3. Since he is already being treated for this at the Veterans, might they automatically change his rating or does he need to re-file for a new rating?

Thank you again!!

Cindy; Braumeister beat me to it with his response. He is correct on all of his responses. You must file a new claim and as Braumeister suggested, use a Veteran's Advocate(VA). Our VA was provided by the State we live in, but that may vary by State. They will assist you in filing the claim. Let them handle it. They know what they are doing. The date the claim is filed will become an important date, regardless of how long it takes for the processing of the claim.

Dig out your DH's DD214, which will confirm his Vietnam service. This form, plus his neurologist's detailed diagnosis will trigger a rating, which for my DH was initially determined to be 90%, and at the VA advocate's immediate refiling was upped to 100% unemployment and permanent. Note that his being retired when he filed is irrelevant to the rating. Also note that because the illness is progressive, his initial rating will change if it is not initially 90-100%.

You can look up what the current VA disability payment is for a 100% rating. I think it's $3,697/mo. If your DH is determined to be 100%, you (you Cindy)will also automatically become covered for life by Champ VA for Healthcare at no cost.

If your husband collects the disability before his demise for long enough, and you survive him, you become eligible for a permanent DIC payment for your life. Because DH has been on disability for over 10 years, I will receive a payment of $1,645/mo. in 2021 dollars if I survive him.

There are other perks like free driver's license for him, reduction in real estate assessment depending on your municipality, free National and State Parks Pass. You should receive a disabled parking pass from your DOT.

Note that there are many "presumed connections" to Agent Orange. Try this link. https://www.publichealth.va.gov/exp...gent-orange/agent-orange-2020/presumptive.asp

DH has another of these conditions. His disability payment is therefore, even greater than the number I quoted above.

One last thing to note at this time though I may think of more. THIS IS NO TIME TO BE RETICENT. DON'T LEAVE ANYTHING OUT IN YOUR CLAIM. HE DESERVES EVERY BENEFIT HE IS ENTITLED TO.

Good luck. PM me with questions. I'd love to help you.

 

[Bamaman]

Parkinson's is a different illness for different people.

We have a 75 year old friend that has had it since before 1992, and he's still doing okay.

A 50 year old friend was diagnosed last year, and he's progressing through Parkinson's too fast. He's going to University of Alabama-Birmingham, an incredible hospital for every issue.

Vanderbilt Hospital has huge Parkinson's research facilities being funded by the Federal Gov't. One of their neuosurgeons is tops in his field, and he's done over 1,000 intercranial surgeries. He once did a surgery on a famous banjo player, and when he "hit the spot", the banjo player started picking his instrument like it was on fire. Only in Nashville would they let a musician take their banjo into surgery.

 

[donheff]

Cindy: lots of good advice above. As soon as I saw you mention the VA I thought Agent Orange. But others have given you good info for followup with the VA. Also, GoldebSunset’s emphasis on exercise is spot on. I have been cycling for 15 years and believe it may have slowed the onset of my symptoms. I continue to do 20 mile rides three or four days a week. Since my Dx I took LSVT Big and Loud physical therapy. Both are specific to PD - Big for motion and Loud for voice. Both are very good. I also participate in a Zoom Rock Steady Boxing class, again a set of PD specific exercises. The Davis Phinney Foundation has a free book, “Every Victory Counts,” that is an excellent resource. The Michael J Fox Foundation and the Parkinson’s Foundation are two other good resources.

 

[CindyBlue]

For a little more encouragement, I have posted 3 photos of Jim. One is with an Angel Flight patient we had flown to her appointment, One is Jim about to fly a WW2 training aircraft, and the last was at the back of the switch engine we were working on.
He is still going strong in his new home, but I really miss him.

I sure appreciate these pictures! It's very encouraging!!

 

[CindyBlue]

Yes, I have also read that diet could have an impact on Parkinson's. There is some information here on that: https://chriskresser.com/how-to-prevent-parkinsons-disease-with-diet-and-lifestyle/

Also, it may be worth having your DH's doctor check his blood iron level, as high iron could be a contributing factor to Parkinson's as well (this is mentioned in the above article also). Serum ferritin is a simple, inexpensive blood test, so if nothing else you can have it done to rule out excess iron as a factor.

I'm not a doctor, and I'm not trying to give medical advice here - just some things to consider, and possibly ask your doctor about.

We will do this! Our water is very high in iron (as in, you can see the iron in the color of the water!) We just had a new water treatment system put in, but we drank that water for years before that!

 

[CindyBlue]

Braumeister, I am so grateful for your help! I am swinging between shock and anger and sadness. We had to do all the work for getting Medicaid and the application for the Veterans home for my dad (too late, as it turned out), and lots of other things to help him when he got Alzheimer's. He died in January of this year and we finally caught a breather...and now this. It has been tough to deal with on so many levels.

The DAV costs $300 to join. That's a frankly a lot of money. I need help, but also need to be honest, and ask you if you think I will get the kind of help I'll need from the DAV. If so, we will do it. Do you know of any other organizations I can research? I'd sure appreciate your advice on this!

 

[Golden sunsets]

Braumeister, I am so grateful for your help! I am swinging between shock and anger and sadness. We had to do all the work for getting Medicaid and the application for the Veterans home for my dad (too late, as it turned out), and lots of other things to help him when he got Alzheimer's. He died in January of this year and we finally caught a breather...and now this. It has been tough to deal with on so many levels.

The DAV costs $300 to join. That's a frankly a lot of money. I need help, but also need to be honest, and ask you if you think I will get the kind of help I'll need from the DAV. If so, we will do it. Do you know of any other organizations I can research? I'd sure appreciate your advice on this!

Cindy; Try this link.

https://www.calvet.ca.gov/VetServices/Pages/County-Veteran-Service-Organization.aspx

AS I mentioned our state Department of Veteran's services provided us with an advocate. No charge. I googled the same type of agency in CA (your profile shows that you reside in CA). The link implies that they will assist you. From their webpage: "Assistance with completing applications for VA disability claims or other Veteran benefits."

A call should connect you with someone to answer questions on pursuing your claim..

 

[CindyBlue]

Cindy; Braumeister beat me to it with his response. He is correct on all of his responses. You must file a new claim and as Braumeister suggested, use a Veteran's Advocate(VA). Our VA was provided by the State we live in, but that may vary by State. They will assist you in filing the claim. Let them handle it. They know what they are doing. The date the claim is filed will become an important date, regardless of how long it takes for the processing of the claim.

Dig out your DH's DD214, which will confirm his Vietnam service. This form, plus his neurologist's detailed diagnosis will trigger a rating, which for my DH was initially determined to be 90%, and at the VA advocate's immediate refiling was upped to 100% unemployment and permanent. Note that his being retired when he filed is irrelevant to the rating. Also note that because the illness is progressive, his initial rating will change if it is not initially 90-100%.

You can look up what the current VA disability payment is for a 100% rating. I think it's $3,697/mo. If your DH is determined to be 100%, you (you Cindy)will also automatically become covered for life by Champ VA for Healthcare at no cost.

If your husband collects the disability before his demise for long enough, and you survive him, you become eligible for a permanent DIC payment for your life. Because DH has been on disability for over 10 years, I will receive a payment of $1,645/mo. in 2021 dollars if I survive him.

There are other perks like free driver's license for him, reduction in real estate assessment depending on your municipality, free National and State Parks Pass. You should receive a disabled parking pass from your DOT.

Note that there are many "presumed connections" to Agent Orange. Try this link. https://www.publichealth.va.gov/exp...gent-orange/agent-orange-2020/presumptive.asp

DH has another of these conditions. His disability payment is therefore, even greater than the number I quoted above.

One last thing to note at this time though I may think of more. THIS IS NO TIME TO BE RETICENT. DON'T LEAVE ANYTHING OUT IN YOUR CLAIM. HE DESERVES EVERY BENEFIT HE IS ENTITLED TO.

Good luck. PM me with questions. I'd love to help you.

I am so humbled by all the help and advice I'm receiving here on the FIRE Forum. I just don't know how to thank you. I have felt so depressed and frightened for DH - it's like I was socked in the head and am still reeling from the blow.

It has been made very clear to me (thank goodness!) that we need to get a Veterans Advocate to help us. We re gong to do this ASAP. We are not sure how to go about this. Should we contact the local Veterans office? (mmm, yeah, good luck getting through since the offices are closed due to the pandemic...sigh...) Is that the best place to start? I will do what it takes!

I will start looking around online to do some research, but advice from you is such preferred!!

 

[CindyBlue]

Cindy; Try this link.

https://www.calvet.ca.gov/VetServices/Pages/County-Veteran-Service-Organization.aspx

AS I mentioned our state Department of Veteran's services provided us with an advocate. No charge. I googled the same type of agency in CA (your profile shows that you reside in CA). The link implies that they will assist you. From their webpage: "Assistance with completing applications for VA disability claims or other Veteran benefits."

A call should connect you with someone to answer questions on pursuing your claim..

Ohmygosh, our posts crossed in cyberspace! Thank you so much!

 

[Golden sunsets]

I am so humbled by all the help and advice I'm receiving here on the FIRE Forum. I just don't know how to thank you. I have felt so depressed and frightened for DH - it's like I was socked in the head and am still reeling from the blow.

It has been made very clear to me (thank goodness!) that we need to get a Veterans Advocate to help us. We re gong to do this ASAP. We are not sure how to go about this. Should we contact the local Veterans office? (mmm, yeah, good luck getting through since the offices are closed due to the pandemic...sigh...) Is that the best place to start? I will do what it takes!

I will start looking around online to do some research, but advice from you is such preferred!!

Cindy: There is no need to thank me. It is nice to be able to pay forward when info one has can help someone else.

I understand your feelings completely. I promise you it will get better. Once you make contact with an advocate, things will begin to fall in place.

 

[CindyBlue]

Cindy: There is no need to thank me. It is nice to be able to pay forward when info one has can help someone else.

I understand your feelings completely. I promise you it will get better. Once you make contact with an advocate, things will begin to fall in place.

I am clinging to this! ("...it will get better.") I already feel better having something to DO, some action to take. I sure wish it was Monday so I could call!

I am so sorry you and your DH have to do through this. It's such a frightening experience to have this diagnosis, and also to care for someone with the disease. You are in our thoughts and prayers...

And you know how grateful I am...you've been there...

 

[CindyBlue]

So Parkinson's is not easy to diagnose in the early stages? That sounds frustrating.

It's not easy to diagnose. The symptoms could be Essential Tremors or other diseases or conditions. It apparently can only be diagnosed by symptoms and by eliminating other things. Turns out his loss of sense of smell years ago is a definite early Parninson's symptom - but overlooked because it could be so many other things and happened so long ago. It is a symptom that was used by the neurologist in congruence with his more recent symptoms of shaking hands and loss of balance to start the diagnosis of Parkinson's.

I'm sure learning a lot...that I didn't necessarily ever want to learn...sigh...

 

[CindyBlue]

PD is a clinical diagnosis- there is no definitive test.

When I saw the bizarre list of symptoms that are associated with it I immediately said “oh s**t, that’s me.”

This is what happened to my DH. The questions the neurologist asked brought up a whole lot of "symptoms" that we hadn't even thought of as "symptoms" of anything, just isolated things that happened over many years as DH got older. We were assuming were a part of a natural progression of old age, when we thought of them at all.

But those symptoms were all on the list of the Parkinson's symptoms - we realized this as the neurologist was asking DH the questions. How weird it was to hear those questions being asked and to and make that connection. I thought exactly the same as you..."Oh S**t, that's DH!

Sigh...

 

[CindyBlue]

My mom has Parkinsons. She was diagnosed around 2005, I think. It's hard to remember, exactly. She had fatigue as a symptom from the beginning - that was what led her to get diagnosed. Aside from the fatigue she did well until 2008 when her medication caused her to have hallucinations, which caused her to divorce my dad in a very sad situation (she hallucinated that he was cheating on her). Post 2008, she did well most of the time but occasionally she would get hallucinations again, of varying sorts. Physically she was mostly good (tired, but able to get around, do her own shopping, etc) until about 2017.

Starting around 2017 she needed to use a cane, eventually progressing to a walker (with MUCH resistance) in 2019. Unfortunately around Christmas time in 2019 she developed dementia. She had had cognitive decline before that, such that she couldn't really use her computer any more and had asked me to take over her financial matters. At Christmas that year she forgot to buy any presents. Around March 2020 things got so bad that she didn't know she was in her own apartment. At this point it's progressed so far that she can barely hold a phone conversation and she's in long term care. She is also in a wheelchair at this point.

So she had about 12 reasonably good quality of life years but unfortunately eventually the Parkinsons won out. On the bright side, she seems quite happy despite what outwardly looks like a poor quality of life. She has been a pessimistic negative person for as long as I've known her, and she's currently the happiest I have ever seen her. So that's a big plus.

I'm so sorry to hear about your mom...Parkinson's and dementia ...so sad... At least she's happy now...a good way to go "...into that good night"...sigh... she is so lucky that she has you to help her through her journey.

12 years is encouraging, though. I sure appreciate your telling me about her experience.