The "cause'' of PD

[slapdasch4]

I'm in the midst of applying for disability benefits through FECA, the USA Department of Labor entity responsible for health claims involvIng federal employees.

Here is a quote from the initial response to my claim:

"Although your physician explains that there is 'convincing epidemiological data linking increased risk of PD to environmental toxins' and that 'while direct causation is not established, it is clear that these exposures increase the risks of PD,' she does not give a definitive opinion that your specific exposures caused or contributed to your having Parkinson's disease. Simply supporting your claim and explaining there is an increased risk from being exposed does not give a rationalized opinion that exposure did cause it. If your physician feels that specific exposure in your federal employment contributed to your condition, the physician should identify the specific exposure and provide an explanation of how such work-related exposure contributed to your disease."

I think this response is off base for a number of reasons and reveals a total lack of understanding of the nature of neurological conditions and their development.

It occurs to me that more context might be useful here, but any comments are appreciated.

[Johnny72]

I've lived with PD since my early thirties, and I am now 52 as of today. I've lost everything including my wife (cheating whore), my career, my ability to drive and have some semblance of a normal life. As far as neurologist are concerned, most of them are useless and ignorant.

[Esperanto in reply to Johnny72]

I'm sorry for everything you've been through Johnny. Know you're not alone in facing these challenges. 🍀

In your case, was there also a possible 'specific exposure' cause of your PD?

[Johnny72 in reply to Esperanto]

Hello friend, and thank you for the kind words. My disease progression is almost certainly caused by toxic exposure and medication injury. Because it's becoming impossible to function, I'm completely ready to stop going to doctors. They're completely ignorant and clueless.

[Esperanto in reply to Johnny72]

Hi Johnny, Although there are certainly good neurologists, many of us have had similar experiences to what you have described. Unfortunately, I also haven't received any support from them. Not only do they lack insight into the developments of PD treatments, but even more frustratingly, they lack genuine interest in their field and their patients. They were not intrigued by the unusually rapid development of my PD along with peripheral neuropathy after the diagnosis, nor were they impressed by the later spectacular improvement of the PD symptoms. The fact that I currently need very little medication does not fit into their system and they are completely indifferent to it.

My salvation has been the introduction to the CP forum. The enormous variety of informative contributions is impressive. From there, I have been able to distill my own treatment plan that would never have been discovered or implemented by traditional doctors.

[Fricnfrac1999 in reply to Esperanto]

Hi, I may have missed something but can you please elaborate on "spectacular improvement of the PD symptoms. The fact that I currently need very little medication"...What did you do to improve your symptoms and reduce medication?

[Esperanto in reply to Fricnfrac1999]

You can see more in detail what has personally happened in my "bio", but here is a general summary:

As is perhaps known, many (most!) people with Parkinson's disease (PWP) have a vitamin B deficiency. Partly likely due to a predisposition because the B6 deficiency is also stress-related, just like PD, but also because the carbidopa in the C/L medication often prescribed after diagnosis further depletes B6. Due to the increasing B6 deficiency, your dopamine production works increasingly worse and you need more and more C/L, leaving almost no B6 left...

The bizarre thing is that B6 is almost never tested as a standard. In my opinion, everyone with PD should be tested for B6 annually. Okay, park_bear, also for B2. 😉 In addition to the damage it causes for your PD, B6 is essential for the functioning of many bodily processes. It plays a role in more than 100 enzymatic reactions in the body, but the most dangerous thing is that a B6 deficiency can contribute to the development of peripheral neuropathy (PN). The symptoms of which give me more problems than PD...

The good news is that supplementation with sufficient vitamin B6 can help significantly improve your PD symptoms and halt the symptoms of PN. However, nerve damage older than a year is usually irreparable. From experience, I tell you, don't let this happen! However, it is important to note that high doses of vitamin B6, especially the toxic pyridoxine, can be equally harmful and can also cause neuropathy and disrupt your C/L medication. Therefore, it is crucial not to exceed the recommended daily dose of B6, to choose a bioactive form of B6 (P5P), and to test regularly. It took me a year and a half to find balance.

Because of the interaction of all B vitamins, I recommend all PWP to take a daily plant-based or bioactive B complex or multivitamin with reasonable dosages.

healthunlocked.com/cure-par...

[lmastro in reply to Esperanto]

Esperanto could you please elaborate on what you created as your treatment plan. You could really be helpful in improving someone else’s life on this forum. Thank you

[Esperanto in reply to lmastro]

See my reply above.

My first post on CP 2 years ago was a call to everyone to test their B6. I have continued to do so, like some kind of John Pepper for B6 balance, but the responses were lukewarm. There must be millions of people with PD who are dealing with this phenomenon. You can easily do something about it! Don't say I didn't warn you... 🍀

[Shlim in reply to Johnny72]

I can relate. Have you tried n i c o t i n e gum...?

[Juliegrace]

Is disability through FECA your only option? Or is it better than SSDI? Do you have to prove what caused your PD in addition to proving that that you are disabled?

[Jebbie12 in reply to Juliegrace]

the fact still remains you have PD

[Juliegrace in reply to Jebbie12]

And this comment is pertinent why?p

[bassofspades in reply to Juliegrace]

it is pertinent because regardless of the cause, he has a disabling disease. Therefore he should be eligible for disability benefits. The only reason I can think of for determining the cause would be if there is a negligence lawsuit or something.

[RainbowKolibri in reply to bassofspades]

unfortunately there is much more to qualifying for disability than having a disability

[Juliegrace in reply to bassofspades]

Both Jebbie’s and your comments were not pertinent to my comment. They don’t make sense to the context of my question/comment, but it does make sense within the context of the original post.

[bassofspades in reply to Juliegrace]

Sorry friend, I thought you meant pertaining to slapdasch4's case

[Esperanto]

Based on the response provided by the FECA, there don't appear to be any factual inaccuracies. The response acknowledges that there is epidemiological data linking environmental toxins to an increased risk of PD. However, it also points out that the physician did not definitively state that the specific exposures caused or contributed to the individual's PD. Even in France, where PD is considered an occupational disease for winemakers, it is still necessary to identify and explain the specific work-related exposure.

Without further context, it is indeed challenging to determine if the response is completely off-base or if there is simply a lack of understanding regarding neurological conditions. Nevertheless, it emphasizes the importance of establishing a clear causal link between the specific exposures and the development of the disease in order to support a claim for disability benefits. That seems justified to me, but unfortunately an almost impossible task...

[RonB1]

The diagnosis of Parkinson's is more relevant than the cause. Unless you are pursuing a legal claim similar to Camp Lejeune? As for Long Term Disability, your Doctor needs to verify your Parkinson's diagnosis and the impact it has on your daily life. ie: Depression, Anxiety, Insomnia, Restricted Movements, Tremor, Cognitive Ability, Etc

[CuriousMe12]

Asses. It's like saying we know it's likely your mate was killed by falling into the pirhana tank but unless you can say which piranha delivered the fatal blte

[LindaP50]

I have no knowledge of FECA.

With the VA - one needs to state that a disease was "more than likely" or "possibly caused by" and provide the diagnosis, RX taken for the specific disease, and what particular environmental matter that may have caused the disease - such as contact with Agent Orange, or a specific environmental toxin.

With the VA your doctor writes a Nexus letter - here's a copy of the guidelines - veterans.nd.gov/sites/www/f...

Try again. Don't give up.

[Jebbie12]

get a lawyer. I was turned down from my Parkinson’s claim for disability until I got a lawyer and then it happened pretty quickly.

[bassofspades in reply to Jebbie12]

or get an independent medical exam by an unbiased third party. Thats what sealed the deal for me after SSDI turned me down twice based on my doctor's sloppy charting.

[peminc]

My wife works in a law office to get SSI and SSDI. The Feds are fussy. PD is a tough one. What helps is age and the severity. Or are you trying to sue them for causation, like an Agent Orange? That is even more of a challenge. Sorry to have to say all of this.

[slapdasch4]

Thanks for the replies, I appreciate all the input.

I'll supply a bit more information , which I hope will enlighten, as opposed to muddying the waters. While it's true , as one poster noted, the FECA response I cited concerning my neuro's statement wasn't technically inaccurate, I still think it leaves a lot to be desired in terms of its applicability. Unlike incidents involving, say, a sexual assault or a specific accident, you simply can't approach getting PD as a single event that occurred in a particular place at a particular time; no doctor anywhere will certify a statement to the effect that a patient contracted PD in such a circumstance. If this reality is not acknowledged, accepted, or understood, what's the point of having a discussion?

There are some other troubling issues, particularly involving timelines, that FECA trots out as a knee-jerk response to anything beyond the ordinary. They mandate a period of three years as maximum limit for filing a disability. The one size fits all approach is simply silly, completely arbitrary and, once more, at odds with basic PD features.

I could go on, but I'll spare readers for now.

[gomelgo]

I had not worked enough to get disability ... I wasn't working because I couldn't find work during covid. So no disability for me.