Developments in Parkinson's Diagnosis: New Tests, Alpha-Synuclein, and Looking Forward (Part 2)

[@stevemarshall7661]

Wow such great info from him.. I’m 49 and currently going thru the testing for Parkinson’s with my Neurologist and Stanford University. My history which I’ve documented the last 30 years is the important factor that I’ve strongly urged each physician to consider. I believe signing up for the PPMI study that I’ll be receiving all of these mentioned test. I’m very much looking forward to the skin test and genetic test as well. I have an MRI next and a nerve test as well from Neurologist so that will be interesting. I had the “left pinky tremor” begin occurring at 34 which blew my mind but that was the beginning of me slowly losing my fine motor skills in my hands. Unbelievable to watch it happen slowly while I’ve watched my Father battle Parkinson’s since 1997’. Everyone reminds me of the slim chances that it occurs in both a Father and Son..I remind them that I was struck by ground lightening in front of me and there was a slim chance for that as well. Being stuck inside the body that vibrates (vagus nerve) and tremors yet not many can see it because they only see you for short periods of time. It’s tough to explain to normal people or doctors.

[@davisphinneyfdn]

Thanks for sharing your experience. We hope your visits with the neurologist are productive. You might consider the order in which you pursue testing. Don't overlook the DaTscan, which still has clinical utility and may cost less since it is already in more insurance systems. Also, there are some clinical trials (PD GENEration and others) that provide no-cost genetic testing.

[@splashesin8]

@@davisphinneyfdn This helps to know as well.

[@smcm8467]

Can you tell me what is the advantage of knowing you are liable to get Parkinson’s early in your life. Does it help in treatment? Can you prevent symptoms from getting worse? What’s the biggest reasons in spending millions on this? Thanks

[@davisphinneyfdn]

There are some advantages to learning if someone is at higher than average risk of developing Parkinson's. First, exposures to multiple risk factors can further increase the likelihood a person develops Parkinson's; this has been researched in the context of genetics, chemical exposures, and brain injuries like concussions. More on this is available on our website: davisphinneyfoundation.org/industrial-chemicals-pesticides-and-parkinsons/ Second, some studies have found that higher rates of physical activity correlate with decreasing risk of Parkinson's, so there is some argument that those at higher risk of Parkinson's could benefit from increasing their level of physical activity. Here is one example, involving 23,000+ French women: www.neurology.org/doi/10.1212/WNL.0000000000207424. Third, those at higher risk of Parkinson's may have a special role in research to delay progression in Parkinson's. If we know a person is at an elevated risk of developing Parkinson's and we intervene early in some way which causes that person and others who receive the intervention to never develop clinical symptoms of Parkinson's, that might be an indication that the intervention had a disease modifying impact. Two important additions: 1.) there may be costs to a person knowing their risk, too. For example, some people may experience anxiety or other mental health impacts if they learn they have an elevated risk of Parkinson's. 2.) Everything above is written in the context of a person who knows they have an elevated risk but would not meet the clinical standards for a Parkinson's diagnosis. Still, much of the above may apply to people who have early Parkinson's, too. Increasing exercise, minimizing chemical exposures, and avoiding traumatic brain injuries are good strategies for living well with Parkinson's, too, and some clinical trials are available only to those recently diagnosed with Parkinson's.

[@splashesin8]

Still not sure what to think. Wondering if ssi can grasp or accept the iffyness of these tests as diagnostic enough. Either way it's overwhelming.

[@davisphinneyfdn]

Thanks for your comment. Your uncertainty is understandable. First, there's still a lot to learn about alpha-synuclein's role in Parkinson's; second, researchers are still looking into the full picture of what these new tests can tell us. Still, one takeaway from this podcast is that these new tests can help improve confidence in a person's diagnosis by providing additional information. Exactly how this information is useful will depend on a variety of factors, including the reason that the diagnosis is challenging. Another thing to note is that, as of today, the new tests typically involve out of pocket cost. Because of this, before you use one of these new tests, it is important to talk with your care team to discuss a.) the information your care team is looking for, b.) why they are looking for it, and c.) what they will be able to clarify with the results of the test you are considering. You may also want to talk with the manufacturers of the tests, CND Life Sciences and Amprion, about your circumstances prior to ordering.

[@splashesin8]

@ Thanks❣️

[@stacey1994]

I have very good health insurance in the United States, and even with that my insurance told me my out-of-pocket cost would be approximately $900 for the syn one test 😮.

[@davisphinneyfdn]

We totally understand your frustration-healthcare costs can be overwhelming, even with good insurance. In cases like this, both the Syn-One and SynTap test manufacturers sometimes offer assistance programs. It’s worth looking into those options. We know this isn’t a perfect solution, and healthcare costs are a huge challenge for so many people. If you're interested, we also have a blog post that might offer some tips on reducing the costs of Parkinson’s medications and treatments: davisphinneyfoundation.org/reduce-cost-parkinsons-medications/