Here’s What Parkinson’s Education Can Look Like As Many Of Us Navigate Being Our Parent’s Caretakers

As our loved ones get older, it becomes crucial to pay attention to new characteristics that may arise with aging. Whether it’s the way they are acting, moving, or any changes in their physical demeanor – it is better to be aware of it than to brush it off. Rather than delaying something that could affect our elders in the future, make sure everything is okay now. Even if it ends up being nothing to be concerned about, especially since many of us are navigating being our parent’s caretakers. One of the diseases that come to mind when we think of issues that affect seniors is Parkinson’s disease. 

According to Mayo Clinic, “Parkinson’s disease is a progressive nervous system disorder that affects movement. Symptoms start gradually, sometimes starting with a barely noticeable tremor in one hand. Tremors are common, but the disorder also commonly causes stiffness or slowing of movement.”

However, symptoms go deeper than that as Parkinson’s disease comes in a variety of forms. For instance, did you know that a loss of smell could be an indicator? While these lesser-known symptoms could be linked to other medical conditions, one thing is for sure: We must put the effort to recognize any type of symptoms early on and prioritize health as much as we can. 

One of the foundations that research Parkinson’s disease is the Parkinson’s Foundation. Not only do they prioritize the Latine community by including them in their genetic research, but they also help educate vital information surrounding the disease in the Spanish language to reach our Latine communities.

To further understand Parkinson’s disease and how to navigate it, BELatina News got the opportunity to talk to The LARGE-PD study research lead, Ignacio F. Mata, Ph.D., from the Cleveland Clinic. He is part of the first upcoming Spanish-Language Parkinson’s Education Conference “Life Beyond the Basics” that is happening, virtually, on Saturday, May 7th. 

The virtual conference is presented by the Parkinson Community Los Angeles (PCLA) to further educate our community about medications and treatments, as well as caregiving – basically, your 101 guide about Parkinson’s disease.

What are the common misconceptions in the Latine community that surrounds Parkinson’s?

The Hispanic community initially brushes off symptoms and says it’s just, “My grandparents are just getting old and that’s why they’re kind of slow and when they’re walking and they lose their balance.”  Sometimes we associate that with aging itself without thinking that there’s a neurological disorder underneath that. That’s probably one of the biggest issues that might delay people seeking clinical care. And, obviously, the bigger issue here is that – especially in the U.S. –  a lot of the Hispanic communities live more in the rural areas where there might be less access to neurologists.

How do you think that we can educate our Latine parents about this disease?

Foundations like the Parkinson’s Foundation and others have a lot of material. I’ve been a huge advocate to translate those to Spanish and also make them culturally appropriate to a reading level that is easy to understand – even by people that might not be highly educated. I think that’s one of the biggest problems that we have; sometimes we use big words that are not necessary to explain it, and it becomes really complicated for our elders. So, I think there are resources there that we need to make sure people have access to. But I think children and grandchildren who have access to the Internet with lots of information might be a very important part of this chain. So [they can] make sure that they give this information to them and encourage them to seek medical advice as soon as some of these symptoms show up.

What are the early signs of Parkinson’s?

Non-clinical symptoms. There are several. The way individuals with Parkinson’s walk is very particular. They use small steps, it’s slower. Sometimes they freeze. A lot of the time one of the arms don’t swing as they’re walking. So one of them will swing, but the other one doesn’t swing. The tremor is very well recognized as well. They lose the features on their face, like their expression as well. Their voice kind of goes down and their writing becomes small too. 

Those are some things that are more obvious. But, I mean, there are lots of other things. Unfortunately for us, they are not specific. So, it doesn’t mean that everybody that uses the shuffling, we call it “shuffling walk,” or, for example, loss of smell. Several years before they are diagnosed, most people with Parkinson’s disease will say that they lost a sense of smell, but it doesn’t mean that everybody that loses a sense of smell gets Parkinson’s.

And if our parents or someone we know is suspected to have Parkinson’s, what should we do about it?

The first thing is to get it diagnosed. Unfortunately, it’s a neurodegenerative disease. That means that we can’t cure it and it will follow the progression. But the earlier we can diagnose it, the earlier we can start treating it. And that means that we can control the symptoms. I think it’s very important to get early detection. Talk to the primary care physician and if the primary care doesn’t have the expertise, or they don’t really know what’s going on, then try to seek a specific movement disorder specialist or a Parkinson’s disorder specialist – that will be the key. 

As an advisor to the Parkinson’s Foundation’s Hispanic and Latino efforts, what do you strive to do in the Latine community with your research?

The first thing that we want to do is increase representation.  I do genetic research, which is highly represented by individuals of European ancestry. I think from all genetic studies that have been published in the last 20 years or so, more than 85 percent of the individuals that participated were of European ancestry, and then I would say maybe 18 or 19 percent of those were of Asian ancestry. That means that the rest of the two or three percent includes Hispanics, African-Americans, Pacific Islanders, and Arabs.

All those populations are very underrepresented – specifically Hispanics. [They] are less than 1 percent of all the individuals that participated in genetic research, which means that we don’t know much about how the disease might affect them differently. Also, as their reactions to the drugs. We don’t really know how the progression might be different and how the treatments in the future might differ depending on your ancestry.

So, one of the goals that we have in the advisory committee is to try to increase that representation in all the studies that both the foundation and also researchers associated with the foundation are doing. This means a lot of times we have to educate patients about the disease and about the research.

A lot of the efforts that I do and a lot of my time are spent giving talks to patient support groups, promotoras, and individuals that are part of the healthcare system. I try to explain why doing research is important and why it’s important that our Hispanic community participates in this research. Many times kind of debunking some of those myths that are going out there about participating in genetic research – and there are a lot of them.

That’s one of the goals. The second goal is to understand that this is better and then be able to use that information to develop strategies to better take care of our Hispanic community. 

In terms of Parkinson’s disease, the ultimate goal is to be able to see what affects our community, why they get Parkinson’s, and what kind of things we can do to – maybe not prevent it – but help them to get the best care possible.