Who Will Advise Us When Parkinson's Hits?

Getting diagnosed with Parkinson’s is a devastating moment to Parkies and those who know them. The emotions that surrounds the newly-defined term are likely to bring tears, shock, anger, denial and confusion. All the stages of Kulber-Ross get squashed into a ball, and WHAM! There it is, waiting to be deal with. That’s hard enough, but what if you don’t know what this thing is? How do you come to understand the hand you’re dealt if you don’t know what's real in Information Land? Who else can help you if your doctor is now spouting big words defining procedures you don’t understand? Who can advise us of our options?

That’s quite the pickle to be in.

To advise students

In my day to day life, my job is to advise future and current college students on their options for classes and majors. I guide them through the complicated process of entering higher education. I will reflect with them on how this is the biggest decision of their young lives. It’s also their time, money, and effort. What do they want out of it? Other times, I will help advocate for better options for them to “keep the good stuff good” and “the bad stuff from getting worse.”

Some students will say that they aren’t sure what to ask. This will lead to frustration and fear since they know they need this, but they aren’t sure how to obtain it. At the point, I will confirm that it’s hard to know what to ask when you’re starting out. To combat this, I will get them taking notes while pointing them to helpful people like major advisors or other counselors. I will enroll them in the mandatory College Success Strategies class, and tell them to contact me about whatever, whenever. I’m on their team. I can keep their team to a couple staff members or find enough people to help them that they could play football.

But I’ve been in higher education as a student, teacher, tutor, and advisor since 1997. I know the waters. If I don’t know, I can find out. They don’t, but they will learn through assistance and experience.

Along the way, I’ll encourage bringing family or significant others to the team. Having a home team is an important step to a degree. They cheer people on, give hugs and encouragement, and they pick up the slack. Imagine not having that! How would we get people to be medical, educational, legal, business, or science professionals? Nevertheless, in all too many places, we don’t always have access to a central hub of people who are paid to keep the good things going well and the problems from getting worse. Other times, people are afraid to ask because they think they will be looked upon in negative words if they ask. Nothing could be further from the truth, but it’s “crickets” until academic probation time. Then what?

This is a huge concern for Parkies entering the medical treatment process. Thus, I’m going to rewrite those paragraphs medically, but keep the same form.

To advise people with PD and their support systems

In my day to day life, my job is to advise Parkies on their options for healthcare, legal affairs, and financial concerns. I guide them through the complicated process of being diagnosed. I will reflect with them on how this is the biggest change in their entire lives. It’s also their time, money, and effort. What do they want out of it? Other times, I will help advocate for better options for them to “keep the good stuff good” and “the bad stuff from getting worse.”

Some Parkies will say that they aren’t sure what to ask. This will lead to frustration and fear since they know they need this, but they aren’t sure how to obtain it. At the point, I will confirm that it’s hard to know what to ask when you’re starting out. To combat this, I will get them taking notes while pointing them to helpful people like patient advocates, doctors, or other counselors. I will encourage them to enroll in fitness and information groups, and tell them to contact me about whatever, whenever. I’m on their team. I can keep their team to a couple staff members or find enough people to help them that they could play football.

But I’ve been diagnosed since 2016. I know the waters. If I don’t know, I can find out. They don’t, but they will learn through assistance and experience.

Along the way, I’ll encourage bringing family or significant others to the team. Having a home team is an important step to treatment. They cheer people on, give hugs and encouragement, and they pick up the slack. Imagine not having that! How would we avoid additional stress and depressions? Nevertheless, in all too many places, we don’t always have access to a central hub of people who are paid to keep the good things going well and the problems from getting worse. Other times, people are afraid to ask because they think they will be looked upon in negative words if they ask. Nothing could be further from the truth, but it’s “crickets” until hospitalization. Then what?

See?

Educate and advocate

Let’s think about it. Going to the doctor is scary enough to begin with. Now, we’re going to add a progressively deteriorating neurological condition to the mix. Then, we have doctors who are going to recommend big words with technical definitions to take care of us. Medicine names and procedures make our heads spin! How are we supposed to decide what we’re going to do on the spot?

This is why people need patient care and medical billing advocates and affordable access to them. As the healthcare debate continues to rage in America, certain candidates will back this very necessary option’s availability. After all, going private can cost hundreds an hour.

Many times, we don’t think about things like this. We internet savvy youngens and knowledge seekers do this all the time, but what about those who are just starting their Master’s Degree in Advanced Search Engine Generated Healthcare? How do they stop the businesses from marketing to them in the form of sites that look informative, as opposed to their lucrative nature? How do we get rid of the conspiracy sites, the “Big Pharma” loathing, and the poorly researched sites that pander untruths?

It’s up to us to educate and advocate. Every Parkie is connected to people. Family, friends, and neighbors, as well as co-workers and people our jobs serve are affected by our condition. By marrying me, my wife is financially bound to me. If you have kids or parents that would have to support you, the same is true of them.

In short, Parkinson’s has ramifications. When the front pin is knocked over, up to nine others can go down with it. Correlation and causation. Cause and effect. Parkinson’s is one disease in a world of many devastating conditions that pop up suddenly. Without protection, the storm can get a lot worse in a bottomless pit. For this, having an advocate to guide us and the generations that follow through the process isn’t just ideal, but it’s essential.