Psst, I got your fix baby! You know that thing that gives you a little kick? You feel so alive. Yeah, you know the one. By the way, would you like to buy an O?
If you've been diagnosed with Parkinson's, you'll need to become an expert in dopamine and various dopamine agonists, or you may suffer the consequences of obsessive compulsive behavior. This truth hits 100% of patients taking agonists. You can find a plethora of studies citing a much lower percentage in part because not everyone is being transparent. With the notable exception of The Kardashians, humans tend to want to hide things that trigger shame. Drug companies and patients alike have a keen interest in diminishing this common effect- it's messy, embarrassing...even shocking. Hoo boy, Parkie meds are tricky!
Please don't slay the messenger, I know it's rough. Like the disease itself isn't brutal enough. Yet, we have no choice but to prepare for the worst and expect the best. I listen for the warriors and find their footsteps on the merciless paths. They can help guide us through some pretty ugly times. Walking in this treacherous place, wondering how to survive the onslaught of ever-changing symptoms, I look beside me and there you are- still shining! We take turns carrying one another. That is why this blog is in existence. We rely on a team to survive, like the medical professionals necessary to jockey all this treatment and medication.
It's a full time job just to get by.
How much time do you actually spend with your neurologist or PCP? 10-20 minutes biannually seems to be the norm. Whether you have excellent healthcare or are highly educated and informed- you are unwittingly engaged in an internal war no one can see. Against time, for research, and against your own mind- but you keep pushing forward, for your loved ones. I see you. Every body is different, but it's no secret that chronic disease can cause immeasurable and unpredictable damage. If you aren't educating yourself about the finer details of agonists, you are missing what will fundamentally change your life. If you have already given up or don't have the energy to do some investigation, at least consider the other people in your life who will be affected by your journey with the uninvited guest named Parkinson's.
This third wheel causes a bit of trouble.
It takes an avalanche of love to stand by a person who is going on or off agonists. Don't take any meds lightly, as they can alter more than just your outlook on life. Medical journals, various online or local communities and published works (including the blogsphere) are your new best friends. Cherish those who share critical and current information and keep up on the writing published by fellow Parkies for info not paid for by drug companies. As adults we are counted upon to make major life decisions- about our marriages, children, living situations, sex life, choosing surgeries (DBS), and so on...while also on a medication known to disinhibit. You will see changes in your lifestyle if you take agonists- even if it is something as benign as suddenly choosing bright cherry red lipstick instead of your usual cherry Chap Stick.
Georg Stenberg did a survey published in the journal of PD that discusses the chemistry (linked below). There are numerous studies accessible with a few clicks on an electronic device or desktop, but in the interest of time, and for the sake of raising awareness, let's take a Parkie hike.
I'm not interested in any form of promiscuity, and tend to be more of a compulsive shopper, dancer, social media user... but who am I to judge how chemistry changes people? We get to make our own decisions, of course. It's just too bad we hurt one another in the process. Pleasure and joy is our birthright! Get what you want, but can we at least try to avoid stepping on the faces of others along the merry way? Stay awake and aware. It's not brain surgery! (Parkie humor fail.) The way we regard our own shame is the main reason we judge one another. Even the bravest souls in the PD community have felt somewhat ostracized and criticized by peers for simply telling it like it is. We need these warriors to stand up and speak whatever the truth is, in ALL communities. Exhibit A: 29 seconds from the documentary Sex, Lies and Parkinson's.
This took a lot of courage, and Vicki deserves mad respect.
Full disclosure: I did some bizarre things during the year or so that I was on a drug called Mirapex (Ropinerole, an agonist known to cause distinct personality changes). I was not myself for that period of time. In our online communities there are public apologies from dozens of folks who now realize their behaviors might have caused unintentional troubles for loved ones. What we don't know can hurt us, and everyone around. The mismanagement of pain is a universal plague of humanity and not a character flaw in people living with disease. I am not a person who is not satisfied looking at a mountain the same way everyone else does. I need to see and experience what is on the other side of that mountain, in my own way. I seek until I find answers, the hard way. That way I know they are true.
Overindulging. Uno mas, uno mas! Want another drink? Yeah, turns out I did too. I never was the one to pull the ripcord and end any night. Understandably, I wanted to keep dancing all night, making purchases I could not afford, and feeling everything more intensely. I was roundly criticized and completely misunderstood by a partner at the time who understandably had no idea of the chemical storm I had signed up for while taking this particular medication. I made purchases and drained the only savings I'd ever had- no backup. Some folks were willing to participate in this because they didn't know what was up. I had limited knowledge at that time, and I am the one with Parkinson's, so how can I expect them to get it?
It is not rational nor fair to expect those around us to "get" the nuances of a disease we are still trying to understand ourselves.
I didn't lie to anyone, but I was extremely impulsive- a departure from my former behavior. This is why I went off Mirapex, even though it had benefits. Lack of dopamine aside, some folks are just not honest with themselves about their public persona vs their actual behavior. With tragic consequences. What's your excuse? Everyone enjoys a bit of editing in a vain attempt to dismiss or rewrite history. I'm just not a fan of those who lie or take advantage of others who may be vulnerable. Good for you, you had an orgasm! Now, what about the kids and your wife at home taking care of the little darlings, while you are out acting like a young Warren Beatty? Yeah, not cool. Yet, who among us has not done some uncool things?
I don't care how many medications are suggested in your PD journey. It is the responsibility of each of us (or caregivers in some cases) to maintain a level of balance. Our doctors are making suggestions. Can we all check our own chemistry please? We owe it to our loved ones, at the very least. It doesn't have to be cloaked in shame or hidden, it just requires support and education. The real problems will begin if you are in denial or if you choose to avoid the complete truth of your reality. To compartmentalize or pretend it's all good is a flimsy and temporary place to hide your dirty little secrets. We can benefit from brutal honesty.
It begins something like this: You sit in shock while your diagnosis is delivered by the good doctor. He remains stoic while emotions flood, your wrists get hot, and the room swirls with vivid images of your formerly healthy life. Like reel to reel home movies Momma spliced, scratched and jerky in movement- just like Parkinson's. Blow out the candles, you might die a bit sooner than expected. My God, the children!
I am so sorry, but I'll be leaving sooner than promised. I thought we had more time together.
The doctor places a prescription into your hands, and if you weren't shaking before, you are now. The process of elimination has been so tedious that you are already exhausted, but this is just the beginning.
Oddly, you find yourself relieved in a warped sense of time and space- an eerie calm washes over you, like a post-surgery Demerol drip. You finally have an actual diagnosis. Well Hallelujah, I am not insane after all! It's just a little dopamine deficiency. You make a mental note to "google" Parkinson's, but all you find are photos of MJ Fox and images of shaky old men. The doctor sprinkled his monologue with words like substantia nigra, dopamine, movement disorder, Sinemet, agonists. The loss is incalculable. By the time you are diagnosed, about 80% of your dopamine cells and receptors are gone, baby, gone! You can't get them back, you can only pray some genius will discover a way to slow or stop progression. If this isn't enough to drastically change your personality, just wait until the drugs hit your bloodstream!
You might remain in this state of trauma and shock for several years, yet will be expected to keep up with life. You don't feel well? That doesn't excuse anyone from basic life maintenance, and parenting and, and and... Oh, You "can't move," you say? Well, take some drugs or see another doctor, honey. "Put your big girl panties on," they say. "You are acting strangely, by the way." Can you think of any reason why PWP or anyone who has been dx'd with incurable disease might be acting strangely? I dare you to try my daily routine. Oh right, we are not alone in our relative challenges. If you are reading this you may be in a level of hell you feel no one understands. It is possible, through advocacy and awareness, it's possible that this will change and even with those lacking any personal experience with a brain disease will understand.
YOU ARE NOT ALONE. You don't have to have Parkinson's to let this truth really sink in.
To say there is a lack of understanding or compassion is a gross understatement. People who have little experience with disease and are lacking in empathy remain blissfully unaware. I used to be unaware, but wow, I am wide awake now! You cannot unring a bell. I take a beating from this condition every day...and every day I get back up no matter how much it hurts. I put my gloves back on. I will not go gently into that pit of destruction. There are many of us working tirelessly to raise awareness, in spite of our challenges and busy lives. I'll direct you to exhibit B:
I'll be writing more about Allie in another blog about exercise, because she is simply amazing.
If you or someone close to you has been diagnosed with a chronic and incurable disease, you know things get real, immediately. You thought you were weak, but you are about to find out just how strong you really are. There is no space nor time for anyone's swollen ego (including your own). Either your inner circle gets on board with this new reality, or they leave because it's too much for them. Don't hate them for it. They left because they fail to see what is going on. It's a blindness we all take turns suffering. It's no longer up to us, and you may be surprised at who takes off because...
You have no choice. Find your true comrades. What miracles await!
I'll let you be the judge of whether they didn't love you enough, or were too wrapped up in their own lives to comprehend your new reality. Chaos terrifies the anxious or controlling among us, and disease is a spotlight for the part of life (and death) that a lot of people do not feel comfortable seeing. Let them go. You cannot force anyone to love you. People who really care will take their place. They will be the best friends you will ever know, and I hope you cherish their presence in your life. If you lose your way temporarily, remember there are thousands of big hearts and bright minds participating in Parkinson's support groups, online groups that inform about anxiety and depression, and all forms of communities for those living with disease or chronic pain.
To continue our Parkie hike, you may hear a prescribing physician say something along the lines of, "If you experience any compulsions like shopping, gambling, sex or other addictive behaviors, let me know."
When you find yourself blacking out in a club, surrounded by hookers and a line of coke at 3 AM, I bet the person you call is not your neurologist. Fail to check in with your doctors at your own peril though, because you will pay for the crafty and often severe changes in personality. Families and relationships are dismantled, fortunes lost, health further impaired, and integrity lost. I have witnessed good people do some incredibly hurtful and strange things while on these medications. I have done something I regret while taking this med. All that really matters is that YOU get this right and stay healthy.
If you mess up, lean on your friends who make some effort to understand, and just be honest about your situation.
You may be wondering why anyone would remain on a dopamine agonist regimen, knowing these risks. Not everyone goes off the rails. It's simple: Do you want to shake, experience extreme stiffness, pain, freezing, depression, anxiety and a host of other symptoms that disable you completely, or would you rather make this deal with a new devil and take your chances? It's been likened to cocaine and surely the devil will be tapping on your righteous shoulder, but your body needs the assistance of medication for things like basic movement. The ability to move your own body around is kind of important in this life. People who have seen me off medications are often a bit startled. It's just part of the drop we all experience on occasion.
If you rely on treatments that have side effects, get to know your body's reactions. Everyone is different, but the meds have common effects. It is imperative we read the fine print. You have everything to lose and nothing to gain by avoiding the details, where a devil may be hiding. His game is predatory and he is counting on your ignorance. Agonists aside, we all have work to do on compassion. We'll be discussing this again until everyone understands the truth of the matter...this means we'll probably be discussing these topics forever. Thanks for reading. Links below: