Allison

@perkyparkie | contributor
Allison

What It Feels Like to Be 'On' With Parkinson's Disease

After my post about “What it feels like to be off,” it is now time to flip the script and explain what it feels like to be “on.” As I described in my previous blog, the term “on” relates to if your medication is effectively working within your body and your symptoms are under control.  Similarly, if your medications are “off,” you’re not feeling the effects of the medication. This can be called a “dose failure” and is usually due to poor absorption of the drug. Unpredictable absorption of PD medications can make it challenging to make any type of plans during the day because as many Parkies know, every hour can be different. Now before I go any further, please read the following disclaimer from my legal department: *All events or experiences described in this blog are solely based on Perky Parkie’s life adventures. And while some Parkies might have similar events, we are all snowflakes and no individual can replicate her exact experiences. Besides, who would want to?  She is a bit nutty. Furthermore, although freakishly smart, Perky is unable to diagnose, treat or predict the progression of any individual’s Parkinson’s disease. Seek the advice of a movement disorder specialist, because that’s why they get paid the big bucks.  By continuing to read this blog, you are agreeing to the above disclaimer and the responsibility of enabling Perky’s addiction to fro-yo. Blah, Blah, Blah. OK, now what does it feel like to be “on?” I can usually feel a dramatic shift when I first get up in the morning. After sleeping all night (hopefully), my body is depleted of dopamine, assuming that I didn’t get up in the middle of the night to take more Sinemet… or maybe to finish off that Ben and Jerry’s ice cream in my freezer. So my symptoms are angry and the first thing I need to do is to get the medication in my body and eat something. I can feel nauseous or worse if I take meds on an empty stomach. Trust me, there is no way to look cool, holding onto the toilet as you puke… I’ve tried. After I have munched on some silver dollar flappy jacks with Nutella for breakfast, I start the waiting game. Not all Parkies experience “dose failure” (when your medications are not effective) due to protein, but it can happen. Amino acids (from dietary protein) can interfere with the uptake of levodopa into the brain. Just imagine your medications are in a war against the bacon you just shoved down your face hole. They are both competing for absorption with their little pitchforks and torches. So for me, I stay far away from protein when I am trying to get my meds to come “on.” When will my Parkinson’s medications decide to work? I try to do something that is not stressful to allow full absorption of my drugs. I can’t rush my morning, because that will only make me slower. I also avoid anything that might cause me anxiety or emotional distress seeing as this can make my PD symptoms uncontrollable. Adrenaline is not a Parkie’s friend. So that makes fighting zombies, skydiving, or riding on the back of Pegasus a huge no-no. Until I am “on”… then watch out! Then as I am playing “Candy Crush” on my iPad, I start to feel little twitches in my muscles. I can feel my body becoming fluid again, the rigidity is leaving my body. My mood begins to shift and instead of feeling sad, depressed or overwhelmed, I feel like I can handle anything that comes my way. I can take deep breaths and stretch out my muscles that have been stiff all night. I feel like a different person. I’m not just a person struggling with Parkinson’s disease anymore… I am the Perky Parkie! The video below shows you what it feels like when I am “on.” The only thing that sucks is that this sensation is temporary. After an unpredictable amount of time, I can go “off” again or I can go “over” (as one of my readers puts it). Seeing as visuals tend to be helpful when trying to have someone understand what I’m experiencing, I have included some additional videos. I will try to squeeze out every minute of my “on” time. I will make phone calls, run errands, pick up fro-yo, write a blog, exercise, clean up my apartment or walk my dog Crash. Projects that require my full attention get my “on” time, because I am more productive while my medications are at their full potential. Even though I say that exercise is just as important as a pill, sometimes, when you feel bad, it’s difficult to motivate yourself. So every day when my meds kick it, I get my fitness on! Get it gurlllll! Then there are times that I might have too much dopamine in my body. This is when I am “over.” I struggle with dyskinesia, which is involuntary movements, can almost look like an uncoordinated dance. Which is totally not me, because I can rival Ginger Rogers on a good day. When it is severe, it’s uncomfortable and can draw unwanted attention. But truthfully, I would rather be slightly dyskinetic than rigid and slow… It just matches my bubbly, wiggly, goofy self. Once you have an idea of how medication fluctuations can greatly impact a Parkie’s quality of life, you have taken the first step in beginning to understand the disease and all the magical things that come with it. So close your eyes… well first read the rest of this paragraph… now imagine trying to get through your typical day with your body, mind, and spirit flipping through the “on/off/over” times with no predictability… that is the life of a Parkie.

Allison

7 Things Healthy People With Parkinson's Disease Do

Is it possible to be a healthy Parkie? Well, I have seen that some people with Parkinson’s do not always do what is in their best interest. They don’t take the steps to slow the progression of their illness. In many cases, they just feel overwhelmed and don’t know where to begin. Hopefully, this list can be a guide to help integrate healthy ways of getting ahead of your Parkinson’s. Here are seven things healthy Parkies do: 1. They don’t treat exercise as optional. What if I told you about a new pill just approved by the FDA that will help your mobility, increase your strength, stabilize your mood, sharpen your mind, decrease fatigue, alleviate constipation and help you sleep better? Have I gotten your attention yet? Then what if I told you that this pill has been scientifically proven to slow the progression of your Parkinson’s disease? I have a feeling that you would be sprinting for the closest pharmacy faster than a herd of snails. This pill does exist, but it’s not taken orally, and it’s not a patch you place on your arm, you can only get this medication when you get up and exercise. Yes, exercise is medicine. Healthy Parkies don’t view exercise as optional, they know it’s a requirement to stay healthy. So dust off those leg-warmers and slap on those sneakers because it’s time to exercise. 2. They follow through with their neurologist’s recommendations. So maybe we are all guilty of occasionally not doing what we are told… sorry, Mom and Dad. But remember, although we may think that we’re smarter than a dolphin, we don’t have the extensive education and training that our doctors have. Healthy Parkies do what their neurologists recommend. They keep regular appointments and communicate any new symptoms or possible side effects they are experiencing from the PD medications. This open dialogue will help your neurologist create the best game plan to attack your opponent. 3. They don’t see themselves as weak or a burden. Thinking that you have become a burden or have become inadequate since your diagnosis is just as useful as a pogo stick in quicksand. Don’t let Parkinson’s define you! You are not your illness. Healthy Parkies understand that they can still do things that they used to do, but they might have to modify it. As for the fear of becoming a burden, remember that a burden is something that is placed on you, not something you choose. Your loved ones are choosing to be by your side, regardless of Parkinson’s.   4. Regardless of diagnosis, they remain grateful. Yes, PD sucks. Yes, it can rob you of many things. But healthy Parkies are grateful for positive things Parkinson’s has brought into their world. Besides being able to do a spot-on imitation of a sloth… a great party trick… they may be grateful for how Parkinson’s has strengthened their relationships with friends and family. Parkinson’s disease can also be a great tool for weeding out toxic friendships. You find out who is really going to be there for you when times get tough. So if you are really struggling with the emotional pain of having a degenerative disease and you feel awfully alone, grab a piece of paper and a pen. Then begin to jot down things in your life that make you feel grateful. Now I can hear some of you rolling your eyes. But I am sure you are grateful for the bed you sleep in, the roof over your head, or the many people who are working hard each day trying to find ways to manage PD. Sometimes we take things for granted without acknowledging how blessed we are. 5. They are their own advocates. A healthy Parkie gets involved in their own treatment. Don’t just sit back and let Parkinson’s take over. They fight it. How? They educate themselves on the disease. They will learn about the treatment options and programs that provide support to Parkies. They seek out resources that will help them, such as Perky’s Picks… I know, shameless plug. If a healthy Parkie doesn’t feel they are getting the best care, they get a second opinion. If they need a medication that is too expensive, they investigate patient programs that they could qualify for to help with the cost. If insurance doesn’t cover a name brand medication they will recommend the generic form if available. If the healthy Parkie takes the generic but has a bad reaction, they will notify their neurologist to keep them updated. Then they will pick up their phone and contact their insurance company and see what options they have available to them, such as a tier exemption, which allows the name brand to be covered with a manageable co-pay. A healthy Parkie is willing to jump through the hoops of managed care to get the best treatment for their Parkinson’s disease. 6. They give themselves permission not to be perfect. This one is a tough one for me! Healthy Parkies recognize that their Parkinson’s can make daily activities seem daunting. Everything takes longer to complete and then fatigue kicks in and you find yourself on the couch feeling like a failure, watching “Keeping up with the Kardashians” while shoveling stale Twinkies down your face hole… oh really? Just me? Healthy Parkies give themselves a break if they’re having a difficult day. Maybe you won’t get to that heaping load of laundry, or that trip to Costco to purchase a gallon of mayonnaise. But they don’t beat themselves up about it. They don’t view their lack of efficiency as negative or need to take an afternoon nap as lazy. They don’t compare themselves to their pre-Parkinson’s self. They accept that they might not be able to complete all the tasks that they attempted to do but in turn celebrate what they did get done that day. Just like my friend Davis Phinney says, “Every victory counts.” Seek out moments, regardless of how small, when you were able to fight back against Parkinson’s. 7. They beef up their PD Wolfpack. A healthy Parkie knows that Parkinson’s doesn’t impact one person… So why would you try to deal with it solo? Your PD Wolfpack is a group of people (or pets) that you can rely on when you’re Parkinson’s is acting like a butt-head. Keep your pack strong, so you always have someone to fall back on when you need support… or just someone to howl at the moon with. P.S. I am always accepting applications for my Wolfpack. Applicants must be able to understand that my fro-yo “addiction” (that’s what my therapist calls it) doesn’t impact my ability to work and that I feel the best way to address this so-called “addiction” is exposure therapy. With that said, frequent trips to Yogurtland should be expected. It’s not enabling if it’s a crucial part of my treatment.