I wish more than you could ever imagine, I could bottle up whatever is working for me. I wish I had a cure-all or at the very least, an answer to all of those people who watched me on TV, were at the edge of their seat, reached for a Kleenex and supported me from their couch. Unfortunately, for me, an empath, I have none of those. No magic bullet, or limitless pill. All I can tell you, is what is working for me, right now.
When I was originally diagnosed, then treated by my Movement Disorder Specialist, Dr. Joseph Jankovic, I was prescribed one 100/25mg. Sinemet (Carbadopa/Levodopa) three times a day, one .25mg. Mirapex (Pramipexole) three times a day, and one 1mg. Azilect once a day.
For me, the drugs gave these effects. Sinemet was my game changer! My first tremor was noticed six years ago as I held a coffee pot. Because of stress, I couldn’t type, or frankly move my left arm without the assistance of my right arm. I drug my left foot. I had extreme pain and muscle tension in my neck and traps. I got dizzy anytime I stood up. I tremored as if my left arm were a fish out of water. My face was almost paralyzed of non-emotion, because of “the mask.” I began slurring and started to choke. All of that is until Sinemet. Within 48 hours of taking my first dose, I was typing again for the first time in three years! My tremor stopped! The muscles relaxed and I began to get my life back! When I began, I was put on a half dose to start off with. This fall, I remembered how initially only a half dose did miracles. Why was I taking a full pill per dose if I didn’t need to? So, I began splitting pills. Instead of taking 3 whole Sinemet a day, I take 1 1/2. I felt no negative side effects, and discovered this was a more proper dose for me.
Pramipexole is a dopamine antagonist. In the simplest description, it’s a synthetic drug to emulate dopamine, but unlike Sinemet, isn’t dopamine. Pramipexole has tons of nasty side effects, like aiding in addictions, narcolepsy, and swelling. When I went off it, to test what it did, within 48 hours my muscle tightness and pain returned in my neck and traps. This is why I continue to use it. According to my doctor, I take such a baby dose, I shouldn’t feel those side effects. What I do notice, if I take four pills or 1 mg. in a day, I have difficulty staying awake to drive. This was a recurrent problem when I was heavily training for American Ninja Warrior. A lack of sleep may have aided in this problem, but when a huge cup of coffee can’t help you stay awake on the road, even when it has in the past, it’s probably a side effect.
Azilect is usually prescribed first, as it’s thought to slow progression. I can not vouch for that, but I can tell you it keeps the Sinemet in my system longer. Less Sinemet, means fewer drugs. Fewer drugs mean even fewer side effects, including the dreaded DYSKENESIA!
I have been supplementing my life, my entire life. I’ve supplemented tangibles, like makeup and clothes for building memories. I’ve supplemented being in a lonely marriage for being happy all by myself. We tend to supplement what we don’t get naturally, and because of that I’ve never remained consistent with supplementation. Last year, I counted all the pills I was taking a day…26! And that was mainly supplements! It got to the point about this time last year, where inconsistency took over and I fell off the supplement wagon. Here is the post I wrote regarding all the supplements I was taking.
Here is what I’ve discovered while taking only a few at a time. NeuroScience’s Balance D’s main ingredients are. Vitamin C, B6, Folate, Selenium and a proprietary blend of N-acetyl-L-cysteine, N-acetyl-L-tyrosine and Mucuna cochinchinensis seed extract. When I take two of these in the morning, mixed with my cocktail of meds, I don’t come “off” my meds for seven hours. Without this supplement, they last only three hours. That’s huge!!! Again, less meds, the fewer the side effects! I also take a high grade dose of Omega 3’s when possible as they are good for brain health. And I take a Magnesium supplement to keep me regular and aid in sleep.
I believe food is very important for our overall health! Diabetes and obesity are at epidemic proportions. The majority of our vitamins and minerals come from and are better absorbed through food. However, you must be cognizant of when you take your meds, versus when you eat. Through my own research I discovered both protein and Vitamin B prevent the absorption of Sinemet. So, you must wait 30 minutes after taking your meds before eating or wait several hours to take your meds after eating, and I try to only take B vitamins at night.
I am a foodie! I love amazing, melt in your mouth food! However, for the most part I eat relatively clean. I love salads with kale and spinach and chicken and fish are my typical proteins of choice. I try to eat organic when I can and I’d rather have raw veggies over cooked any day. With all of that said, I believe the Mirapex makes it difficult for me to keep weight on. With my workout regime as intense as it is, I can lose five pounds very quickly, if I’m not careful. So, I will often eat ice cream with a Butterfingers sprinkled on top or a box of Milkduds. Sugar is not good for you! However, it does boost dopamine, and again, with my activity level and overall health, it’s something I can afford to indulge in.
As soon as my doctor said, “Exercise is the only thing proven to slow the progression of Parkinson’s, so get moving,” I listened and got moving. I started off slow and free, heading to my local high school track. I began jogging a lap to warm up and then would head to the bleachers. Bleachers for someone with a movement and balance disorder can be disastrous. I went slow and would grab on to the railing anytime I needed. I never ran them. Instead, I walked up and down with very thoughtful movements. Before long, I was sprinting up to a mile on the track and doing ten sets of three bleachers. Doing bleachers helped me regain my balance. A girlfriend of mine, who is a neurological physical therapist said, “if you don’t use your balance, you lose it.” The first round I do normal bleachers, the second round I step wide, and the third round I alternate raising a leg.
Around this time, it was July of 2015, and working out outdoors became a game of ‘Will I Finish This Workout Without Passing Out?!’ So, I headed indoors to the confines of a gym, where I continue to work out now two to three days a week. I usually do four sets of eight, with as much weight as possible, alternating legs and upper body. I like to do four to five exercises focusing on the butt, which includes squats, lunges, straight leg deadlifts and a targeted series, that includes donkey kicks and fire hydrants to really plump up my non-existent derriere. The following day, I’ll do bicep curls, tricep pulldowns, shoulder presses, lat pulldowns and a chest press. This will vary as to the exact type of exercise, but I try to work each muscle group during my workouts. I’m also trying to incorporate more ab exercises into the days I lift weights.
Two to three days a week, I head to the ninja gym. This is where the real fun begins. No matter my day, I’m instantly in a good mood at Iron Sports Gym. Every time I fly five feet from one bar to the next, I have this huge rush of accomplishment followed by naturally made dopamine. As I climb up the “Devil Steps” upside down with only the use of my arms, I know I am killing Parkinson’s with each step. With every pull-up, climb or swing I know I am winning my battle over an incurable disease. I have seen huge improvements over grip strength, balance and agility at the ninja gym. I take a full Senimet before working out at the ninja gym, because my metabolism is burning it up. However, because I am moving with such intensity, I don’t have dyskinesia while training!
Researchers are uncovering that not only high intensity exercise, but exercise that moves you beyond your comfort level have neuroprotective qualities that may not simply slow, but reverse neurological disease symptoms. When I heard this, I immediately thought, “Of course that’s true. I’ve seen this in my own personal experience at Iron Sports Gym, ninja training.” With each move I make, I am overcoming fear of failure, falls and fractures.
“Kill it!” “You’re overthinking!” “Be fearless!” These mantras are repeated over and over to ninjas. Out of my comfort zone? Yes, I think I’m achieving that.
FULL DISCLOSURE: I am 38 years old. I was a cheerleader, gymnast, runner of long and medium distances as a kid. After high school, I taught gymnastics for a year, lifting girls 50 pounds heavier than myself into back tucks. I became a personal trainer by the age of 23. I continued working out through out my adulthood, but was never consistent.
Each of us are snowflakes in life. We’re completely unique, which makes us special and beautiful. Parkinson’s is no different to life. Each of us that have been labeled with PD vary in symptoms, age, activity level before and after diagnosis and the “cocktail” of meds that may work for us. While this plan works for me right now, very soon it may change. I am experiencing increasing dyskinesia in my left arm. My next movement specialist visit will determine what, if anything, will change.
None of this is a magic pill. I am not cured. I still tremor when I awake. My movements are slow and rigid. I still face the same prognosis that each of you share, but I’m fighting back! I truly believe that by pushing myself physically, I’m taking control of my disease. I have set up healthy boundaries in my life and do not allow triggers of stress to invade my circle. I control only what I can, and hand the rest up to God.
People ask me every day how I continue on, remaining so positive. I am just me. This is all I’ve ever known to be. However, the simplest answer I can give you is the day I was shot, the day my neurologist pulled the trigger with the words, “You have Parkinson’s,” was the day I got the chance to be reborn! And this snowflake woke up realizing each day here on Earth is just another amazing opportunity to just be me!