Nicole St. Arnaud

@nicole-st-arnaud | contributor
I am 39 years old and newly retired because of Juvenile Parkinson's disease. I have 20 years experience fighting with my body and trying to fix it. I am also a mother to a dynamic two year old. I am now muddling through life trying to focus on beauty, peace and healing. I write about my experiences here and on my blog: aslowerkindoflife.com

Don't Be Afraid to Use a Mobility Aid for Parkinson's Disease

Fourteen years ago, way before I received my juvenile Parkinson’s disease diagnosis and my official blue disability parking pass, I thought I would use those shoes children wear with the wheels in the heels to get around. My right foot had this annoying tendency to drag with each step, so I thought it would be easier to roll. I imagined myself coolly gliding down the city sidewalk, bobbing in and out of pedestrian traffic. When I tried the shoes, I found the balance was more difficult than I thought. I had to lean back — way back, to tip myself onto the wheels in the heel of the shoe. My adult body didn’t trust that I wouldn’t continue to fall back onto the hard concrete of the sidewalk. End of rolling dream number one. My next grand idea was to get one of those kick scooters. I imagined myself kick-scooting breezily along the sidewalk on my urban commute, wind in my hair. But my inner critic said, “An adult on a kick scooter? Come on Nicole, that would look silly.” Sigh. If only I had had the courage. End of rolling dream number two. My initial optimism for rolling lost, I resorted to dragging my stumbling, spastic body around and hiding the difficulty I was having. I used a cane sparingly, mostly when I didn’t think I would see anyone I know. I didn’t know how to explain why I could move easily at some times and others not. I thought people would be confused if I used a mobility aid sometimes and other times not. Recently, my friend told me about seeing a circus performer who performs using crutches. When she visited him backstage, she was surprised to find that he was using a wheelchair and said so. He told her that using the wheelchair is what allowed him to conserve his energy so he could dance using the crutches on stage. If he spent his whole day dragging himself around on crutches, he wouldn’t have the energy to dance. Aha. A few days later, I was on a walk with another friend and our young sons. It was excruciating for me to move my body, but I really wanted to be there, so I pushed through. It was exhausting and it was the last straw. I want to enjoy my life as much as I can, so if that means I use a mobility aid, then that is what I will do. I am totally done making things harder on myself for fear of what I or anyone else thinks about what it means to use a mobility aid. Rolling dream revived… The next day I dragged myself right into a sporting goods store and bought myself an electric scooter (in 2020, it is now socially acceptable for adults to scoot). When I got it home and tried it, I found it too hard to maintain my balance on it.So, I swallowed my pride and went to the home health store and bought myself a rollator, a walker with wheels. I have only had it for a couple of days but it is already making life totally easier and it has this handy basket to transport things around. I even mustered up the courage to bring the rollator to a course I took on the weekend. I parked it beside my chair and used it when I needed it and didn’t when I didn’t. I didn’t worry if other people found that confusing. My body can move sometimes and other times not. That’s what’s happening. It is funny how age or pain or something else finally wears away the neural pathways in the brain for the thought: “Oh no, what will they think of me?” Or maybe those kinds of thoughts are stored in the substia nigra, the part of my brain that is apparently in shut-down mode. If I could only find a time portal leading to my past self, I would shout into it: “Hey Nicole,Using a mobility aid doesn’t mean anything.  It does not mean you are weak or you are letting your illness “win.”  It is not a tragedy. You don’t have to use it all the time and you don’t have to explain. Just roll!” In conclusion, don’t be afraid to use a mobility aid! Love yourself enough to do what you need to do to enjoy life as much as possible. Happy Rolling!

Don't Be Afraid to Use a Mobility Aid for Parkinson's Disease

Fourteen years ago, way before I received my juvenile Parkinson’s disease diagnosis and my official blue disability parking pass, I thought I would use those shoes children wear with the wheels in the heels to get around. My right foot had this annoying tendency to drag with each step, so I thought it would be easier to roll. I imagined myself coolly gliding down the city sidewalk, bobbing in and out of pedestrian traffic. When I tried the shoes, I found the balance was more difficult than I thought. I had to lean back — way back, to tip myself onto the wheels in the heel of the shoe. My adult body didn’t trust that I wouldn’t continue to fall back onto the hard concrete of the sidewalk. End of rolling dream number one. My next grand idea was to get one of those kick scooters. I imagined myself kick-scooting breezily along the sidewalk on my urban commute, wind in my hair. But my inner critic said, “An adult on a kick scooter? Come on Nicole, that would look silly.” Sigh. If only I had had the courage. End of rolling dream number two. My initial optimism for rolling lost, I resorted to dragging my stumbling, spastic body around and hiding the difficulty I was having. I used a cane sparingly, mostly when I didn’t think I would see anyone I know. I didn’t know how to explain why I could move easily at some times and others not. I thought people would be confused if I used a mobility aid sometimes and other times not. Recently, my friend told me about seeing a circus performer who performs using crutches. When she visited him backstage, she was surprised to find that he was using a wheelchair and said so. He told her that using the wheelchair is what allowed him to conserve his energy so he could dance using the crutches on stage. If he spent his whole day dragging himself around on crutches, he wouldn’t have the energy to dance. Aha. A few days later, I was on a walk with another friend and our young sons. It was excruciating for me to move my body, but I really wanted to be there, so I pushed through. It was exhausting and it was the last straw. I want to enjoy my life as much as I can, so if that means I use a mobility aid, then that is what I will do. I am totally done making things harder on myself for fear of what I or anyone else thinks about what it means to use a mobility aid. Rolling dream revived… The next day I dragged myself right into a sporting goods store and bought myself an electric scooter (in 2020, it is now socially acceptable for adults to scoot). When I got it home and tried it, I found it too hard to maintain my balance on it.So, I swallowed my pride and went to the home health store and bought myself a rollator, a walker with wheels. I have only had it for a couple of days but it is already making life totally easier and it has this handy basket to transport things around. I even mustered up the courage to bring the rollator to a course I took on the weekend. I parked it beside my chair and used it when I needed it and didn’t when I didn’t. I didn’t worry if other people found that confusing. My body can move sometimes and other times not. That’s what’s happening. It is funny how age or pain or something else finally wears away the neural pathways in the brain for the thought: “Oh no, what will they think of me?” Or maybe those kinds of thoughts are stored in the substia nigra, the part of my brain that is apparently in shut-down mode. If I could only find a time portal leading to my past self, I would shout into it: “Hey Nicole,Using a mobility aid doesn’t mean anything.  It does not mean you are weak or you are letting your illness “win.”  It is not a tragedy. You don’t have to use it all the time and you don’t have to explain. Just roll!” In conclusion, don’t be afraid to use a mobility aid! Love yourself enough to do what you need to do to enjoy life as much as possible. Happy Rolling!

Don't Be Afraid to Use a Mobility Aid for Parkinson's Disease

Fourteen years ago, way before I received my juvenile Parkinson’s disease diagnosis and my official blue disability parking pass, I thought I would use those shoes children wear with the wheels in the heels to get around. My right foot had this annoying tendency to drag with each step, so I thought it would be easier to roll. I imagined myself coolly gliding down the city sidewalk, bobbing in and out of pedestrian traffic. When I tried the shoes, I found the balance was more difficult than I thought. I had to lean back — way back, to tip myself onto the wheels in the heel of the shoe. My adult body didn’t trust that I wouldn’t continue to fall back onto the hard concrete of the sidewalk. End of rolling dream number one. My next grand idea was to get one of those kick scooters. I imagined myself kick-scooting breezily along the sidewalk on my urban commute, wind in my hair. But my inner critic said, “An adult on a kick scooter? Come on Nicole, that would look silly.” Sigh. If only I had had the courage. End of rolling dream number two. My initial optimism for rolling lost, I resorted to dragging my stumbling, spastic body around and hiding the difficulty I was having. I used a cane sparingly, mostly when I didn’t think I would see anyone I know. I didn’t know how to explain why I could move easily at some times and others not. I thought people would be confused if I used a mobility aid sometimes and other times not. Recently, my friend told me about seeing a circus performer who performs using crutches. When she visited him backstage, she was surprised to find that he was using a wheelchair and said so. He told her that using the wheelchair is what allowed him to conserve his energy so he could dance using the crutches on stage. If he spent his whole day dragging himself around on crutches, he wouldn’t have the energy to dance. Aha. A few days later, I was on a walk with another friend and our young sons. It was excruciating for me to move my body, but I really wanted to be there, so I pushed through. It was exhausting and it was the last straw. I want to enjoy my life as much as I can, so if that means I use a mobility aid, then that is what I will do. I am totally done making things harder on myself for fear of what I or anyone else thinks about what it means to use a mobility aid. Rolling dream revived… The next day I dragged myself right into a sporting goods store and bought myself an electric scooter (in 2020, it is now socially acceptable for adults to scoot). When I got it home and tried it, I found it too hard to maintain my balance on it.So, I swallowed my pride and went to the home health store and bought myself a rollator, a walker with wheels. I have only had it for a couple of days but it is already making life totally easier and it has this handy basket to transport things around. I even mustered up the courage to bring the rollator to a course I took on the weekend. I parked it beside my chair and used it when I needed it and didn’t when I didn’t. I didn’t worry if other people found that confusing. My body can move sometimes and other times not. That’s what’s happening. It is funny how age or pain or something else finally wears away the neural pathways in the brain for the thought: “Oh no, what will they think of me?” Or maybe those kinds of thoughts are stored in the substia nigra, the part of my brain that is apparently in shut-down mode. If I could only find a time portal leading to my past self, I would shout into it: “Hey Nicole,Using a mobility aid doesn’t mean anything.  It does not mean you are weak or you are letting your illness “win.”  It is not a tragedy. You don’t have to use it all the time and you don’t have to explain. Just roll!” In conclusion, don’t be afraid to use a mobility aid! Love yourself enough to do what you need to do to enjoy life as much as possible. Happy Rolling!

Parenting With Parkinson's Disease

I knew parenting was going to be harder for me because of my Parkinson’s disease, but I really had no idea. It’s one of those things, you can never know what it is really like until you are in it. When I first held my son in my arms at 2:52 a.m. on that rainy July morning, my heart swelled with a love I had not known was there. I clutched his tiny body and promised him that I would do my very best to take care of him. The first 18 months, I devoted all of my resources to taking care of him. I went to bed at 7 p.m. when he did so I would be able to get up for the nighttime feedings. We spent much of the first four months at home. I diligently stuck to a nap routine. I wasn’t the mom pushing a napping baby in the stroller on a walk or at the mall. If he was sleeping, I needed to sleep. I would often lay down on the floor of his room at the base of the baby swing. I never knew if he would wake in one minute or five hours, so I would repeat to myself: “I am fully rejuvenated in one breath” and hoped I would be ready when he woke up. As he got a little older, we ventured out to our library Parent and Baby class. I would overhear other moms talking about going out for coffee after class or hitting the grocery store on the way home. These simple activities seemed utterly impossible to me. It was all I could do to get him back in the stroller and get us home. I recognize that part of my challenge is mental and partly physical. I did not have full confidence in myself as a parent because I have this body that may suddenly start shaking, spasming and dragging. When my son was about 2 years old, I took him to the city’s splash park — an accessible playground with little water features. It was a major mental and physical feat for me. I felt like a total champion. An outing that would be a typical occurrence to other parents was a major celebration for me. I can see that my family’s experience is different because of my chronic illness. We seem to do less than other families at a slower pace. We stick closer to home. We mostly spend time with each other. It is hard to be with other families because I just can’t keep up. This lifestyle can be boring, isolating and at the same time allows us to be more connected to each other and to cherish more of the simple things in life. I don’t know what kind of parent I would have been without Parkinson’s disease. I’d probably in the fast lane like many other families, busy doing several activities each day, rushing from one place to another. I am grateful for the pace of our lives, for our time together and for our closeness to our family. Every day my son encourages me to get out of bed, move and be a part of life when my body would rather not. I am blessed and grateful to have the time and the support to be able to cherish this journey. A few ways to make parenting easier with a small child: Have a safe space for you and your child. Make sure it is very well baby or toddler proofed so you don’t have to intervene so much to avoid injury or damage. Allow your child to develop the skills to play independently. Encourage independence to lessen your workload. Use your resources. Grandparents, family, neighbors. Be OK with slow. Those days when I am not well enough to escape the boredom by going out are when something amazing happens. This parenting thing has been a real journey — a journey where I don’t have a map and I’m not really sure where I am going or how to get there. Every time I think I know the path, something changes and I have to start again. I am on this journey with an unpredictable body that gets slow and freezes at various intervals, loses stamina quickly and shakes uncontrollably. My life has a slower pace which has made this journey different, challenging in some ways, blessed in others and all of it cherished.

Your Presence Is the Best Gift This Holiday, Regardless of Your Health

It’s December 14 and I’m at the mall in a giant line to pay for a pile of presents I have been assured by my family members no one needs. My Parkinson’s disease symptoms are in full force. My muscles are so stiff I can barely shuffle my feet forward as the line advances. I clutch the edge of the display shelves that delineate the line to keep my balance. I consider how ridiculous this is. I maintain my patience while I wait so I don’t stress myself out and make my symptoms worse. I vow to come up with a better way to show my appreciation for my loved ones next year. As a person with a chronic illness, time and energy is precious. The last thing I want to do is spend time at the mall in lines buying things people don’t really need and may not even want. I want to show love and appreciation for my loved ones. How can I do so with the resources I have? What can I do that would be a true gift to someone else? Don’t get me wrong, I like the excitement of shiny wrapped packages. But in the realm of gift possibilities I consider, I land on a different option. Instead of spending 45 minutes at the mall trying to decide on something that will show my love and appreciation in a cost-effective manner, I could spend 45 minutes showing my love and appreciation directly by interacting with a real person. Isn’t time the true gift? I’m not always great or reliable with outings and events, but I can make a phone call, send an email, check in, show interest and share some of myself. Having a chronic illness can be very lonely. Sometimes I feel so low and tired, I don’t really feel like talking. I feel weird and misunderstood. I get wrapped up in my struggles. Loneliness is a health risk factor. Giving to others has health benefits. Could showing appreciation to my loved ones by making a phone call, showing true interest, making a connection be a gift that gives twice? This makes me think of my friend Heather. She was a person who made her presence, her attention, her sharing and her very self a gift. She died in 2009 at the age of 33 when inflammatory breast cancer spread to her brain. She was the kind of friend who would call me three times a day just to check in or tell me about her day. If she was buying underwear, I would know about it. She was generous in sharing herself and showed interest in the nitty-gritty details of my life. I was privileged to be admitted into the intimate process of her dying. Letting me into this difficult experience in her life, sharing her true emotions and letting me see her imperfections was truly a gift. Even when she was sick and dying of cancer for the last two years of our friendship, she gave her attention, her interest, her awareness, her presence, her experiences, her thoughts and her emotions. She gave by asking me to be with her. I hate to admit that sometimes her generous friendship was too much. Sometimes I felt overwhelmed by the calls and the requests to be a part of her activities. But now that she is gone and has been for over 10 years, the hole that she left in my life is still enormous. Maybe it is a sign of the times, or maybe I just have isolated myself, but it seems like people aren’t that generous with themselves anymore. I miss Heather terribly. I miss how present she was in my life and I in hers. How I mattered to her and she mattered to me. I remember a few of the material gifts Heather gave me — a stuffed Cougar she gave me before she died for my future 30th birthday and a painting she made for me. Mostly, I remember her presence in my life, her care, her interest and how she made me feel like I mattered to someone. This is a true gift that anyone in any state of health or ability can give.

Bruce Ballard

What I Do to Stay Healthy With Parkinson's Disease

A few years ago, the Parkinson’s Foundation published an online article titled “Improving Brain Function with Exercise, Connectedness and Creativity.” (But it’s no longer on their website…oh-oh…oh, well.) I pasted two sentences from the article into one of my blog posts, and have been using them as guiding lights as I live my life with PD. Here they are: “…there is now scientific evidence to suggest that certain activities — exercise, social connectedness and creativity — may not only be therapeutic for Parkinson’s symptoms, but may actually change the brain.” In other words, “…we now know that in addition to your medications, there are some activities that may ease your motor symptoms, improve your quality of life…and perhaps even change your brain.” The Parkinson’s Foundation wants Parkies and their caregivers to offer the public at large their “keys to PD” – tips on what they do to cope with the disease and to ease or delay the burdens of yet another symptom. So I will offer my three keys. In a nutshell, they are exactly what the original article called for: Physical Exercise Social Connectedness Creativity Let me elaborate on each one. Physical Exercise I have a lot to say here, and I’ll support it with pictures and video. Basically, since receiving my diagnosis in 2012, I’ve exercised a lot and would like to do even more. What kinds of exercise are we talking about? Let’s display them all! Swimming: In addition to swimming laps in our town pool, I compete in open-water swim races and I race shorter distances in a pool. Example 1: Here I am in the ocean at Coney Island, at the start of a one-mile race called “Grimaldo’s Mile.” You can easily spot who I am: I’m standing a little to the left and waving my arms around like I’m a back-up dancer in Madonna’s “Vogue” video. Example 2: I swim the 50 meter freestyle at last summer’s Gay Games in Paris. I’m in Lane 6 with the green cap. If I had swum two tenths of a second faster, I would have won third place for my age group. (In this heat I’m mostly swimming against younger guys.) Running : In the warmer weather I run a two-mile course along the historic Croton Aqueduct trail near my house. It’s usually just me on the path, plus maybe some deer or some wild turkeys. The deer bound off into the forest when they see me coming, but the wild turkeys just move a few feet off the path and let me pass. Weight Training : I do free weights and machines. I don’t know why I look so serious in this picture. Spin Bike : I tend to do an entire hour on the spin bike, pedaling non-stop at a cadence of 100 revolutions per minute while listening to disco music from the 1970s and 1980s. Ping pong : I’m just a beginner at this sport, and I find it makes me use my mind and my body in brand new ways. The clip below is from a recent private lesson, where we’re just volleying for warm up. Hiking: My husband and I live in the Hudson Valley, which has plenty of hiking trails and mountains. Here are some snapshots from when we climbed the rocky cliffs at Breakneck Ridge. Walking Manhattan: When I go into the city for doctor appointments or to see a friend, I walk everywhere, and it adds up to miles. Here I am with fellow blogger Laura Kennedy Gould. Aside from sitting down for meals with her and another friend, I pounded the pavement from one destination to the next. Social Connectedness I work every day in two charter schools in the North Bronx, with about 700 kids and a staff of over 100. I interact with practically everyone – and almost everyone knows I have Parkinson’s disease. For an example of the kind of social interactions I have there, here’s a blog post I wrote a few years ago: Here’s something that happened to me this week.I work in a public charter school in the Bronx, and I was in a 5th grade science class while the children were doing internet research projects on cells. The teacher had created a master website list of all sorts of child-friendly sites that the children could access for their research. Each student was supposed to come up with a few questions pertaining to cells, questions that he/she was seriously interested in, then try to find answers by perusing the 50-odd sites that the teacher had compiled.I sat down next to a quiet, studious boy I’ll call “Alex.” He was at a laptop, clicking away and reading. He had hand written on a notebook page a few questions that he wanted to research, and he was scanning the various websites on the teacher’s master list for some answers.“What’s the question you’re most interested in?” I asked.“What are white blood cells made of?” he replied. “But I can’t find any information on the websites here.”He had some backup questions, so we started looking at other sites to find information to answer those. There was a webpage devoted to dandruff, so he clicked it open. We glanced through it and read the following paragraph: “Dandruff often runs in families. Men are a little more likely than women to get it. Other things can also make dandruff more likely, like having oily skin, stress, a neurological condition such as Parkinson’s disease, or a condition like HIV (human immunodeficiency virus) that harms the body’s immune system.” As soon as I saw Parkinson’s disease mentioned, I said to Alex, “Well, as you know, I have Parkinson’s disease, but this is the first time I heard that it puts me at a higher risk for dandruff!”But Alex didn’t know I had PD, and he asked, “What’s Parkinson’s disease?”I responded, “It’s a disease that attacks your brain, causing part of it to stop working.”Alex looked at me and said in all innocence and surprise, “But you’re so smart.”At which point I wanted to hug him.Instead, I explained to him that PD mostly affects how your brain communicates with your muscles, although there are other side effects, such as insomnia, loss of smell, and now… dandruff! I had to leave the class at that point, but the next day I sought Alex out again to find out if he had finally been able to find info on white blood cells (no, not yet), and if he had any questions on what I told him about Parkinson’s disease (no, not really, although he asked to see my hands in case I was having tremors. I wasn’t, however). Creativity My creative pursuits include writing poetry, writing blog posts, taking photographs, and playing a traditional Korean musical instrument, the kayagum. Here’s a combo of photography and poetry. Both poems are acrostic, meaning if you vertically read the first letter in every line you’ll come up with a word related to the poem. I took the pictures, too. P urple pupil peering O ut of an orange orb, P ray tell, what do you ponder as P eople important and pedestrian pause to peer at Y ou? F lowering member of the O live family, whose bright yellow is R eally such a welcome sight in early S pring that Y ou can’t imagine going back in T ime a few weeks and living without this H ot buttery I nfusion A gain. I also write sonnets (e.g., click!) and once I wrote 100 haiku about Parkinson’s (click!). And we’ll wrap things up with a little kayagum music. I studied the instrument when I lived in Korea in the 1970s and 1980s, and I still like to play it on special occasions. Some of the music requires incredible skill, as you have to bend the strings just so to produce the right pitch, the right slide and glide. You’ll see what I mean if you scrutinize my left hand in this video: The Fox Foundation blog has this to say in a post titled “Music as Medicine for the Mind”: “The emotional experience of hearing music can increase the release of dopamine — the brain chemical lacking in Parkinson’s disease. People with musical training have better memory, executive function (planning, problem solving, organizing, etc) and visuospatial perception (ability to determine the relationship of objects in space). While playing music, multiple different areas of the brain are activated and in the long run, this leads to an increase in the volume and activity of the corpus callosum — the bridge that allows communication between the two sides of the brain.” So those are my keys to living with PD. What are yours?

My Life Hacks for Living With Parkinson’s Disease

Inspirational, motivational, unachievable. We’ve all been called names and they’re just names, except I’m not in your ordinary situation. Last year, during a question and answer session at a Parkinson’s conference, a man walked out displeased with my Pollyanna-esque answer. In nine years with a visible tremor, I’ve been able to accomplish more than not just the average person with Parkinson’s, but the average person period. My grip strength isn’t that of your average woman; it exceeds the average male on both of my hands. I work full-time, take care of my daughter alone and push my body to extraordinary boundaries. I’ve been grappling for the last several years of the abundance of my abilities in a sea of disabilities. How am I able to do so much? Why me? What am I doing to create such a success? I wonder for no other reason than to spread love and if I may impart anything helpful, I genuinely wish to promote it. These are questions I cannot definitively answer. Apprehensive, I scheduled numerous speeches for this year, so I’ve had this helpless feeling, this was something to explore in order to better connect to my audience. I’ve asked my movement disorder specialist, who responded with, “You’re doing everything correct. You exhibit zero signs of the disease right now. I wouldn’t be able to diagnose you today. You may be getting better.” Wait… What?… Did he just say that?! Again I’m at a loss as to how… My neurophysical therapist sat with his mouth hanging open at my first consultation. My movement and balance charted excellent, but I came due to impinged shoulder pain and muscle deviations. “I don’t think I’ve ever seen anyone do that many laps in a gait test.” Again, why? And then he confirmed my thoughts… I believe I have found the perfect trifecta! The triple shot of sorts. These are my unscientific, unquantifiable and naturally occurring hacks to my Parkinson’s success thus far! 1. Faith: I am a Christian. While that is my faith, I won’t push my beliefs onto you. I will simply say that when you have faith, you have hope and when you have hope, you have faith. I have found when all else fails my God does not! When I keep Him in the forefront my blessings aren’t in my hindsight. What I must impress upon on you is I believe you must have faith in something bigger than yourself. Otherwise, what hope do you have after. What is the point of life if you have nothing more than yourself to live for. When you’re struggling and depressed and down in life, who is going to pick you up off the floor when you are alone. 2. Lifestyle: Exercise, healthy eating, supplementation, I believe this all plays a huge role collectively. Exercise and movement helps boost your dopamine production. The more you move, the more efficient your dopamine functions. You will need less medication, you will function better for longer and could improve your movement. Move it or lose it! Healthy eating just makes you feel better. Obesity is an epidemic in our First World Society. They believe most diseases begin in the gut. Eat healthy and move regularly and many diseases could lessen. And for supplementation, do your research and learn what is out there and then determine what you would like to incorporate into your daily regimen. I have my scientific and firsthand thoughts about a supplement called NAC. To read an in depth piece on that, here is the link. 3. State of mind: Here is the final piece of the puzzle that is key, and encompasses all of numbers 1 and 2. If you’ve got the first two, but are missing 3, you’re going to suffer more. Let me use the analogy of getting stuck with a needle. When you’re giving blood or getting that yearly flu shot, if you look at the needle going in, you’re going to feel it more than if you look away. When you focus on the needle piercing your skin you feel the pain before the needle comes in contact. Our minds are conditioned to protect us from things that will hurt us, however if we allow our minds to constantly expect pain we will inevitably live in pain. If all we wake up and think about is the fog, you will never appreciate the breaks of sunlight. I never heard voices, including my own, telling me “This is stupid!” It probably is, but I’ve never let that stop me! That is to say that pushing my body in ways that seem ludicrous are my way of taking back control from what this disease tries to take. I compartmentalize stressors and try to never dwell on the negativities or the possibly not guaranteed. I concentrate on what I can control and look up, giving away all that I can’t. Don’t give this disease more power than it should have! In talking to neurologists specializing in Parkinson’s through the country, those that live these truths, thrive! I found my purpose in life isn’t to just be the best mom I can for my sweet, precious 9-year-old, but to light as many people from within, including her as possible! There is much more grit in your fight when there is reason behind your why you’re fighting in the first place. In the end, I can’t promise you the same results as me in your journey against Parkinson’s or whatever you’re battling, but I do promise you peace. I promise you will be better off in the future than you are today. If you follow these guidelines I set forth, you can enjoy each and every day you’ve been given and you won’t look back in regret. You will find yourself happier and live a fuller life. I won’t promise you miracles, but I do believe you’ll feel them. I wish you all the best in your journey.

Coping With Self-Blame When You Have Parkinson's Disease

She had been at it for years. Criticizing me. Telling me I wasn’t good enough. Doubting me. I didn’t really notice how harmful it was. I thought it was just normal. It had been happening for so long. And then one day, I saw what was happening so clearly. It was during one of those hot yoga classes where people are crammed in with not much space between the mats. Nearly naked bodies drenched in sweat. I was working so hard, pulling on my poor tight hamstrings to try to force my crooked body straight. She made me go to that yoga class and a hundred others before it. She said if I just worked hard enough, I could get my body to be the way it is supposed to. Not all twisted, uneven and in pain from Parkinson’s disease. I never could do enough to please her. She was never happy. She kept pushing and pushing. And my poor body felt worse and worse. Maybe it was because of the silence, the intimate nature of the class or the stillness of mind that yoga practice can bring, but I finally realized what she was: A Big Mean Bully. She is the worst kind of bully. Because she lives in my own head. The Big Mean Bully is me. What I now know as the “inner critic.” The voice in my head that is constantly putting me down. She questions everything I say. She tells me that people probably don’t like me. She tells me it’s my fault that I’m sick. She insists I was doing something wrong and better find out how to fix it. I thought this voice was me and I believed her. Once I caught her, I realized all the damage that listening to her had done. I had isolated myself because she told me I acted weird. I had lacked courage to do things that would bring me joy for fear of not being good enough. I pushed my body really hard in yoga classes, causing more tension and strain. I couldn’t stop looking for answers, even though I already had them, because to her nothing was ever good enough. She doubted everything which kept me looking and looking for something that she finally wouldn’t criticize and doubt. I could never relax because she told me I had to keep working to make myself acceptable. In her own way, she was trying to help me be better, but was using an ineffective method. The good thing is that I do not have to believe my own thoughts. The inner critic is a pattern, a habit. I can change it. I became more aware of her and how she subtly influenced my day. I also started to question her more. When she would pipe in with her endless unasked for negative opinions about everything I am doing, I would say out loud, “I am doing just fine.” I started to think more positively about myself. Tell myself that I am great, awesome, magnificent. This may sound pompous but it really feels a lot better and leads to better outcomes than berating myself with criticism all day. I feel better about myself. I have moved forward with some creative activities I had alway wanted to do. I eased off on my yoga and exercise a bit. I recognized the more I push and strain, the more tension will be created in my body and the more my body will resist the relaxation and ease it really needs. I think this inner bullying is the worst kind because it is so subtle. For so long, when I didn’t really recognize her, I couldn’t figure out why I felt so bad about myself all the time. I was often grumpy, short, judgmental and sometimes downright mean. Bullies act out of their own inner pain. They bully other people to try to make themselves feel better. If we all made great efforts to counteract our own inner bullies and be kinder to ourselves, we won’t take out our pain on others. Then we would be kinder to each other. We might just feel a little better.

What I Wish I Knew When I Was Diagnosed With Parkinson's

My new neurologist’s hands are amazingly soft. I feel immediately at ease. Her caring and kindness are apparent through her gentle touch. I know she is accomplished: a professor and a clinic director. I feel hopeful she will solve the mystery of my perplexing symptoms that have been accumulating for almost 20 years. She holds my rough hand gently in hers and slowly rotates my wrist back and forth. She asks me to open and close my hands, tap my feet, touch my nose. “I suspect that you have juvenile Parkinson’s disease,” she says. Take our survey to share your Parkinson’s experience and what’s worked for you. Click here to take the survey. I look at my husband. He clutches my hand in his. Tears form in my eyes. The room spins and seems foggy. I had known for some time my previous diagnosis of dystonia was incorrect. I had not dreamed it would end up being something like this. “There is genetic testing to confirm it. The testing is expensive and it may not be covered,” she explains. Her voice reaches me in bits and pieces. “Progression is slow.” “May be able to work until my early 50s.” “Medications… surgery.” “It is very individual.” I feel encouraged by her compassion and her reassurance. Curled up in the passenger seat as my husband drives home, I do some googling on my phone on “juvenile Parkinson’s disease.” I glance at a few pages, then close the browser. Someone else’s experience with juvenile Parkinson’s disease does not have to be my own. I will chart my own course. There is not much more I wish I knew that day when I was diagnosed with Parkinson’s disease in 2012. I was 33 and had already experienced 19 years of unexplained chronic pain and illness. I have learned so much in that journey. However, I spent most of those years feeling really bad about myself because I couldn’t figure out how to feel better. If I were able to go back in time and I could give my younger self a message, this is what I would say: 1. You are not broken. Having an illness does not mean you are broken and need to be fixed. 2. Healing is a journey. Healing can happen even within the experience of having an illness. It is an individual journey. 3. Trust your intuition. There is so much out there that promises relief: diets, programs, supplements, procedures. Trust your intuition to guide you to what is right for you. This may take some practice to develop this skill. 4. Trying something that doesn’t help is not a failure. Not everything you try to take care for your body will be right for you. This is not a failure, just an experience on the journey. Is there anything you know now that you wish you knew then?Is there anything that you know now that you wish you had known when you first diagnosed? 5. You do not have to be ashamed of your illness. There is nothing that you have to be ashamed of. You don’t have to hide from your friends or colleagues. 6. Love yourself. Self-love is not something that you do, it is an attitude. See yourself in a positive light and try to make your inner dialogue loving instead of critical. 7. There is light in this tunnel. This is not the experience you wanted for your life. There will be a lot of pain, frustration, sadness and grief. This experience will also give you the opportunity to change, grow and learn. 8. You are amazing. For every time you get up despite feeling unwell and every time you decide to stay in bed; for every time you laugh and every time you cry, remember that no matter what you are amazing. You are a unique and beautiful individual and you matter.

Community Voices

instructions for living from an unlikely source

Ok, I don’t want to diminish the awfulness of having Parkinson’s disease: losing the brain cells that facilitate movement and good moods is not a barrel of laughs. But I’m really liking this list I came up with of the things I have had to do because of my #ParkinsonsDisease. It’s actually a really good set of instructions for living:

1. Slow down

2. Alternate activity and rest throughout the day

3. Let go of ambition

4. Don’t try to control everything

5. Appreciate little things

6. Keep life simple

7. Don’t multitask

8. Avoid stress and negativity

9. Eat well

10. Exercise

11. Continue to exercise my mind

12. Listen to music

13. Give myself regular doses of feeling good. (I extrapolated this instruction from the dose of dopamine that I take every four hours. Dopamine is the feel good neuro-chemical)

14. Focus on fun and joy.

15. Avoid toxins

16. Create a community of support

Looks like a list that could be applicable to anyone. Don’t let an illness force you to take care of yourself and find the joy in life. Do it anyways.