Big and Loud


Exercise. I got pretty good at exercising when I lost 60 pounds 5 years ago. I was disciplined and exercised 5-7 days each week.  I even walked a half marathon in 2015  It worked and I felt good. Then, as healthy life changes go, I kindof fell off the wagon. I managed to keep the weight off (most of it). But I wasn’t exercising as much as I had been.   At my second opinion appointment, the doctor told me that the only thing that has been proven to slow the progression of Parkinson’s is exercise. Every day. Three times a week won’t cut it. That was all he had to say. I have exercised every day since my appointment. I’ve even started getting up,at 5:45 so I can exercise before work.   I am finding that exercising before work gives me energy, makes me less stiff, and really lifts my mood. I have struggled with apathy, anxiety, and depression from the PD. Exercise helps level my mood.  When I exercised to lose weight 5 years ago, it was to be healthier and look better. Today I exercise as if my life depends on it. It does.

The other research I’ve seen says that singing loud can help people with Parkinson’s retain their voices longer. As a teacher and a mom, my voice is important.  I’ve created a playlist titled “Big and Loud” songs. When I’m alone in the car, I belt out these songs (note: Loud does not equal good). So far, my playlist has Breathe, Before He Cheats, Hell No, Hallelujah, Rise, Heartbeat Song, Stronger, Praying, I Hope You Dance, Fight Song, Chasing Cars, Defying Gravity, For Good, Shut Up and Dance, Pray for Me, Precious Lord, Take my Hand, Goodbye my Friend, Untitled Hymn, I can Only Imagine, Let It Go.  My list is growing. Singing in the car is cathartic. And it’s fun.

I am looking into exercises specifically for people with Parkinson’s like Delay the Disease and Big and Loud exercises. It’s hard to find classes that fit my work schedule. These classes are generally timed for older adults, retirees, in the middle of the day. Yet another challenge to being 46 with an older person’s disease. But just knowing that I might have a little bit of control over a disease that takes away much control, motivates me to press on.  Makes waking at 5:45 am completely worth it.




Bradykinesia. Bradyphasia. Bradyphrenia. Brady – Greek root for slow, slowness, delayed, tardy. Bradykinesia – slowness of movement. Bradyphasia – slowness of speech. Bradyphrenia – slowness of thought. Slow. I’ve spent my first 46 years of life not being slow. I am a multi-tasker, often doing 3 or 4 tasks at one time. People have told me I speak too fast. I was told in elementary school that my mind worked too fast for my hands which is why my writing wasn’t pretty.  Slowing down has always been hard for me. Now I don’t have a choice. Parkinson’s is forcing me to slow down. I can’t walk fast.  I can do anything fast with my right hand. No longer can I do 3-4 tasks without having trouble focusing. I can’t always come up with the word I want to say and this frustrates me no end. I am slower to answer questions.  I was smart. I still am smart, but everything is slower than it was.  Not being able to move, think, and speak as quickly as I once could irritates me, frustrates me, makes me sad. But on the other hand, slowing down has benefits. Less stress, more focus on the one task at hand, time to smell the roses.

I have gone from:

My candle burns at both ends;
It will not last the night;
But ah, my foes, and oh, my friends—
It gives a lovely light!


Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.

Slowing down is a change and not one I would’ve chosen, but ultimately it might be a good thing.


2nd Opinion


Today I went to the Cleveland Clinic for a 2nd opinion. I saw Dr. Ahmed who was wonderful. He confirmed my Parkinson’s diagnosis with a confidence of 90%. He also said that MSA stays in the differential for the next few years. I have read that as many as 20% of PD patients actually have MSA. MSA is a little scarier to me, but I can’t let my mind go there yet. One day at a time. He did say that exercise is the only thing that has been shown to slow the progression. Exercise everyday. So, as I take one day at a time, I need to make sure I exercise. Even when my apathy makes me not want to. He did confirm that anxiety, depression, and apathy precede motor symptoms by 5-10 years and he sees these in me. So, I will also work to correct the mood issues Parkinson’s causes me. While the diagnosis comes too late to save my marriage, it helps me to understand why I feel and act the way I do.

I will see a specialist at OSU in March who I hope to transfer my care to. The recommendations from yesterday are to look into starting on an agonist and potentially get a DaTScan which can diagnose Parkinson’s with 93% accuracy. He did go through the side effects to agonists: compulsive shopping, eating, gambling, hyper sexuality, narcolepsy…. I may trade one personality issue for another. That scares me, but I’ve asked my friends to keep an eye on me. One day at a time. One day at a time. God Grant Me the Serenity.

What I Can Still Do



Since receiving my diagnosis, I’ve been consumed with loss. What Parkinson’s has caused me to lose or will in the future.  I am grieving these losses and potential losses.  I’ve lost my ability to move quickly in the mornings, easily write my name, move with ease, multi-task, ability to think, at times my ability to care.   Ultimately, I believe it cost me my marriage. Grieving what I will lose:  my independence.

Today I decided to focus more on the positive (good way to start a new year), what I can still  do.  I have always loved ice-skating. Yes, at 46 -years old, I own my own Riedell figure skates. I worked at an ice rink in high school (don’t advise skating in shorts, even in the summer) and took figure skating as my PE elective in college. Given the bradykinesia and rigidity Parkinson’s is causing me, I wasn’t sure I could even get my skates on, let alone make it around the rink. I’m proud to say, this afternoon, I got my skates on (and even tied them myself) and made serveral laps around the rink.  Certainly not as pretty as it used to be, no skating backwards, bunny-hops or crossovers, but I got out there and skated.  And it was fun.

Personality Changes: apathy, anxiety, and depression, oh my!

Non-motor symptoms can and do precede motor symptoms by 5 years or more (some studies even say it can be up to 20 years).  Both readings and doctors have concurred that people with Parkinson’s display these symptoms.  I have definitely seen an increase in anxiety over the years (almost to the point of obsessiveness). And in hindsight, I can see the apathy. I knew I wasn’t feeling “right,” but didn’t know how to put it into words. And the kicker for me is that I think these symptoms contributed in large part to my recent divorce.  He doesn’t. So we ended at an impasse.

A brief history of my divorce after 25 years of marriage and then moving on.  After all, this is my story now, not his.  I have loved this man since I was 19 years old. But for the past few years, have not treated him well (nor he me). I guess I held out hope that we would make it through. But then, apathy and the hard work of marriage are not a good match.  The day of my diagnosis was to be divorce day. When I told him that I’d been given the diagnosis of Parkinson’s, he suggested that we put the divorce on hold to not add to the stress.  Twelve days later, he informed me that he wanted to move forward with the divorce. I argued to at least wait for the second opinion (the fatalist in me worries about the “what if this is something worse?”). I also tried the “in sickness and in health” part of the vow to no avail.  He refuses to believe that Parkinson’s can be blamed for my personality changes. I was relieved to have an explanation for the things I had been feeling and couldn’t describe.   Two very different viewpoints on the same thing. I have apologized for how I treated him and I know I have to move on. I cannot change the past. To his credit, he did offer to go to appointments with me. Just before he accused me of something I’ve never done and hung up on me.  No. Won’t be taking him to my appointments. I need someone with me who has my best interests in mind. Right now, he doesn’t. I miss him and wish he was on my side. But I know I can survive without him. I have to.

So back to the apathy, anxiety, and depression. Since learning how these can be caused by PD, I truly have felt relief. There were times when I felt like I was losing my mind. Now, when those feelings rear their ugly heads, I can beat them back by acknowledging their cause, my lack of dopamine. Some things that I’ve found that help me – exercise (make up for my lack of dopamine by increasing my endorphins), hot baths (especially now that it below 10 degrees outside), humor (if I can’t laugh at myself…), spending time with people who care about me, getting enough sleep.  When all else fails, take my anti-anxiety pill as needed.

I just wish I’d know the cause when these ugly monsters first began to destroy my marriage. But alas, there is no going back, only forward. So I step into my future, as a single woman (who also happens to have a neurodegenerative disorder) for the first time in 25 years.  Am I scared?  Absolutely.  But I am also hopeful. I have the most amazing kids in the world and a widening circle of friends who have stepped in to be my family. Apathetic, anxious, and depressed. But also hopeful, relieved, and determined.


This past year has been rough on many levels. My life has changed more than I ever imagined it would at 46 years old. In addition to the end of my 25-year marriage, I was recently diagnosed with Young Onset Parkinson’s Disease (a good friend told me that I MUST stop asking what else can go wrong). One upside is that at 46; I actually get to be “young” something. If I was pregnant, I’d be considered geriatric. The percent of people with Parkinson’s under age 50 is under 3.6%. Add to that the fact that I am female and my numbers drop to 1.6%. I’ve always had to be unique.

I’ve read and researched a lot about the disease and one of the best quotes I’ve seen is, “if you’ve met one person with Parkinson’s Disease… you’ve met one person with Parkinson’s Disease.” What Parkinson’s means for me is personality changes (apathy, increased anxiety, depression, mood swings, the one symptom of PD no one wants to talk about, preceding motor symptoms by 5 years or more), bradykinesia (slowness of movements, right now predominantly on my right side) and rigidity (stiffness). As of now, I do not have noticeable tremor. I have trouble with fine motor things like writing, brushing my teeth, buttons, beating an egg, turning a key etc. But overall, I’m not limited in what I can do. It also means that I am needing to learn (definitely an ongoing process) how to live day to day. Anyone who knows me, knows this is not how I live. I am a planner, sometimes planning years in advance. Parkinson’s has forced me to slow down and focus on the now (or at least try). I’m scared (I know enough to know what my long term future looks like). But I am also blessed beyond measure. I am an only child and both my parents are gone, but the people who have stepped up to be my family during this time are amazing.

I have an appointment scheduled for a second opinion at Cleveland Clinic January 8th. I need some one else (an expert in movement disorders) to tell me this is what I really have. I run the gamut from denying that what I have is Parkinson’s to the fear that I have something worse. I have a few “unusual” symptoms (although I am learning that there really is no “norm” when it comes to PD). I do not have a tremor, I have dystonia in my hand, and am having fasciculations (muscle twitches). Much depends on this diagnosis. The plan is that by spring, I will be living in my own for the first time in… ever. Am I scared? Absolutely. Will I be ok? I have to have faith that I will be.

I do have family history. My mom’s twin has had parkinson’s for 25 years along with another uncle and my grandfather. As a woman, I was more concerned with the family history of diabetes.  This diagnosis caught me off-guard.

Have chosen not to tell my kids yet. Between the trauma of the divorce and my middle child graduating, I need to wait. At least till things are more definite.

I am hoping that writing this will will be cathartic and might connect with other YOPDs out there. Topics to come: how much did PD impact my marriage and lead to my divorce; 2nd, 3rd, and 4th opinions; friends who became family; being my own caregiver; genetic testing and stem cell research; and more. Stay tuned. I appreciate any feedback (and if course I’ll take any prayers and good thoughts people are willing to send).

“Oh we never know where life will take us, I know it’s just a ride on the wheel.” ~ Linda Ronstadt