My PD Story

My fight with Parkinson's began back in February of 2020. Unknowingly, I was having symptoms of one kind or another. Never once did Parkinson's cross my mind.

I woke up one morning with a twitchy left finger. I thought I slept on it. Surely it would go away, no. After some time, I saw a neurologist who diagnosed me with Essential Tremor. I took medication for it for about two years. It not only didn't help, but I then developed horrible cramping and constant wiggling in pain in my toes.

The neurologist then sent me to a Movement Disorders Specialist. I had never heard of such a doctor. When my Google search came back as a Parkinson's doctor, I knew I was in trouble. I met Melanie Stewart, Nurse Practitioner, soon after.

I remember sitting in the exam room. After what I call the "drunk test," Melanie leaves for what felt like a lifetime. Maybe 10 minutes in reality. She sits in front of me with my husband behind me and said, you have Parkinson's disease (PD).

At the young age of 47 is when the bottom fell out of my entire universe. All I could think was, what about my kids, what if they get it. I was very naive to PD. I was so afraid that I was soon going to die and break my kids' hearts. Horrible thoughts were always at the top of my daily list. The darkness started to trickle in because I had only known PD to affect older men. I had nothing and nowhere to turn for clarity, direction, hope.

Melanie suggested support groups. No thank you, I didn't want to see me in them. I didn't want to see the future. The dark kept getting darker.

Moving Day was coming up, and it was being held at my movement disorder center. Melanie suggested I go, see what it was about. I'd never done anything like it. It was all unknown and scary, but I agreed. I walked, met great volunteers and vendors. The energy was welcoming and inclusive.

Before that walk was over, I signed up as a volunteer. I was hooked! I needed that energy, that environment to pull me out of the hole I was digging. Had it not been for Moving Day and all that it had to offer at the time, I'm not certain where I would be today.

It's been five years now since I have been a part of Moving Day. I thank the universe every day for all of it.

Although I love what I do with the Foundation, my challenges are never gone. The worst challenge for me is bedtime. Turning over in bed is nearly impossible and extremely frustrating. When I'm in between my meds is also a nightmare for me. The shuffling when I walk, the effort it takes to breathe. Unbearable! I have to stop until my medication hits again.

Did I ever have a turning point? YES! ABSOLUTELY! Being a part of The Foundation and Moving Day has helped redirect my path on a national level, but it has also given me another opportunity to help locally with The Parkinson's Connection of Central New Mexico.

With my experience with both amazing organizations, my heart feels lighter again. Helping others like me both nationally and locally really has made all the difference.

Having Parkinson's is certainly not a picnic; however, it's also not the end of the world like I once thought. With the help and strength of my fantastic husband, I am able to help others and help myself. My husband has always been my strength but getting the diagnosis broke him. His thought process and goal changed. From time to time, I remind him that I am NOT as fragile as he may think. Because of our stronger connection, I feel confident to be in my skin again.

Let's not forget my exercise classes and all the movement I plug into my days. I feel mentally and physically healthy again. Exercise has always made me happy, and it’s great that I am able to do that again. I know when I keep moving that my brain gets stronger to keep fighting. I am hopeful that I will live long and strong with all these mental and physical workouts.

I will say, however, with all my exercise and great medications, most of my loved ones tell me I don't look like I have Parkinson's. GREAT, THANKS! However, I do have a huge support group to call on when I need it.

Make no mistake, having PD is no fun, and I will never it is easy. I will say that if you are new to the Parkinson's world, allow yourself to grieve, however that looks to you. When you are done, I will be here. You don't have to do any of the shaky journey alone!

Year after year, I look forward to Moving Day. So many wonderful people, volunteers and new friends. I just went to the Parkinson’s Foundation Volunteer Summit in Las Vegas, and I loved the experience. I would to do that again. I have also just completed my Parkinson’s Foundation Ambassador certificate and my Hospital Safety Training. I can't wait to learn more.

When I was diagnosed, if you had said the words "living well" to me, I would've slammed the door. Today, I can say I am living well. I live happy, healthy, strong, busy, determined and confident. All these things didn't exist for me.

Every day isn't rainbows and sprinkles, but it's also NOT darkness and doom. Life with Parkinson's is still doable and more fun when you are not alone.

From the bottom of my shaky heart, I thank you.

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