This week we’ll hear from Melissa Rehm. She was previously diagnosed with Parkinson’s Disease, but that was changed to Ataxia.
Melissa Rehm here.
At age 41, I began a medical journey full of doctor visits, exams, and tests. After two years of searching, a diagnosis of Young Onset Parkinson’s Disease (YOPD) was found.
Receiving a label, of any sort, was a welcomed relief. The diagnosis has since been changed to Secondary Parkinsonism, Essential Tremor, Dystonic Tremor, and now Ataxia.
It’s easy to understand how a misdiagnosis can occur. The degenerative neurological disease family shares many of the same symptoms.
Little to no resources were found while trying to cope. Even to this day, public perception is nill.
There are many lessons I have learned over the course of ten years, but the most important one is that life is far from being over when diagnosed with a neurological disease of any label.
My hope is that others learn their ‘new normal’ while fighting for a cure.
In 2015, I started an online support group, Never Give Up PD, to share and learn tips with other People with Parkinson’s (PwP’s) and their loved ones. Today, it’s known as Parkinson’s International – Never Give Up (PINGU) with administrators living in Canada, South Africa, and the US.
In 2017, Parkinson’s International Foundation, Inc. was founded. The goal is to create awareness both locally and globally, promote education and advocacy, and empower those living with chronic illness to lead richer fuller lives.
Based in the greater Lexington area of Kentucky, Parkinson’s International is a nonprofit organization run by volunteers sharing this vision.
Thanks, Melissa Rehm, for sharing the journey you went through to arrive at your current diagnosis.
Please consider sharing your story – whether you have Ataxia, are a caregiver, friend, or relative. You may fill out the form below to get started.