An interview with Ginger Ash, Advocacy on August 25, 2024.
Biography
My name is Ginger Ash and I live in Middle Tennessee. I am married to my amazing husband, Bill and we have 2 sons, Nolan and Evan and 2 daughter-in-loves, Cameron and Lela. We also have a grandson Finnegan and a granddaughter; Blakely. We have 2 dogs; Lulu and Gunter, a cat; Carolina, and 6 chickens; Rose, Blanch, Dorothy, Sophia, Laverne and Shirley. I am a retired Elementary School Principal who now helps with our family business. I love to hike and camp at state and national parks.
Please tell me a little about your background.
Just to give you some background…..August of 2023, I started noticing some memory loss and some confusion daily. I’d forget things, ask the same questions over and over, couldn’t come up with the right word, forget conversations, leave the gas stove on, etc. Thankfully, I noticed these signs in myself, but my family were noticing them as well. I made an appointment with my doctor who confirmed my issues were symptomatic of Early-Onset Dementia. She first wanted me to have a CT scan to make sure it wasn’t a brain tumor; that was a long 2 weeks waiting for those results. Thankfully, my CT scans were clear. She then referred me to a neurologist.
After meeting with my neurologist, he tentatively diagnosed me with Mild Cognitive Impairment until other tests could be done.
He wanted me to do a sleep study–came back clear!
He wanted me to have a Neurocognitive Test– took from September until February to get in for the test. It was a 4 hour test of puzzles, tasks, problem solving, memory activities! It was long, exhausting and honestly, I came home and slept and cried most of the afternoon. I felt like the stupidest person in the world. I then had to wait 2 weeks to get the test results (more on that later!)
In between all these appointments, I developed a hand and head tremor right before Thanksgiving. We kind of blew that off due to the stress of the holidays and stress from the unknown. The tremors would happen periodically usually when I was tired, upset or stressed.
THEN…the tremors started coming on more frequently and without warning or being provoked by stress, etc. That is when we started getting really worried.
Jump ahead to the end of February when I got my neurocognitive test results back….this is what was shown:
Significantly Below Normal: Auditory (Immediate and Delayed) Memory Loss
Significantly Below Normal: Executive Functioning Skills (following a recipe, problem solving, etc.)
Profound/Severe: Weakness in my dominant hand and grip
Left that appointment feeling very defeated and confused!
March 14, 2024: Met with my neurologist. Discussed my symptoms, discussed my Neurocognitive results, and completed a battery of tests.
**DIAGNOSED WITH PARKINSON’S DISEASE**
Can you tell me more about your Advocacy?
My desire to advocate for PWP came from my husband; honestly, I just wanted to hide my diagnosis and not tell anyone outside of my family. He encouraged me to share with my friends and the community and to not live in silence and shame. With his encouragement, I started my advocacy by sharing through a Facebook post on my personal page. From there, I received such amazing comments from people telling me that I was an inspiration and so encouraging and that I would be an encourager to others. From there, I created my Instagram page, Faith_over_Parkinsons. I then started following every person I could find and making videos of my daily struggles and my daily wins. I told people that this page would not be all rainbows and unicorns. It has grown from there.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is to inspire, educate and encourage others who have Parkinson’s Disease as well as to educate people on what to look for within themselves and family members.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
That while I have daily struggles and days where I just want to curl up and stay in bed; I don’t. I get up and I run 3-5 miles every morning, and I work out every evening. I find JOY in everything and in every experience I can.
What effect can your Advocacy have on an individual with Parkinson’s?
That you can LIVE a good and full life with Parkinson’s. It is not a death sentence; I can live with it. I also want people to see my determination to not retreat into my disease. There is room for Joy, even with Parkinson’s.
What would you like to see as a future goal for your Advocacy?
I would love to be more active with the Michael J Fox Foundation as well as the Parkinson’s Foundation. I am just working to get my name out in the advocacy community to see where I can plug in at.
What events do you participate in?
Right now, since I am so new to the advocacy part, I have not participated in any Parkinson’s related events. I am looking into getting involved very soon.
How does this also assist the caregivers?
I just think that my videos and posts on my Instagram page can assist caregivers by giving them an honest and real-life look into what my daily life is like. Symptoms that I have and how I deal with those symptoms; what helps and what doesn’t help.
How can someone get in touch? What is your website?
People can reach me through my Instagram page Faith_over_Parkinsons. I am always available through the messaging platform. I don’t have a website or a Facebook page specifically for my Parkinson’s journey.
How can others also become advocates for awareness?
I think other scan become advocates by just putting themselves out there; there is no right or wrong way to do that. Just be honest and vulnerable in your journey.
In your opinion, what is the key to effective advocacy?
Honesty and vulnerability; just putting yourself out there.
How can we better fundraise to support a cure for Parkinson’s?
Continued advocacy and reaching out to legislatures to help push our cause forward. We need a cure and we needed it yesterday. Too many people are suffering with this horrible disease. We also need to make strides in healthcare for people with Parkinson’s. My insurance wouldn’t pay for some of the tests my neurologist wanted done; so, we had to pay out of pocket. That shouldn’t be the case.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I rely on exercise and healthy eating to help support my daily living. I run 3-5 miles every morning and then do cardio and strengthening and conditioning in the evenings. Exercise is so good, not only for my Parkinson’s, but for my mental health as well.
I also eat very healthy; I eat only organic and farm-raised meat and produce. I have eliminated all dairy products from my diet as well as really limiting sugar and carbs. My husband and I eat vegetarian at least 4 times per week as well.
Why should people who don’t have Parkinson’s care about this?
I think people who don’t have Parkinson’s can care about this to support and encourage people they may know that has Parkinson’s. It’s also a way to look at family and friends within their family and know the signs and symptoms to look for.
Have you had any family members or relatives affected by Parkinson’s disease?
I did not have any family members affected by Parkinson’s, which is why my diagnosis came as such a surprise. I always thought Parkinson’s was genetic…..it’s not.
If you had one song that would tell us more about you or represent your life, which song would it be?
“Unstoppable” by Sia
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
“Don’t let your diagnosis define you; you are more than Parkinson’s. You are loved and have a lot of life ahead of you. So, get out and enjoy it!”