Ginger Ash is a former educator and retired elementary school principal from Tennessee who was diagnosed with Parkinson’s disease this year. Her journey began last August when she noticed issues with her memory and cognitive abilities, initially leading to a misdiagnosis of early-onset dementia. After a series of tests, she received her Parkinson’s diagnosis in March, prompting her to delve deeply into understanding the condition.
Despite the initial emotional toll, including feelings of depression, Ginger has turned her experience into a mission of advocacy. With the encouragement of her husband and a strong support system of friends and family, she now openly shares her story on social media, aiming to educate and inspire others who face similar challenges. Through her Instagram page, Ginger offers an honest look into life with Parkinson’s, focusing not only on raising awareness but also on providing hope and connection for fellow patients and caregivers.
So I am only five months out from my actual diagnosis. So this is very much a new thing for me, a new learning experience for me. I originally started my journey to a diagnosis last August, which I know for some people, that’s a very short period of time, because I know a lot of people deal with getting a diagnosis for a long time. But I started noticing back in August a lot of memory issues, forgetting to turn off the stove, forgetting to put my car in park, asking questions over and over again, kind of getting a little confused when I was out driving or whatever. And I noticed that within myself, but my family I did as well. And so I reached out to my general practitioner, who I love and know personally, and she’s like, yeah, let’s get you in, and let’s talk about what’s going on. They originally diagnosed me with early-onset dementia. She set me up to have, like, a CT scan to do, first to kind of eliminate maybe brain tumor-type things causing my memory loss. And so that came back clear. She then referred me to my neurologist, who I love, thankfully. I got in to see him, and he was like, well, I’m not ready to make any kind of diagnosis. I want to do some other things, you know? Yes, you’re showing signs of cognitive inabilities, but let’s do some things first. So he sent me for a sleep study because sleep can obviously affect your cognitive ability. The sleep study came back fine, which I knew it would. I don’t have any issues with sleep. He then sent me to have a neurocognitive test done, which took me about five months to get an appointment. It’s a four-hour test. It was a total nightmare. I’m an extremely smart person. I have multiple degrees, and I left that appointment feeling like the stupidest person on earth. It was terrible. In the meantime, though, between getting my referral for the neurocognitive test, it was actually right before Thanksgiving. We went through a stressful situation here within our family. We’re selling our home and property, and it was very, very stressful. And we were leaving to go out of town for Thanksgiving, and I started tremoring. So my right hand, which is my dominant side, started tremoring, and my head started shaking uncontrollably. We kind of dismissed it at that moment, thinking, well, I was under a lot of stress. We were trying to sell a home. We’re trying to get out of town for Thanksgiving. So we just kind of pushed it aside and thought, okay, well, we’ll visit it later. Then it continued through our Thanksgiving vacation. The tremors continued, the head tremors continued, and they were not instigated by stress. It was just daily, you know, doing things. And so that’s when we started to get worried. I went to have my neurocognitive test. I did not do very well on it. I have a lot of, I guess, below expectations on certain things, like balance, hand grip, memory, and executive functioning issues as well. So I had that test done. I went back in with my neurologist about a month later, and then that’s where we discussed the tremor situation. He ran some tests there in the office and asked for some other tests to be done. And then March 19 of this year, he gave me my official diagnosis of Parkinson’s. That’s when I started really delving into what is Parkinson’s because I really didn’t know what it was other than tremors. Nobody in my family had Parkinson’s, and so that’s when I started delving into it. So I am very, very new to the diagnosis and learning every day like everybody else is.
I was obviously very confused. I didn’t know what was going on, especially now with the memory loss side of it. My mother had had memory loss and dementia. So I was super aware of what to look for because I had witnessed it in her. When I started seeing those signs in myself, that’s what got me started. The tremors came out of nowhere. Honestly, the first time I had the tremor incident before Thanksgiving, me and my husband were in the kitchen and it terrified, it petrified both of us because we had no idea what was going on. I mean, I still get teary-eyed now thinking about how I felt at that moment because here I was trying to leave for Thanksgiving and then I’ve got this new, new thing happening. So, a lot of terrified, petrified, confusion, didn’t know what it was and what to do about it.
I mean, obviously, stress aggravates and exacerbates my symptoms for sure. Right now, what I’m dealing with is heat. Heat is a trigger for a lot of my symptoms. I live in Tennessee, and it’s very humid and very hot here. I’m actually dealing with a lot of temperature regulation where I’m having trouble regulating my body temperature and I’m sweating profusely. When I get hot or my body temperature goes up, my symptoms are going to be exacerbated. My balance, I’ll end up falling, tremor more. I have more confusion during those times, but I am a very routine person, which routine has been fabulous for me. I’m glad that I was a routine person prior to my diagnosis. I get up at the same time every day, and I do the same thing pretty much every day. I’m retired, so I don’t have to get up and go to a job anymore. So routine has been very good for me. I also get up and I still run every morning at the park here in town, if it’s nice out. If not, I go to my local gym. I still run anywhere from five to 10 miles every morning. Again, I have to regulate my temperature with the weather here in Tennessee, and I still work out every night. Exercise has honestly been my saving grace. It’s what keeps me going every day.
My background is I’m a retired educator. So I was a teacher, and then I retired as a principal of a large elementary school. My whole life I’ve been advocating for children. And since I retired, I haven’t had that, you know, outlet. Advocacy has always been a part of my life. Now I’m just advocating for myself instead of for others. To be honest, once I got my diagnosis, I didn’t want to do anything. I think I kind of sunk into a little bit of a depression. I told my husband, I said, I really just want to stay at home and not tell anybody and just kind of keep it to myself. He is the one, he’s always been my biggest supporter, he’s the one who said, you cannot do that. He’s like, I know you. If you sink into yourself and you just stay home, you’ll never get any better. So he is the one who said, you need to tell people. You need to share your story. He said I know it’s going to be hard for you because you’re really putting yourself out there. But he said I think you’ll feel better. He said I think you can inspire people. And so I took his advice. I first started by sharing it on my personal Facebook page. I got so many comments from friends saying, this is fantastic. You’re going to educate and inspire others. You’re so encouraging. I got a few ‘’I’m sorry you’re going through this’’, which I don’t necessarily like because I don’t want people to feel sorry for me. So from there, I started my Instagram page and I just started putting it out there. I tell people, my Instagram page is not all rainbows and butterflies. You’re not going to get a happy, life’s great post every day. If you want to join my page, you’re going to see the good, the bad, and the ugly. I feel like I’ve done that. I’ve shared that. But I’ve also shared the good. My goal in advocacy is to not only help myself, but to educate and encourage other people who have Parkinson’s, but also to educate people who might be caregivers or may have people in their family that showing certain signs and they’re like, oh, yeah, Ginger told me this is a sign for Parkinson’s or whatever. So not only to advocate for people with Parkinson’s, but advocate for others to be aware because I didn’t know. I had no idea. I don’t have Parkinson’s in my family. I don’t know anybody with Parkinson’s. So just to be able to educate and hopefully encourage. I’m thankful also that I exercised prior to my diagnosis, because I know that’s hard for people who did not have an exercise or healthy routine to get that diagnosis and then be told, you need to get out and exercise. So I’m thankful that I had that background prior to my diagnosis.
I’m trying to think of how I want to put that out. And honestly, even now, there are times when I’m embarrassed by my condition. I think that’s probably normal for everybody who has Parkinson’s. If we go out to eat and I tremor, I’m still very, very embarrassed. Like, I don’t want people to see it. So I’ll, like, sit on my hand or try to, you know, hide it somehow. It’s made me realize that life is short and that I need to be out enjoying everything that I can because I don’t know. And that’s the thing with Parkinson’s, is it’s so degenerative. While I might be able to function now, am I going to be able to function next year? Am I still going to be able to get out and do the things that I love? I want to live in the moment as much as I can. I’m still struggling with it, honestly. I don’t know that you ever get past the struggle part of it, but talking about it helps me. I know that sounds weird, but it does. It helps me to share my story. I don’t put stuff on my personal Facebook page a lot, but I do share through my Instagram page. I have a very, very tight-knit group of friends that I lean on, other than my family, obviously, my greatest support. I have a really great group of friends, and I have a great group of church friends as well that I’ve shared my story with. And they’re such a good support, and I don’t know how people live without that support system.
I have people through my Parkinson’s page, my Instagram page, that I don’t know, but I follow them because they have Parkinson’s and they follow me. But they’ll message me, you know, and say, hey, what are you doing for this? Or I’m having a really bad day. I had a lady the other day. I don’t even know where she lives at, but she knows that I’m a Christian and I’m a prayerful person. And she asked for prayer because she lives by herself, and she was having a really hard depression day. Making those connections with people I don’t even know, but I’ve met them through having this condition makes me very happy that they reach out to me and that I can help support them.
I guess the only thing, and I feel like it comes through on my Instagram page, is research. Read as much as you can. Now, I will say for me, because I know my personality, if I research too much, I end up going down a rabbit hole that I don’t like. I did that when I first got my diagnosis, I started really digging into the research, and watching videos. It took me down a rabbit hole that I did not like, and it got me very depressed. I said I can’t do that. I only do minimal research because if I find something I don’t like, I internalize it. So people need to research. They need to reach out to other people, and they need to exercise and get a healthy diet routine. I mean, I cannot push exercise enough with people, and I know they may get tired of me pushing. You need to get out, get out in nature, get out and do this. Get out and do that. But that is the best thing I did for myself was to get that routine. You have to put little things in place for you during the day. Like, if I know I’m going to be outside running, I make sure that I stay hydrated. I always have water, and there are different things that you can buy to help with your body temperature. So I try to share those things as well. Get your sleep under control, start a good, healthy diet, and just reach out to people. Like, they can reach out to me. I love that stuff. I love talking to people and supporting. It’s funny, I’m meeting with a friend of mine that I’ve known for years. I’m having lunch with her on Friday. She reached out to me because she just got diagnosed with early-onset dementia. And she knows that I deal with some of the executive functioning and the cognitive side of it as well. And she’s like, I know you’re going through this. Can you meet me for lunch? So I love that. I love that. Reach out to people and don’t be afraid to. Like I said, anybody can message me on my Instagram page, and I would love to talk with them because I know that helps me.
I would totally, totally agree with that. Daily, I’m learning new routines and new things to help manage my symptoms because currently, I’m not on any kind of medication, which I’m thankful for. My neurologist didn’t think I needed anything at that time, and I don’t. I do have to go back to see him next month. But I’m managing my symptoms through other alternative ways other than medication because I’m not a huge medication person. Because prescription medications tend to help one symptom but cause other issues as well. So I’m not naive enough to know that I’m going to be able to avoid medications with Parkinson’s forever. But while I’m able to manage them on my own through things that I do, that’s the route I want to take. I think people need to know that. I think a lot of times doctors, and this is just my personal opinion, push, push, push medication when there are other things that you can do to manage your symptoms. I think people need to know that.
Exercise. I take a variety of different supplements. I’m working hard at learning how to rest and recover, which is not something that I’ve ever been very good at. I’m a go, go, go kind of person, and I have found out that I cannot do that anymore. My body shuts down after a certain period of time and I have to sit and rest and recover. I honestly think talking about it and sharing it with others helps me as well. So exercise, exercise, eat healthy. That’s my big thing.
The only thing, and this is what I try to tell people, is Parkinson’s disease is not a death sentence. You can live with it. You just have to find out what works for you. Because like you said, everybody’s Parkinson’s journey is different. You’re never going to find two people that have the same symptoms or their journey is ever the same. You have to find what works for you. There is so much joy in this world that I refuse to let my Parkinson’s define who I am. Now. I’m a work in progress on that, for sure. But, you know, I’ve got kids, I’ve got grandkids, and I’ve got things I want to do, and I will not let Parkinson’s define me. So find the joy in everything you do and grab it while you can. I guess that’s my biggest thing. And exercise.
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