Marion and Jeff Shields Journey with Parkinson’s

Welcome, friends, to a heartfelt narrative that unfolds in five parts, delving deep into the lives of Marion, Jeff, and their beloved companion, Lulu. Join us on a poignant journey as we navigate the highs and lows, the triumphs and challenges of living with Parkinson’s disease.

It’s been fourteen years since I found out I have Parkinson’s disease. At first, I didn’t know what it was, but I had this uncontrollable shake. I used to walk really fast, but suddenly people were passing me, and their strides were bigger than mine. Plus, I stopped moving my arms during walks.

That’s when I thought, “Maybe I should see a doctor.” At first, I thought it might be carpal tunnel or a gene from my dad. But the doctor said, “Nope, it’s Parkinson’s.” It hit me hard. The diagnosis was quick – he had me do a few things, like touching my nose and walking around, and he knew right away.

After that doctor visit, I was devastated. I didn’t even go back to work that day. I went home and stayed in bed until Monday. I didn’t know what to do. My husband said, “You need to tell your friends and family,” but I didn’t know how.

For months, I didn’t do anything. I kept thinking, “I can’t call my friends and say, ‘Hey, I have Parkinson’s.'” But one day, about six months later, I thought, “This is dumb. I’m miserable, and maybe
there are other people like me.” I didn’t know where to start, but I decided to look online. I was in the Washington DC area at the time, and later I moved to Florida, where I found Rock Steady Boxing. It helped a lot. Then, I found Neuro Challenge. I didn’t even know it existed until I joined the boxing group. It turned out
to be really helpful, and I got more involved. As time went on, I got stronger, braver, and even more confident. I came a long way from being in bed, hiding from the world.

As we embark on this journey, we invite you to share in their experiences, to offer words of encouragement, and to #BeTheOne who spreads hope to those battling Parkinson’s. Your support, your
kindness, your presence – they all make a difference.

Join us in raising awareness and fostering a sense of unity during the Giving Challenge on April 9-10.

Together, let’s make a difference in the lives of those affected by Parkinson’s disease. Follow along, share their story, and consider supporting us with a gift. Together, we can be the beacon of hope for those in need.

Years after my diagnosis, my husband Jeff began experiencing cognitive decline. Despite numerous doctor visits to understand his symptoms, it took a neurologist appointment to swiftly diagnose him with Parkinson’s Disease in 2023. This diagnosis was unexpected since Jeff’s symptoms differed from mine. While Parkinson’s primarily affects my movements, Jeff’s cognition was
predominantly impacted.

We have been married for 46 years and have always taken care of one another. Our love for each other shines through the disease. Some days are good, some are hard, but every day together is better than not.

Jeff’s diagnosis has contributed to a lot of my stress and was affecting my heart. My cardiologist told me I needed to alleviate some stressors, and this has really helped me in many ways. As a way to cope, I use Airtags on everything: Jeff’s walker, Lulu’s collar, the keys, etc. It makes me feel more comfortable with Jeff being alone or going for a walk independently. I can track these on my phone and know he has his
walker, our dog Lulu, and the keys all in one place.

I try to inspire Jeff to be positive and live well with Parkinson’s Disease. As his wife, I know him well and realized he needed to come to terms with his diagnosis himself. He had to find the “courage within himself,” as courage is essential in fighting Parkinson’s Disease. It was crucial for me to find ways to inspire him without appearing nagging, but rather as a source of understanding and support. Once
Jeff accepted his diagnosis and started attending programs and classes, he felt better and began joining me in these activities.

Another significant help was hiring a caregiver to assist us. By doing so, I received relief from constant driving to doctor appointments and the burden of meal preparation. The caregiver provided support with day-to-day tasks like scheduling appointments and engaging in programs, allowing me to focus on self-care, exercise, and managing my Parkinson’s. This enabled both Jeff and me to live better with the
disease.

Lulu has helped me in so many ways over the years. Lulu is 11, and I’ve had her since she was under a year old. She was a rescue who failed guide dog school. I found out about Lulu and fell in love. She wouldn’t be a guide dog, but she would be my service dog who can detect if I am going into Freeze mode before me. Freezing is something that people with Parkinson’s can experience. Essentially, I am frozen in place and have to find a way to unfreeze. Lulu helps detect the freezing, and she is most
important when she is with me near the pool, where I do water aerobics as excellent exercise for both my Parkinson’s Disease and my body. I am her main focus, but Lulu is so friendly and helpful to others.

Lulu comes to the class with me and keeps a watchful eye over me and the other attendees. One day, a lady fell, and Lulu ran right over and sat next to her until someone came to help!

Once Jeff was diagnosed, Lulu knew something was different. He started using a walker at home, and she now pays more attention to Jeff and goes for walks with him as well. Lulu will sit behind us if she thinks we may fall or freeze to make sure we are both okay.

Dogs give you a purpose in life. Everyone needs a Lulu. She is a calming presence, making you feel comfortable and supported. Another benefit for Parkinson’s symptoms that Lulu helps with is exercise.

She must go for walks, she must be fed, she needs attention, etc. This encourages the person with Parkinson’s Disease to get up, go outside, get exercise, care for something, and have companionship.

“Parkinson’s is a hard blow to your Ego.”

There is no roadmap to follow and you are at a fork in the road, you can either choose a positive or negative approach to your diagnosis and I have chosen the positive one.
At first, I thought of myself as a person with Parkinson’s. But now, I just see myself as a normal person who can’t do some things, like play tennis. When I went back to the neurologist after my diagnosis, he asked me what was hard for me. I said, “I can’t eat hot and sour soup. I love Chinese food, but my hands shake when I use a spoon.” I found a solution, though. I started putting the soup in mugs and just drinking it. Small victories like that made me proud.

I started realizing that other people with Parkinson’s have great ideas, too. For example, I learned about special sheets on Amazon that make it easier to turn over in bed. It’s things like that, which you might not know if you don’t talk to others going through the same thing.

So, I joined different activities to meet people who understand. Parkinson’s is weird, and it affects everyone differently. Sometimes, you just need to talk to someone who gets it. Neuro Challenge became really important to me. They offer everything for free, which is great. Even if you can afford to pay, supporting them helps others who can’t.

Neuro Challenge doesn’t overwhelm me with information. They keep me informed at a level I can handle. It’s like they’re saying, “Yes, you have Parkinson’s, but let’s figure out how to live with it.” That’s important. They’re not just about the problem; they’re about finding solutions.

I think it’s crucial to spread the word about the Neuro Challenge Foundation. They help people who are newly diagnosed find themselves again. That’s exactly what they did for me. They’re like the organization that says, “Yes, you have Parkinson’s, but let’s figure out how to keep living a good life.” And that was really important for me.