Embracing the Challenge: Unveiling the Hope and Humanity in Parkinson's Disease

Embark on a journey of understanding and empowerment as we unravel the complexities of Parkinson's disease, a condition that reaches beyond the grasp of old age to touch the lives of many. Prepare to be armed with knowledge and insights that could transform your approach to this neurodegenerative disorder, as MJ takes you through the nuances of Parkinson's progression and the myriad ways to uplift those in its clutches. Whether it's modifying a home to suit new needs or simply learning the art of patient communication, this episode is a treasure trove of guidance for anyone looking to stand in solidarity with those battling Parkinson's.

Feel the pulse of hope in our latest discussion where we celebrate the tenacity of the human spirit in partnership with Parkinson's.  MJ shares a tribute to loving others living with Parkinsons in a poignant and personal story while also sharing how to have and share a heart of resilience, strength, hope and love.  In this podcast, we'll explore the joy and purpose found in a community that's stronger together. Join us as we paint a picture of a future where Parkinson's is not just managed but conquered. 

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Chapters

• 1:02 Understanding and Supporting Parkinson's Disease
• 13:27 Hope and Progress in Parkinson's Fight

Transcript

Speaker 1: 1:03

Welcome to the Griot Journals Coming Home podcast, where we delve into the profound and often complex issues that shape the human experience. I'm your host, dr Mary Ann Jefferson, better known to you as MJ, and in case you haven't heard it today, to our military veteran family and wider community. Welcome home. Today we shift our focus to a matter of great weight and importance Part 2, on our coverage of Parkinson's disease. Did you know that at the time of this broadcast, nearly one million Americans are living with a diagnosis of Parkinson's and that the research suggests this number will surge to 1.2 million by the year 2030. These aren't just some obscure statistics or nuanced numbers. It's a wake-up call, a call to action. In the realm of neurodegenerative conditions, parkinson's now stands as the second most prevalent, trailing only behind Alzheimer's. Each year, nearly 90,000 individuals in the United States are confronting the challenges brought by Parkinson's. And Americans are not alone, because this disease knows no boundaries. Globally, over 10 million hearts and souls navigate the delicate, intricate and imposing terrain of this condition. And for those listening, who still believe that age ain't nothing but a number in this diagnosis, contrary to the thinking of many, it is not the sole arbiter in receiving diagnosis. While Parkinson's does often intertwine with the aging process. A surprising 4% of people are receiving their diagnosis well before reaching the tender age of 50. This challenges all of our assumptions about the swift transition of time. And for an even more nuanced view of this reality, according to the Parkinson's Foundation, research shows males are 1.5 times more susceptible to the grips of Parkinson's than their female counterparts, adding a distinctive hue to the intricate canvas of this condition. And so we've entered fourth into part two on our discussion of Parkinson's. But I don't want us to get lost in the numbers, because behind the numerical landscape are people, families and communities shaped by the far-reaching implications of Parkinson's. I'd like to thank you for joining us on this journey today of loving, learning and lifting as we explore the intricate facets of Parkinson's, and stay tuned for more profound insights from the Grio Journals Coming Home podcast. And once again, welcome home.

Speaker 1: 3:58

So what is Parkinson's? Parkinson's is a condition that affects the nervous system. It is a neurodegenerative disorder that impacts all aspects of movement. Now let's break it down in a way that we can all grasp. Picture your brain as a complex orchestra where each part plays a crucial role in keeping everything in harmony. With Parkinson's, some of those instrumental sections start to lose their rhythm. The result Trimmers, stiffness and difficulty with balance and coordination, incontinence and other digestive challenges, and even memory and intimacy.

Speaker 1: 4:37

Parkinson's is known by five stages of development or progression. In the first stage, you may notice mild tremors and difficulty walking on one side of the body, and in the second stage, symptoms worsen and affect both sides of the body. You'll experience difficulty moving and changes in facial expression is noticeable. In stage three, balance and coordination are impaired, vols are more common, movements are slower and speech problems begin to occur. In stage four, tasks become very challenging. Assistance is needed for daily activities like dressing, putting on shoes or cooking meals, or getting from one part of the house to the other. Walking may require a walk or a wheelchair. And in the final stage, stage five it's the most severe.

Speaker 1: 5:36

In this stage, the person may be bedridden or have dementia. Constant nursing care is required. Can they be maintained at home? For some people they can. This is a conversation that you'll need to have with your loved ones, your families and friends, and even your healthcare professionals. So what can be done? How can we support ourselves, as we love people with Parkinson's? Well, information is power. We need to learn about Parkinson's disease, its symptoms and potential challenges. We need to understand the condition and that help is possible and can be provided, and should be provided, along with a healthcare team to ensure maximum care. Communication is key, and maintaining open and honest communication with the person you're caring for and family and friends is important. Encourage them everyone to express their feelings and concerns in the way that best fits their communication styles.

Speaker 1: 6:40

Make modifications. A Parkinson's prognosis is not a death sentence. Change can help you better deal and cope with the things that are in front of you. The home environment may need adjustments, so we may need to rethink what it looks like on a weekly basis, and sometimes on a daily basis, depending on what the person's needs are. Installing handrails, grab bars and removing tripping hazards can create a safer living space. Mobility assistance we've talked about chairs and canes, but also eating utensils as well. You may need to adjust the kind of eating utensils that you use to take advantage of helping them with things that will ensure they have a grip on the forks, the pens and pencils, because sometimes their writing change is stark as the disease progresses. You may need to help them with other things that require fine motor skills, even brushing of the teeth or brushing of the hair.

Speaker 1: 7:51

Manage medications Parkinson's medications often have specific schedules Establish a routine for medication management and ensure that the prescriptions are filled on time. Running out of medication is no fun. It is important that when you start a medication regimen, that you keep up with it and healthcare professionals can help you with things that will help you to keep up with those using medminders, using your phone for timers and schedules and queuing others who are in your home. That these times are important and what these times mean to the person living with Parkinson's and with people around them. Be patient. Jargoning or jogging about these different challenges and instruments and mechanisms can be frustrating, but it is necessary and I promise you that a rhythm that you can all live with will occur. Seek professional help. Engage with healthcare professionals, including neurologists, physical therapists and occupational therapists, to provide comprehensive care and guidance throughout your experiences. These at home modifications, I think, are pretty clear, but some people will also need to deal with car adaptations. Depending on the individual's mobility, you may need to consider installing hand controls or choosing a vehicle with easy exit and entry.

Speaker 1: 9:19

Resist the temptation to take things away. More than likely, what is needed is alteration, not absence of familiar things and activities. In my experience, once you start taking things away, you literally diminish the life expectancy of those you love. Remember, people living with Parkinson's can live a long life. Ensure that every moment is filled with loving, lifting, learning and praise. It will be the little things that let every one of them surprise you and express gratitude for each new challenge and even crisis. And this is the difference between life and liberty, and sorrow, grief and bitterness. Remember, acceptance is the key.

Speaker 1: 9:59

Now, on communication styles we alluded to this earlier. Be patient. Allow the person with Parkinson's the time to express themselves, especially if they experience speech difficulties, and remember this is one of the characteristics that is marked by Parkinson's. Maintain good eye contact. Remember, nonverbal communication, such as maintaining eye contact, can enhance understanding and connection, and people with living with Parkinson's are looking to make those connections. They're looking for faces that are familiar, even as their familiar face is changing. Share understanding and empathy in each effort to communicate, use visual aids. Visual cues and aids may help in conveying informative information effectively. Caring for someone with Parkinson's disease requires dedication, patience and ongoing education, as we've already discussed, and by understanding the challenges and making the necessary adjustments in the process of time, caregivers can significantly improve the quality of life for those they love living with Parkinson's. Regular communication with healthcare professionals and support organizations is vital for staying informed and providing the best possible care.

Speaker 1: 11:27

In the tapestry of my life, loving someone with Parkinson's has become an intimately personal chapter, one that's reshaped my entire existence. The profound challenge I grapple with daily is the art of letting go. It's a paradox. Really, to truly embrace life, I've had to unclench my grip on what I thought I could control. Life's journey, as it turns out, demands that we release the illusion of a mapped out path and instead buckle up for the unpredictable ride of challenges, crisis and even constant change. Week by week, day by day, even moment by moment, I navigate this uncharted territory, and in these moments I find solace in my faith and the memories of those who exhibited extraordinary faith and patience. Their stories become a wellspring of strength for me. I draw inspiration from survivors, from the resilient figures in the Bible who, despite their own trials, pressed on with unwavering determination.

Speaker 1: 12:27

What I've discovered is a transformative shift in perspective, a willingness to view Parkinson's not as an adversary but as an unexpected partner in this journey, when we alter the lens through which we see it, releasing our fixation on a predetermined future and outcome, a profound peace becomes possible. It's a journey of acceptance, understanding that the key lie is not in resistance but in embracing the reality that unfolds In the face of uncertainty. I've learned that acceptance is my compass. It's a journey marked by a willingness to let go of rigid expectations, replacing them with a tender acceptance of each moment as it comes. This, I've found, is where the true essence of living resides. And in the distance, in the dance between surrender and acceptance, in finding peace amidst the unpredictability of life with Parkinson's. This is my story, my heart, my bear, navigating the twists and turns of love and acceptance.

Speaker 1: 13:27

In the shadow of this challenging yet transformative partnership, there is hope. Now, here's the anchor of hope. Researchers advancing, treatments are evolving and people living with Parkinson's are defying the odds every day. Organizations like the Parkinson's Foundation are leading the charge in not just managing symptoms, but also in the pursuit of a cure and support to make everyday living with Parkinson's filled with joy, purpose and meaning. Behind every statistic, there's a face, a family and a community of fighters who refuse to be defined solely by Parkinson's. So as you and I navigate this journey, let's focus on the stories of courage, the strides in research and the promise of a brighter tomorrow for those affected by Parkinson's disease. There is hope in the midst of this challenge and together we can create a symphony of support and resilience. Thank you for listening, god bless.