Conversations on Care is a Facebook talk show that brings together service providers, clients, and caregivers to help families better understand and cope with aging parents who have chronic care needs. This podcast is hosted by Julie Kollada, the founder and president of Open Arms Solutions, a senior care agency serving the Chicagoland area that specializes in inspired holistic dementia care.
In this article, you will find an exclusive dialogue about navigating the Parkinson’s journey with Jessica Bartsch, a highly credentialed community program manager for the Parkinson’s Foundation. When her father was diagnosed with Parkinson’s, she became inspired to support the Parkinson’s community and join in the hope for a cure. Jessica shares some critical information about available resources for those afflicted with Parkinson’s, what care for Parkinson’s patients entails, and information on how we can better support our loved ones throughout this difficult time.
What Is Parkinson’s?
Parkinson’s Disease is a neurodegenerative disorder that primarily affects movement control. The disease usually develops in seniors and is a progressive condition, meaning that the symptoms worsen over time. Common symptoms include:
- Involuntary tremors
- Muscle rigidity
- Impaired balance and coordination
- Bradykinesia (slowness of movement)
- Difficulty starting or stopping actions
- Reduced facial expression
- Speech and swallowing issues
- Cognitive changes
Parkinson’s Disease is caused by the gradual degeneration of nerve cells that produce dopamine in the brain. The resulting dopamine deficiency leads to the issues listed above. There is currently no cure, but there are various treatments and therapies designed to help manage the symptoms and improve the quality of life for those affected.
Parkinson’s Disease Statistics
One of the things Julie noticed over the course of her many years spent providing care for Parkinson’s patients with Open Arms Solutions is the surprising amount of people who are afflicted with this debilitating condition. It’s estimated that there are about 1 million people living with Parkinson’s Disease in the U.S. alone, with about 60,000 people diagnosed every year. It is the second most common neurodegenerative disease after Alzheimer’s and affects about twice as many men as it does women. Although the average age of diagnosis is around 60, there’s also young onset Parkinson’s Disease which affects people under 50 years old. These numbers raise the question, why aren’t there more discussions around Parkinson’s Disease care?
The Parkinson’s Foundation
The Parkinson’s Foundation is a national organization with headquarters in Miami, Florida, and New York City that seeks to make lives better for those affected by Parkinson’s Disease. The organization stands upon three main pillars: Research, Education, and Care. Its activities include researching better therapies for those afflicted, providing educational resources for the community, and facilitating better care for people with Parkinson’s.
Beyond building and nurturing a community around support for those with Parkinson’s and their family members, the Parkinson’s Foundation has created a reliable Global Care Network to make Parkinson’s Disease care more accessible. It has designated 54 medical centers around the world as Centers of Excellence, including Rush University Medical Center and Northwestern University Movement Disorders Center in Illinois.
The Parkinson’s Foundation can be reached at helpline@parkinson.org or 1-800-4PD-INFO (1-800-473-4636) Monday through Friday, 9 a.m. to 7 p.m. ET.
The Parkinson’s Journey: What Does It Look Like?
The Parkinson’s journey will look different for everyone. In Jessica’s case, her father lived with Parkinson’s for about 13 years. She was already in grad school for counseling before his diagnosis led to her study of Parkinson’s care and later involvement in the Parkinson’s community. Although it’s unlikely that you’ve found yourself in the exact same situation, perhaps her experience will prove useful to you.
The First Step in Your Parkinson’s Care Journey
Jessica believes that when faced with devastating news like a Parkinson’s diagnosis, the first thing you should do is ask, “What now?” For many people, it can take a year or more for the diagnosis to be confirmed. But once armed with that information, you can plan ahead.
In a moment of crisis, Jessica reached out to the Parkinson’s Foundation helpline. This helpline, which welcomes calls from those afflicted with Parkinson’s, their families, their friends, and healthcare providers, led Jessica to volunteer with the Foundation and eventually become a community program manager for the cause. The Parkinson’s Foundation remains an excellent resource for those newly diagnosed with Parkinson’s.
Educate Yourself & Your Family
Too many Parkinson’s patients are simply given a diagnosis and a prescription and sent on their way without the support they truly need. Luckily, this is changing thanks to initiatives that provide education around living with Parkinson’s and seeking care for this debilitating disease. One resource you may find useful is a packet that the Parkinson’s Foundation curates for those newly diagnosed. This packet includes an overview of Parkinson’s Disease, a letter from someone who lives with Parkinson’s, some key questions you should ask your doctor, and a brochure titled “Five Steps to Living Your Best Life With Parkinson’s”. The brochure includes guidance along the following lines:
- Think about what is most important to you and make an action plan.
- Find someone to talk to so that you’re not going through this alone.
- Create healthy habits—get good sleep, eat well, and stay active.
- Be active in whatever way you can.
- Find a doctor who is an expert in Parkinson’s.
The Parkinson’s Foundation provides numerous resources that are invaluable for anyone seeking support during this trying time, including this packet and their helpline. They can also help you find a Parkinson’s specialist near you or other local resources if you are struggling.
Seek Care & Ask Questions
There’s a lot to know when it comes to a diagnosis like Parkinson’s. The best way to navigate this uncertainty is by enlisting some professional help as you continue to ask questions and educate yourself on this condition. No two people’s experience with this illness will be exactly the same, so you want to work with a doctor and/or caregiver who is willing to give you individualized attention, create a custom Parkinson’s care plan, and answer any questions you may have.
Being a Good Caregiver
If you are caring for a family member with Parkinson’s, Jessica recommends that you help by validating their concerns, taking notes at their doctor’s appointments, and keeping a log of symptoms and questions as they occur to reference as needed. She also stresses the importance of taking care of yourself—caregiver burnout is a real and very serious problem that should be avoided at all costs.
Don’t Be Afraid to Seek Help
When struggling with an emotional drain like a devastating diagnosis, it can be hard to work up the courage to seek support. However, there are so many organizations that are dedicated to helping you and your family through this. For example, senior care companies like Open Arms Solutions in Chicago.
At Open Arms Solutions, it’s our mission to help you through your journey of dealing with Parkinson’s Disease and give you peace of mind knowing that your loved one is living the best life possible. We employ compassionate, highly trained caregivers who will give your family the personalized service you deserve and always have a live person available to talk to. If you’re curious about the Parkinson’s care we provide, contact us today. You can also visit our education center to learn more about senior care and why it’s important.
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