A Parkinson’s Diagnosis Has Hit Close to Home. Now What?

First, take a breath. Inhale, exhale. In these moments in life, your brain starts thinking about many things – arguably, too many things – and your heart is racing. To effectively and efficiently tackle “what’s next” a clear mind and organized plan is vital. All too often do I see people either 1) immediately go into business mode without taking time to emotionally process the diagnosis or 2) get stuck in analysis paralysis after the diagnosis. At some point, action needs to be taken and it is critical that you get a support system around you.

A support system may look different for different people and families, and that is quite okay. Some people’s support system may be predominantly family members and friends, while others may be surrounded by professionals (healthcare professionals, financial professionals, legal professionals, etc.). Regarding this, too, it is important for you to be willing to accept help. There are only so many hours in the day and if you are not careful with your energy and health, you may inadvertently not be your best self to care for your loved one.

As an Elder Law Attorney and a member of the Board for the Indiana Parkinson Foundation, I work with many individuals and families that are navigating an unfamiliar world following a Parkinson’s diagnosis. Therefore, I thought it would be helpful to create a list of things that you may consider after a Parkinson’s diagnosis hits close to home. 

Home Safety

Parkinson’s comes in many different shapes and size. It also differs depending on whether someone has been diagnosed in an “early stage” or if someone has been diagnosed and possible been showing signs for months, if not years. According to the National Institute on Aging, some of the symptoms of Parkinson’s include tremors, muscle stiffness, slow movement, and impaired balance and coordination. If you imagine trying to maneuver your house with some or all of these symptoms, it could expose you to many safety issues.

Of course, in tough times, we would rather be and stay at home rather than having to move into a long-term care community. To support this, though, it will critical to do an analysis of the home to ensure that it is set up to promote safety as symptoms surface. The Parkinson’s Foundation has a very helpful checklist to support you with this.

Therapy

There are many types of rehabilitation therapy that could help someone with Parkinson’s such as Physical, Occupational, and Speech Therapy.  The Parkinson’s Foundation’s website has a plethora of resources that include “why” someone should consider therapy and even various at-home practices that someone could implement. Furthermore, there is a Hotline with the Foundation that you could call and they can help find a therapist who is trained in working with people with Parkinson’s.

Another great resource, especially in Indiana, would be Memory Compass. The owner of Memory Compass, Jessie Hillock, helps individuals and families navigate issues as they relate to aging – especially those that are cognitively impaired. As a trained speech-language pathologist, many of her clients have Parkinson’s. Not only does she step in to help the individual with Parkinson’s, but she also helps their immediate support system with many tools and resources.

Support Organizations

As I have noted, there are national organizations, i.e. Parkinson’s Foundation, as well as local organizations, i.e. Indiana Parkinson Foundation, that help individuals and families through a Parkinson’s journey. As we know, Parkinson’s impacts not only the individual with the diagnosis, but also their spouse, children, immediate family, and/or friend. Through organizations like the Parkinson’s Foundation and Indiana Parkinson Foundation, you will find tools and resources for everyone.

There are local exercise programs like the CLIMB Program (with the Indiana Parkinson Foundation) and Rock Steady Boxing; there are support groups and educational resources; and even awareness events like Choose to Move (with the Indiana Parkinson Foundation), which not only brings awareness to Parkinson’s, but it also fundraises for the organization so they can continue to provide invaluable services to those impacted by Parkinson’s.

Legal and Financial

Do also make sure that your legal affairs and financial affairs are in good order. Here are a few questions that you could ask yourself to see if you need to seek professional assistance are:

  1. Do you have a Living Will Declaration, Advance Directive, and/or Appointment of Health Care Representative? If so, do they need updated?
  2. Do you have a Financial Power of Attorney? If so, does it need updated?
  3. Do you have a Last Will and Testament and/or Trust? If so, does it need updated?
  4. Do you have an organizational tool to provide information on your assets, debts, and bills?

It is very important to make sure you get your estate planning and financial planning in order, especially if symptoms worsen and get to a point of the individual with Parkinson’s not being unable to make their own legal and/or financial decisions.

Furthermore, it may be beneficial to specifically work with an Elder Law Attorney, which is an attorney that is experienced at working with individuals seniors and their related issues. A significant component of an Elder Law Attorney’s role is to help individuals and families navigate benefits such as Medicaid and Medicaid Waiver. These benefits are commonly utilized to assist in the cost of home health care and long-term care, even for those that have accumulated significant assets.

In conclusion, if you or a loved one has been diagnosed with Parkinson’s, please know that there are many tools, resources, and supports systems around you. As we all know, a diagnosis like Parkinson’s not only impacts the individual, but their immediate circle too. There are tools, resources, and support systems for everyone impacted. Like anything, it simply requires devoting some time and attention at discovering what they are and where they are. Though, if you find yourself strapped for time or limited on energy, an excellent one-stop-shop for many, many tools, resources, and supports systems here locally is the Indiana Parkinson Foundation.

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