Navigating Life After a Parkinson’s Diagnosis with an Aging Life Care Professional

By:  Linda Fodrini-Johnson, MA, MFT, CMC, Aging Life Care Professional

April is Parkinson’s Disease Awareness Month.

When an individual is diagnosed with Parkinson’s, it can be all consuming and take over as the focus of life. However, with some excellent coaching, it is easy to see that the diagnosis is only part of who the individual is, it is not who they are as a whole.  During this early initial phase, there will be anxiety, worry and concern for everyone in the family system.

The medical community will be able to connect all the professionals needed.  However, without some organization, it might be only when symptoms are problematic.  If the diagnosis came from a Movement Disorder Specialist (who is a neurologist) they are most likely to connect you with the majority of experts for this journey.  However, they often do not know the expertise and value of the Aging Life Care Professional®, also known as a Geriatric Care Manager. From my perspective, the an ALCP can be the “Life Navigator” who will see that you are more than a disease. They can help you and your family focus on what gives your life meaning and purpose, as well as attend to the medical issues of Parkinson’s.

The Aging Life Care Professional has connections with supportive services – such as support groups, personal trainers, volunteer opportunities, technology supports, assists with entitlements and local support systems from legal experts to housing options or home modification experts – which allows for aging in place.

Cost of care is a concern as this journey progresses for most families, so it is essential to get a recommendation for an Elder Law attorney who specializes in helping couples or families dealing with the cost of long term care.  Do proper legal planning early in this journey and it is best to start with an Aging Life Care Professional so you can take the recommendations based on your values and resources to the attorney and have that interjected into your legal plans. Designate two or three people to name as possible Health Care Advocates for you should you not be able to make health care decisions.

When using an Aging Life Care Professional, they will follow their client from diagnosis and through every change and transition – they become a personalized advocate to be on call 24/7 for the changes that might be experienced.

Many individuals do very well with Parkinson’s for many years before having to bring in care or move to supportive living communities; others will advance more quickly.  It is important to start planning early in this process.

One of the most important aspects of staying healthy with any progressive illness is to be pro-active and focus on a healthy lifestyle.  Exercise 30 minutes a day, eat a healthy diet – consult with a nutritionist who specializes in individuals with Parkinson’s.  Stay socially engaged – isolation will shorten your life and contribute to depression.

You can find an Aging Life Care Professional in your area at aginglifecare.org.


About the Author: Linda Fodrini-Johnson, MA, MFT, CMC, is an Advanced Professional Member and Fellow of the Leadership Academy.

This blog is for informational purposes only and does not constitute, nor is it intended to be a substitute for, professional advice, diagnosis, or treatment. Information on this blog does not necessarily reflect official positions of the Aging Life Care Association® and is provided “as is” without warranty. Always consult with a qualified professional with any particular questions you may have regarding your or a family member’s needs.

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