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You Have Parkinson’s…Now What?

By Jennifer Williams, Care Advisor, NCF


Parkinson’s disease is a neurodegenerative, progressive disease, meaning it gets worse over time. As with all cases of PD, each individual’s rate of progression and symptom severity will be different and unique to the person. A PD diagnosis brings on a host of varying emotions, stressors and fears. This disease not only affects the individual, but an entire family.

One of the first questions people often ask me is “What will my future look like with Parkinson’s?” As a Care Advisor for the Neuro Challenge Foundation for Parkinson’s, I have worked with thousands of patients over the years and have been asked this question on many occasions. The question is a difficult one to answer, much like an individual, the disease pattern is different for everyone. Some patients progress slowly and others, depending on age, lifestyle and severity of symptoms can progress much faster. It is truly a question that has no foreseen answer.

In my work with patients and families, I encourage them to shift their focus towards the disease. Rather than focusing on the future “what if’s”, patients and families are encouraged to focus on the “right now’s”, the things they can do to empower themselves and prepare for their long term well-being and care.

I offer the following action steps as a guide to begin planning and having the conversations NOW with your spouse and loved ones about how you want to be cared for as you continue to age and deal with the progression of Parkinson’s disease.

Education

Education and sharing educational materials with family and friends on Parkinson’s disease must be continuous. It is important to stay abreast to the latest treatments, clinical research and make sure that your family, particularly those who are closest to you, fully understand the diagnosis and long term effects. This is particularly important for families that have children or relatives that live out of state and are not present for the daily challenges that can occur with PD. It is important to remain open and honest with family and accept help when it is offered. You may not need the help now, but there may come a time when you will and the ability to reach out for and accept help is extremely important.

Advanced Directives

It is important to complete Advanced Directives while a person is competent and able to make future health care decisions. This allows family and health care professionals to know what forms of care you would like or refuse in certain medical situations. These are legal documents that may include your wishes related to financial or medical decisions and having a designated individual(s) to serve as your advocate in case you are no longer able to do it for yourself. These documents should also include your wishes for End of Life care; DNR, palliative care or Hospice. Be sure that once the Advanced Directives are completed, you sit down with your family and have a discussion about your decisions. Designate a place where everyone knows how to access the advanced directives and provide a copy to your designees.

Speak to your Financial Advisor

It is important to discuss with your planner what your long term wishes are now that you have Parkinson’s. Will you be able to afford to stay in your home with help or move to an Assisted Living Community if the need for more care arises? Having a realistic understanding of what your assets are and your ability to afford a higher level of care will ease the burden of having to make these decisions in the future.

Find out you Insurance benefits

Particularly a Long Term Care insurance plan. Long term care insurance provides respite and in-home assistance like non-medical companion caregivers. Typically, you will pay for these services outright and then be reimbursed for the cost of services. Every plan is different—be sure to investigate what your plan benefits are so when the time comes, you will know exactly how to access those benefits.

Remain flexible

PD can cause day to day fluctuations in abilities and symptom severity can change without any rhyme or reason. Many individuals who have PD will eventually face difficulty in communication, increased falls due to gait and balance deficiencies, decreased ability to perform Activities of Daily Living (ADL’s), weight loss, swallowing difficulties or drooling. However, medication, rehabilitative therapies and exercise are available to help patients avoid or lessen the severity of symptoms associated with Parkinson’s. It is very important to always allow for flexibility in daily schedules and activities.

Maintain your sense of self

Stay engaged in hobbies you enjoy and nurture the relationships that you have. Be prepared to make new friends in your journey with PD and do not hesitate to reach out for help along the way. This is particularly important if you are unsure as to “what are the next steps” in planning and preparing for increased physical and non-motor changes. I often encourage my patients and families to develop a habit of doing a shared activity that does not focus on the PD, but just connecting as a husband/wife, mother/daughter, father/son—this is extremely important as relationships change when chronic illness enters our lives. Honoring your relationship outside of the Parkinson’s diagnosis will allow you to see your loved one for who they are, not just a care partner or care receiver.

Seek out JOY in your life

Have fun, LAUGH, share your dreams and goals with your spouse, family and friends. Tackle your bucket list and live each day with a grateful heart and positive attitude. After all, everyone is challenged in life and although PD may be your challenge-NEVER let it define you or lose sight of YOU!

Neuro Challenge Foundation for Parkinson’s is here to support and assist you and your family in navigating the disease with dignity and peace of mind. If you would like to meet with a NCF Care Advisor, please contact 941-926-6413 to schedule your free appointment.