My Spouse Has Been Diagnosed with Parkinson’s Disease – What Now?

The past few weeks of your life have felt like a whirlwind. You sat with the doctor, they probably explained to you the medical prognosis, treatment options, and at least some of what to expect. But what now?

We want to suggest a few tips from healthcare professionals, service providers, and spouses who have many years experience with Parkinson’s Disease. While you might feel lost in a fog right now, it is important to start educating yourself to feel better prepared and empowered in your new reality.  Once you are properly informed you can then spend the rest of your time focusing on the one your love, their needs and creating some time for self-care.

Below is a compilation of information to get you started:

To Google or not to Google?

The internet is full of endless resources and if you were to start Googling now you will probably spend hours going down the rabbit hole. To reduce your overwhelm we have gathered a few of our favorite resources from The Michael J. Fox Foundation for Parkinson’s Research website which has a wealth of information on a wide variety of related topics. Spend some time getting to know the site and the “virtual community” that you can find there. Also, visit the Parkinson’s Foundation and AARP. You might want to start with the following articles:

• • You Have Just Been Diagnosed with Parkinson’s, Now What?  
  • Advice for Loved Ones and Caregivers

Find out who the best physical therapists are in your area that deal specifically with Parkinson’s patients. Of course you should consult with your spouse’s doctor, but you may also want to ask for recommendations from Parkinson’s forums or anyone you know personally in the area having a good experience with physical therapists. In addition, the Parkinson’s Foundation website has a services locator feature that allows you to search by zip code.

Become more educated about your health insurance, coverage, and rights.

Your insurance coverage needs are going to change. Allocate some time to have a proper phone or in person meeting with a representative who can walk you through what you will need to do for claims and any other services that are covered by your insurance and, more importantly, which ones are not.

Looking towards the future, mentally prepare for changes to your home and lifestyle.

When a person receives their diagnosis of Parkinson’s, in most circumstances by just taking medications they have many years of proper non-impaired mobility. Time and again, the spouse of a Parkinson’s patient is the one who will have to be the most proactive about adjustments to the house, car, and other aspects of your lifestyle. However much you can anticipate these future needs, the easier the transition is going to be. Again, this is where participating in online communities and having a good relationship with your spouse’s doctor will be crucial. Here are a few things to start thinking about but keep in mind that everyone’s home, circumstances, and timeline are different:

• Will you need to eventually install a ramp?
• Will you need to rethink your current car needs?
• Is your bathroom set up properly?
• How soon will you need a cane and/or walker?

While these issues are not of immediate concern, it is good to keep these issues in mind so you can easily adapt when the need arises.

Research walkers before they are required.

For many, the realization that the time has come for a walker can be very difficult for a person with Parkinson’s to accept. While the need for a walking-aid after a Parkinson’s diagnosis is far from immediate (in fact in most cases it’s several YEARS in the future), it is important to keep in mind that this is where the patience and insight of a spouse can be invaluable. There are specialized canes and walkers that have specific features to help with stability and Parkinson’s freezing. They can not only prevent falls, but can also help those with Parkinson’s to lead active lifestyles. 

There is danger is in waiting too long to use a suitable walking-aid. Falls can be devastating physically and emotionally.  Also, it is better to start using a walking-aid earlier than later so the person masters its use.  Fortunately, insurance companies and Medicare often reimburse most of the cost of these specialized walking-aids because of their effectiveness in preventing falls.

Having regular check-ups with your neurologist and knowing what your options are before you need to rely on them will give you and your spouse some peace of mind.

Emotional and physical support for you, and for your spouse.

Clearly, your spouse is going through something right now that was unimaginable only a few short months ago, but don’t underestimate the toll that any serious diagnosis can have on the spouse of a patient as well. Your self-care will become just as important in the coming weeks of what we hope will be many long years you have together. Figure out those few things that make you feel empowered and bring you joy, preferably on a daily basis. Whether that be making fitness a priority, meditating, or meeting up with a friend that lights you up for coffee once a week. Really sit and think about what you can do for yourself and, most importantly, follow through. For more information on this topic, Barry Jacobs, a clinical psychologist, further explains in this AARP article the need to find support, take care of oneself, and to communicate your needs to your spouse.

So what now? Take a breath. Rally your support team behind you, and get started with educating yourself to make confident initial steps for you and your spouse.