Originally Published Online

Understanding PD
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Living Well With PD
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Clinical Trials
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In sickness and in health… how many of us in our relative youth at the time we make such a pronouncement, actually truly understand what those words mean. “In health” is the easy part of course but what happens when unexpectedly some sort of chronic, serious illness decides to intrude on your perfect union?

Like any unexpected event, a diagnosis of a chronic disease such as Parkinson’s, is inevitably stressful. And some marriages, already strained and unsteady, don’t survive. Blame is placed on the Parkinson’s but truthfully it could be any life stressor. But some of us are lucky enough to have a loving, supportive spouse or partner, one who is willing to walk this journey with us. This disease does not affect only the individual with the diagnosis; it impacts partners in real and significant ways. There are a few things to consider in order to support this relationship given the difficult circumstances you are facing as a couple.

(1) Look at it from their perspective. Sometimes witnessing a partner’s suffering is more difficult than experiencing it. Being a care partner is definitely a stressful position to be in and not an enviable one. So although it is only natural to become consumed with the symptoms and difficulties we face on a daily basis, it is important to remember what our partners are also facing. We too must be mindful and supportive.

(2)
Communication is paramount. It is sometimes very easy to shut down under the stress of a chronic illness, to build a defensive wall behind which you try to shelter yourself from the daily challenges life presents. But in doing so, you end up pushing away your partner, which results in frustration and confusion, creating a divide instead of a bond between you. It is important to try and open yourself up, communicate your frustrations, fears, share your feelings.

(3)
Express your needs. Only you know how you feel. The symptoms of Parkinson’s disease vary on a daily basis, and are often unpredictable making their management difficult. Much of the time, your discomfort, be it mental or physical may not be apparent to your partner and they may be unaware of how unwell you are feeling. As a result, their response may not be what you need or are expecting at times. Not surprisingly because if you don’t let them know how you would like to be supported, then you will likely feel your needs are not being met. It is only fair that you communicate how you are feeling and what your expectations are in order to allow your partner to respond appropriately.

(4)
Build a strong support network. We all need support. We all benefit from the support and love we receive from our network of family and friends. So does your partner. Make sure that he or she has someone that they feel comfortable discussing their feelings with because at times they may not want to communicate their thoughts with you out of a desire not to increase your burden. Even for you, it is sometimes helpful to discuss your issues with a trusted friend or family member from time to time as they may give you a different perspective.

(5)
Recognize that Parkinson’s does not define you or your relationship. Just like your illness does not define who you are, your Parkinson’s disease too does not define your relationship. Remember why you came together in the first place, the qualities you admired in each other, the person you fell in love with, the relationship you built over the years. Your disease potentially influences everything in your life but it doesn’t have to overshadow it or dominate your every thought or conversation.

(6)
Enjoy life, enjoy each other. Make each other your priority. Continue to live life to the fullest. You may have to modify some of the adventures you may have planned but you don’t have to necessarily abandon them. Life as you’ve discovered, is unpredictable. Enjoy each day and each other – cherish each and every moment.