If you have Parkinson’s disease (PD), you now know that all of your relationships -- with your spouse, partner, family, friends, colleagues and acquaintances -- can change. The changes run the gamut from outright loss of a relationship to profoundly satisfying deepening and renewal of a connection. The most important thing to remember when reflecting on how PD influences your relationships is to remember that you have some say in the matter. While you cannot control how people react to your PD, you can speak up when people start to treat you in ways that are incompatible with your dignity or independence.
It is difficult enough trying to navigate complex relationships when you are healthy and in good spirits. But it is even more difficult to navigate relationship ‘waters’ when you do not feel 100% -- when your mood is down and you are filled with anxiety about your condition, your future and that of your family.
Nevertheless, navigate these relationships you must -- and you will, one way or another. You can choose to be proactive and positive in your approach to others. Start with a kind of manifesto about how you want your relationships to grow over the course of your disorder.
Presumably what you want is to be able to receive love and support as well as give love and support to those around you. You do not want to apologize for your disorder. It is not your fault. It happened, and now all of those around you need to come to terms with it. If you find that certain people cannot accept it, remind yourself that this is their issue to contend with. The one exception? Children. You will need to find a way to help children come to terms with your illness. But adults should have the grace not to burden you with unnecessary outbursts of anger or denial. PD is now a fact of your life and it must be accepted.
Of course, those who love and those who have invested in you may react initially with grief, anger and disappointment. Those reactive stages, however, should not go on indefinitely. These adults need to learn that you are still you and that the relationship can still go on. Over time, as your PD progresses, your contribution to the relationship will change or even diminish, but that is entirely understandable. Indeed, even relationships among healthy people undergo dramatic changes over the course of the years. Why should PD be any different?
In short people around you need to come to terms with your PD and its implications for the relationship. Once they do so, the relationship will grow and may even nourish both of you just as it always had done.
The work your friends and family must do after you receive the diagnosis is clear: They must come to terms with the PD and learn that you are still the same old you. Those close to you must further decide how involved they can be in your care when you need help.
The work you must do vis a vis all of your relationships is different. You must learn how to maintain your relationships despite being relentlessly ‘pursued’ by the disease. Each relationship will require a different set of responses from you in order to maintain them and to keep them healthy.
Your Most Important Relationships: Your Spouse and Your Self
The most important relationship you will have throughout your PD is your relationship with yourself. You will need to find ways to nourish your spirit despite much adversity. You will need to find an inner spiritual core that can sustain you while you struggle to maintain a normal life despite PD’s daily intrusions. No one can tell you how to do this. No one but you knows what really recharges your batteries and imparts to you an inner calm, strength and fierceness. Whatever that thing is, that thing that gives you strength and a zest for life, you will need to nurture it and rely on it both to fight the PD and to keep your other relationships healthy and nourishing.
The second most important relationship for you, if already part of your life, will be your ‘significant other’ -- your spouse or primary companion. This person is the one who will witness your hardest moments and your brightest. You have got to find ways to graciously accept all of the help they are willing to give to you. You also need to learn the ropes of coping with PD together. As much as you can, help that person learn about PD, keep spirits up and remain intimate with you.
She needs you and you need her. Rejoice in that fact.
Believe it or not, PD and its challenges can actually deepen and strengthen your relationship.