an unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain, or a threat.

A diagnosis of Parkinson’s disease can create a fear of the future that is difficult to cast aside. For example, a patient who has lived comfortably with the idea that what they have is essential tremor is thrown into turmoil on the day that he or she hears, once and for all, that what they are actually experiencing are the symptoms of PD. It makes one circumspect because the prognosis is one fraught with much difficulty. A PD diagnosis makes us different from who we were just moments before we hear it. Or does it? Does it have to change us, completely?

Very often it is the feeling of losing control over one’s life that brings on the fear. There is now the possibility of debilitation in the future that we had not forseen. Perhaps  a wheelchair or a walker will be needed at some point down the road. It’s important to keep in mind that this is only a possibility and not a reality. You must act with confidence to do the things that will keep the negative outcomes at bay. The importance of exercise cannot be overstated. Take brisk walks three times a week, engage in an exercise class that suits your ability level, use rehabilitation like LSVT-BIG or LOUD and their follow-up programs. By all means, move around! If you are doing these positive things, then you can also spend time with family, go out to dinner, movies, working, gardening – not dwelling on what “might” happen. Because it might not happen.

A chronic illness can change our self image and suddenly we find that we are telling ourselves the story of how we cannot be who we once were. Clearly the solution is to rejoice in who we are today. Relish everyday experiences, big and small. 

Many people have a great fear of becoming a burden to their family or friends. Sometimes the journey is difficult. Yes, this is true. It is also true that it is the journey that makes us who we are and enriches our lives, if we will only let it be so. You are to be cared for AND you are to care for someone else. Don’t forget that part of the bargain. Life is a journey for your caregivers and family, just as it is for you. Both of you will benefit from your time together, if you allow yourself to be open to this. Take the time to attend an engagement or support group if one is offered in your community or start one yourself.

Many people feel the sting of embarrassment or stigma associated with Parkinson’s. It’s important to remember that the burden of hiding the disease is much greater than living with it openly. 

When I talk about fear, I do not minimize the difficulty that exists in accepting that you cannot walk as you once did, or button your shirt or recognize your face in the mirror. Fear is the most debilitating of all emotions because it erases anything that comes before it and makes the future untenable. When we make decisions based on fear – especially avoidance – we are weighing ourselves down. We should notice our negative feelings of guilt, fear, anxiety, etc. and allow them to pass through us, not bottle them up. A good psychotherapist can sometimes help with giving us the tools we need to do this. We must not react to fear but rather act on the facts of the situation. This, of course, takes practice. Afford yourself some personal control by doing anything that you can to make your situation (even a little bit) better. There is always something that can be done. Work to find meaning in everything because there is worth in everything and everyone. Especially you. And there is always a silver lining.

Written by Doreen T. Sutherland, MBA



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