Living with Parkinson's | The Center for Growth

Living with Parkinson’s is intended for anyone living with Parkinson’s disease or any related neurological disorder that may impact movement. When our bodies and brains do not seem to work in conjunction with one another, it can change the way we relate to ourselves, others, and the world around us. We understand the world as we move through it with our body. As our bodies and brains change, so does our experience of the world. This can feel very disorienting and even unbearable at times.

As someone living with Parkinson’s, it is common to feel disdain for certain parts of your body that continually seem to fail you. No matter how hard you try, your hand may tremor or freeze up in the exact moment you need it to accomplish something for you. Because Parkinson’s is often diagnosed later in life, it may feel like your identity is split between before and after sickness. What does it mean to be fully yourself given this new way of operating in your body and in the world? Acceptance is an ongoing process and some days you may feel more resistant than others. It can be difficult to balance the hope for change and improvement while also accepting the current reality in a way that allows for integration. Acceptance paves a path for change to take place – as you move towards acceptance you will likely put forth less energy to fight against your current state. This can create more space and capacity for you to engage with the world around you. Again, this is a process and it often involves grieving, lifestyle changes, support building, and continually adjusting to the needs of your body.

As a part of this process of acceptance, is important to acknowledge the parts of yourself that feel lost or limited. Being diagnosed with and living with Parkinson’s can often bring up feelings of grief because of the changes that occur in your body, life, and relationships. What might it feel like to invite those limitations in? What would it feel like to choose not to avoid or cut-off the parts of your body that just don’t seem to cooperate? It is never just about the body part itself, but about what those limitations mean for your life. Is it more difficult to dance with your partner? Do you feel unable to run errands alone? Can you no longer participate in an activity that used to bring you joy? All of these things can confuse your sense of self and how you operate in society. It might be helpful to mindfully practice noticing and offering compassion to those parts of yourself that you can’t resolve or fix – the parts you’d rather just cut-off.

We often hear how important it is to offer compassion to ourselves, but what does that actually mean? Compassion begins by seeing – we must truly see someone or something in order to offer compassion and that includes ourselves and our bodies. So much suffering comes from not being seen, heard, or understood. In order to integrate our body’s experience, we must first choose to notice what hurts. This does not only include the physical sensation but everything that comes along with it – all of the changes, emotions, and frustrations that are connected to rigidity, slowness of movement, or shakiness. Can you offer these places compassion by paying attention to them and deciding that, perhaps, these places can also belong? What does it feel like for an unwanted sensation, thought, or emotion to be a part of you too?

The following exercise can be used as a way to find an empathic point of connection within yourself as you navigate living with Parkinson’s:

Find a comfortable position whether that’s sitting or lying down. Settle into your body and into your breath. Begin to notice how you are breathing without judgment. There is no right way to breathe – just start paying attention and slowing down. You might want to close your eyes, but you don’t have to.
Begin scanning your body from the top of your head to the bottom of your feet. Do you notice any places of tension? Any places of pain or discomfort? Can you feel your tremor? Does part of your body feel stiff? Maybe your body feels comfortable and at ease – great! Perhaps you notice some thoughts or emotions that feel unpleasant – maybe something that has been bothering you for a long time that you can’t seem to resolve or find answers. Maybe it’s something that has just popped up for you. It can be a big thing or a small thing.
Spend a few moments here noticing the discomfort, pain, or unsteadiness. Try to breathe into any areas of tension or stiffness. You can breathe into areas of distress by focusing your minds eye on the area and visualize breath flowing through that place. If there is no body part that you are focusing on, notice the thoughts or feelings that you wish weren’t there. Similarly, try to breathe through those thoughts or feelings. Where do you feel the emotions in your body? Take a minute or two in this place of awareness – breathing through whatever emotions arise in you.
Now ask yourself: How might I relate to this part differently today? Can I suspend judgment about what it means or doesn’t mean about who I am? Can I work with it through this lens of compassion and breath? You might want to sit with these questions for a few minutes in silence or you may want to take out a journal and jot down some thoughts if that’s helpful.
After you’ve spent a few moments reflecting on this, return to your body and to your breath. Has anything changed? Have any places in your body opened up, softened, or quieted? Have any of your thoughts or emotions shifted as you have given them some attention and care? If so, this may be a helpful practice to return to. You may not notice anything immediately, but you may notice a difference as you move through your day.

If you are living with Parkinson’s, it is probably easy to feel as though parts of you just don’t work. It is normal and even expected to feel frustration about the ways your body has failed you and continues to fail you on a daily basis. What once was simple, no longer is. If you can begin to relate to these limitations in a new way, you may also begin to feel more capacity to engage in life without resistance. But you cannot do this alone.

The process of offering yourself compassion – an integral part of acceptance – begins with yourself but it does not end there. We need a team of people around us that can help us continue develop and nurture that empathic point of connection with ourselves. Working with a therapist is one way to develop this transformative self-compassion, especially related to the experience of living in your body. The therapeutic process invites us to notice parts of ourselves and parts of our bodies that cause us suffering. Exposing what we want to avoid or cut off is a very powerful tool for healing. It opens up the door for change in ways that are necessary for those living with Parkinson’s. We can, quite literally, move more freely as we become familiar with the system we are working with. As we see ourselves and allow ourselves to be seen, we create compassionate space in our body – flawed and frail as it may feel – and this can change everything.

To schedule a virtual or inperson appointment with a therapist who works with neurological and movement disorders. You can self schedule an in-person or virtual therapy session at the Center for Growth by calling (215) 922- LOVE (5683) x 100.

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Living with Parkinson’s

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