Monday 7 January 2013

CBT and the mental challenge of Parkinson's

The major challenge of Parkinson’s is the chronic nature of the disease and the need to live with and adapt to its changing nature. The emotional impact would be less demanding if treatment of the physical symptoms was better but, alas, we all have to live now with the disease and the treatment available.

From personal experience, I was told I might have Parkinson’s in January 2012 and I was finally diagnosed in April 2012. That three month wait was the most exquisite torture. I felt glued to the floor. I couldn’t get on with my life or start the process of coming to terms with the disease and I wasn’t able to access any services because I was yet to be diagnosed. I had to deal with the emotional impact of Parkinson’s without any professional support (I was already, without knowing the cause, dealing in my own way with the physical symptoms prior to my diagnosis). I tried accessing my local mental health services but was told there was a nine month wait. It was a despairing and desperate time.

The way I found to cope with the mental impact of Parkinson’s was to try cognitive behavioural therapy (CBT); I met a brilliant private therapist who has offered me the tools and strategies to reassert myself in the face of Parkinson’s. I believe all sufferers and their families, from the moment the possibility of Parkinson’s is raised, should be offered therapy.

Therapy is a confidential place where you see an unbiased, supportive person who gives you the time and space to explore your thoughts and emotional reactions. They will also gently challenge your automatic patterns of thought and offer strategies to help you think and feel in alternative, more helpful ways. Sometimes we get lost in the minutiae of Parkinson’s so it’s beneficial to be reminded to look up from the Parkinson’s microscope and see the whole person you are. You have to be open, honest and work hard, successful therapy is based on how you respond and learn.

Don’t dismiss therapy because it can’t eliminate the fact we have Parkinson’s or the decline we are facing. But taking tablets also doesn’t offer a cure so why do we take them? Obviously to reduce the impact of the disease. Therapy is designed to do the same but in a much more personal and empowering way. The best therapy gives you the tools to be your own therapist. You can’t think yourself cured but you can think yourself to a better, more productive and helpful emotional relationship with Parkinson’s.

3 comments:

  1. Thanks - a helpful post. I'm finding the worry more debilitating than the shakes.

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  2. I have MS and Bipolar 1 disorder. This is my ideal psychological treatment.

    Dealing with emotion control when there's so much to get emotional about...its a neverending struggle. And the MS fatigue kills me. I lose all of my energy, regardless of my attitude. Its frustrating, exhausting and neverending.

    All of my past shrinks and the one therapist I had never offered strategies. They just let me drone on and offered nothing but drugs.

    I start with a new psychiatrist in mid August. Its a place for advanced or abnormal psych patients so hopefully they will understand the combination of these two diseases. I'm hoping they will pair me up with a good psychologist/therapist. In the meantime I try to manage with otc supplements and psych drugs from my pcp and neuro.

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  3. Hi Beth

    Good luck with your new treatment. I have a huge struggle with Parkinson's fatigue so I can understand your difficulty. CBT is about overhearing your negative thoughts and gaining distance from them. Just because you feel it, doesn't make it true! Read the mindfulness book by Williams

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