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I’ve Got Parkinson’s… Now What?

Article written by Jackie Hunt Christensen.

Coming to terms with your diagnosis

Everybody reacts to a serious diagnosis like Parkinson’s disease differently. If you have been diagnosed with young-onset Parkinson’s disease like I was, hearing that kind of news is like hearing the sound of a heavy steel door slam shut on your future. It leaves you feeling alone and shaken. Or, you may have simply felt a sense of relief, because after years of bouncing from one doctor to another you finally had an answer.

No matter at what age you are diagnosed, you will be challenged by the news of a disease that you may not know much about. Whatever the reaction to your diagnosis, you will need to give yourself plenty of time to process the range of emotions you will experience. In the next several months, your goal should be to think through the emotional and physical effects of your diagnosis and to learn all you can about the illness as well as the resources that can help you stay healthy, both mentally and physically. 

Parkinson’s disease affects people from every walk of life, from political and religious leaders, actors and sports figures, to farmers, teachers, and members of the clergy. It does not matter if you are man or woman, although slightly more men than women are diagnosed with PD. Race, age, ethnicity, socioeconomic status and many other ways that society differentiates people do not make a difference. This can serve as a reminder that you are not alone, and that your PD is not a conscious choice you made.

Here are some ways you might deal with your diagnosis
 

Be open with those around you

I was a math professor at a community college when I was diagnosed. I did my best to hide my symptoms from my students and colleagues because I didn’t want to lose my job. I thought it was working until one day I was called to the dean’s office. A couple of students had reported that I appeared drunk in class on many occasions, slurring my words and walking like a drunken sailor. It was then that I knew that I had to tell the dean and the students so that they would know I wasn’t a drunk. Luckily, everyone was very understanding and I kept my job.
— Bob, diagnosed at 48

Once you have been diagnosed with Parkinson’s, your first instinct may be to try to hide your diagnosis from others. However, it is important to your overall well-being that you open up to friends and loved ones and get the support you need.

If you have not done so already, set aside regular time to talk honestly with your spouse or life partner about the challenges you are facing. This will help you both understand each other better and make more balanced decisions over the long run. Young children need to be told that Parkinson’s disease is not contagious, and that nothing they did led to your disease. Tips on how to talk to your family about your diagnosis will be provided in one of our upcoming articles.

And with friends and neighbors, simply be direct about how you feel and what you need.  If, however, you do not feel ready to open up to others, it can be helpful to write about difficult emotions or to talk to a trusted friend or therapist first.

Find a medical team you can trust

I was so depressed when I received my diagnosis because Dr. B told me, “Here. Take this medication (Sinemet®).  It will work for five to seven years and then you will have to go into a nursing home. Come back and see me in 12 months.”

Boy, am I ever glad that I saw Dr. A for a second opinion! My wife and I learned that while no one knows how my disease will progress, my attitude plays a big role.  We are working with a physical therapist trained in Parkinson’s who has developed an exercise program just for me. I am still doing woodworking as a hobby, and it has been ten years since my diagnosis. I am thinking about making a plaque for Dr. B that says “I have Parkinson’s disease. Parkinson’s disease does not have me.”
— Bob, diagnosed at age 64

Believe it or not, all doctors are not created equal. That is why the most basic piece of advice for anyone facing a Parkinson’s diagnosis is to seek the care of a neurologist who you trust, and with lots of experience treating Parkinson’s patients. That may mean traveling to a major medical center where highly trained Parkinson’s care teams — neurologists, nurse specialists and therapists — provide comprehensive care.  

Build your support system

The term “system” is very important. If you have only one person with whom you can share your hopes and fears for the future,  talk about proposed treatment plans, discuss symptoms and accompany you to appointments with your health care provider, that person will be under a great deal of pressure and stress. It also sets you up for disappointment, because fulfilling all of your needs as well as having a fulfilling life of his or her own is basically impossible. The old adage, “Don’t put all of your eggs in one basket” comes to mind. Having other people be involved in your support system gives you more options and can reduce stress for everyone involved. 

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