Some Direction for the Newly Diagnosed

Some Direction for the Newly Diagnosed

When one is blindsided with a diagnosis of Parkinson’s disease, it is so easy to feel shocked, overwhelmed, in denial, numb, or a combination of them all. For me, it took me days to make any sense of the diagnosis. While I was relieved that my Parkinson’s-like symptoms were not due to a brain tumor, as I had predicted (with my very limited and non-existent medical training), I still remember the fright of hearing, “You have been diagnosed with Parkinson’s disease.”

Before I had a better understanding of Parkinson’s, I used to think that my symptoms began at the age of 17, but now, I am pretty certain that my early childhood eye and ear problems must have been connected, somehow. At the age of 17, I was the most athletic I had ever been, as a member of my high school tennis team. I was in tiptop shape, or so I thought.

Long diagnosis

My first really noticeable symptom made an appearance as a resting tremor in my left foot. I attributed the tremor to stress or tension that any 17 year old goes through. Slowly, over time, other symptoms like my stooped posture, dragging my foot, speaking softly, and not blinking as often as usual, all came about.

It took 6 years and at least 9 different doctors to get my diagnosis. I was so relieved to be able to put a name with my condition. So much of my life, by the age of 23, was undetermined, because I was unable to focus on my future, without knowing what I was facing and how it might progress. With a non-fatal diagnosis, I could create a plan of how I was going to get better and move on with my life.

I turned 50 last year. I have had Parkinson’s for over 30 years and it has taught me so much. This disease has led me in many directions that I would have never imagined, most of it good. The community of people with this illness is a very special one, and one that has brought me many friends.  I have met so many amazing and inspirational people from around the world. I encourage you to do the same.

Don’t stop learning

Here are a few things that I would suggest a newly diagnosed patient consider:

  • Information and knowledge will add to your confidence level as you understand more about your illness.
  • Create a strong footing with a plan to remain active, healthy, and positive.
  • Don’t go down the path of negativity, for that can only lead to bringing you and those around you to an unproductive place.
  • Keep moving forward in your life.
  • As your illness changes, so might other aspects of your life.
  • You will have to learn to be flexible and to compromise.
  • Build a network.
  • Build a care and wellness team.
  • Know your limits—but keep pushing them as long as you remain safe.
  • Keep building relationships and staying social.
  • Don’t stop learning.
This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (4)
  • jimcsctx
    3 months ago

    I would like to know more about the issue of the effect of eating protein and the dossage timing considerations for those on meds w levadopa.

  • Karl R moderator author
    4 months ago

    Hi beckcomm, I am so pleased that you found my tips to be of assistance! It means so much when my words connect. I wish you well and love your three things. I think writing is helpful and your books will be a welcome addition to the world. Don’t put too much pressure on yourself. Be Well! Karl, ParkinsonsDisease.net, Community Team Member

  • beckcomm
    4 months ago

    Thank you! These tips are helpful. It’s just been a few days, and I feel as if I need to just let the diagnosis settle in before I react to it. Still, in the three days since I heard the news, I have resolved to stop procrastinating and re-energize three things I’ve been working on slowly for years: lose weight (which will be good for my body), clean the junk out of the house and prioritize what I keep (which will help my family), and finish the books I intend to publish (which will help me).

  • Michael Church
    2 years ago

    Great tips on living life with PD! I might expound upon your list of bullet points the following:

    * Reassess new interests, hobbies and activities.

    If you feel limited by PD, don’t be afraid yo try something new. for example, It can be frustrating to continue to play golf if your shot slices into the trees throughout your game. If it brings joy to your heart, then it is good for the soul and quality of life will follow.

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