thelen_gilBy Guest Blogger Gil Thelen, research advocate with the Parkinson’s Disease Foundation and a National Parkinson Foundation Moving Day® Walk for Parkinson’s participant

I wasn’t ready for a crash course in neurology. I was enjoying retirement, assuming my medical education was far behind me (I attended medical school before pursuing a journalism career).

But then my doctor said, “You have Parkinson’s disease.” Ever since, I have been immersed in Parkinson’s 101: what it means to live with a chronic neurological disease.

This April, Parkinson’s Awareness Month, my thoughts turn to the 5,000 people in the U.S. who will also hear those words this month. What do I wish I had known when I was diagnosed?

  1. It’s a snowflake disease. Just like a snowflake, each of us is unique and so is our Parkinson’s. Do not assume your disease will look like someone else’s.
  1. Some symptoms are invisible. Because many of us associate Parkinson’s with movement symptoms, we may ignore signs of depression, fatigue or constipation. In recent years, the medical field has recognized that such symptoms are part of the disease. If you notice them, tell your doctor so they can be treated.
  1. A Parkinson’s specialist can help. Most of us see a general neurologist for our care, without realizing we might benefit from seeing a movement disorder specialist. These neurologists, who have undergone two years of additional training, can help us to better manage the disease and stay current on research and clinical trials.
  1. We can benefit from complementary care. In addition to medications, we can benefit from physical, speech and occupational therapy and the knowledge of nutritionists and psychotherapists. Putting together a care team of these professionals early on can pay off for years to come.
  1. Local connections can help us keep up. Where can I locate a physical therapist? Who can help make my home safe from falls? The answers are easier to find when we are looped into the local Parkinson’s community. Get involved with support groups or organizations to keep tabs on what your community has to offer.
  1. Staying active is essential. Parkinson’s may affect our movement, but staying active can help in the long run. Research shows that intensive, sustained exercise can ease symptoms and combat fatigue, and that regular daily activity (going for walks, doing the laundry) can help improve life with Parkinson’s.
  1. We can live well. It is not only possible to corral the disease, but it is essential to do so. Find your passions. Mine are advocating for research and raising awareness. Never give in to the disease or lose hope.

Also remember that we are not alone. There are 1 million of us nationwide.

Groups such as the Parkinson’s Disease Foundation and the National Parkinson Foundation are available to support us. Contact them to find information and resources. Together, we can not only live well with Parkinson’s, one day we can end it.

By |2018-03-21T13:51:20+00:00April 1st, 2016|8 Comments

8 Comments

  1. Patricia Walker April 14, 2016 at 3:27 pm

    This is great my Mother had Parkinson’s and sometime I think I do also. Now I can talk to my physician about my symptoms.

  2. jean April 14, 2016 at 3:31 pm

    Thank you for an encouraging article. Mid-coast Maine is lacking in resources, but am researching…..

  3. Lisa Vanderburg April 14, 2016 at 6:57 pm

    I just LOVE the candidness of this – you cut through all the nonsense. Bravo, Gil Thelen!

  4. Vivian Wolfson April 14, 2016 at 9:37 pm

    My husband was diagnosed about 12 years ago and has been fortunate to have a team of specialists at a renowned university to help him. When I discuss Parkinson’s with others so many people tell me about friends and relatives who have been diagnosed but are either under the care of a general physician or a general neurologist. The importance of being cared for by a Parkinson’s specialist is paramount to maintaining optimum health. Therefore, no matter how caring and gifted a general practitioner or general neurologist may be, a referral to a Parkinson’s specialist who is up to date on breakthroughs in research is necessary.

  5. Latosha Solomon April 17, 2016 at 9:12 pm

    Gil, You summed it right up. Great Article!

  6. Marilynne Solomon April 18, 2016 at 1:50 pm

    Hi Gil,

    I am a fellow “Parkie”. My mother had it so I wasn’t shocked by the diagnosis but the symptoms came on seemingly suddenly after 60+ years of excellent health. Never had any major problems except in the past had a bout of depression.

    A year ago, after being in semi-denial, my symptoms came on so intensely I ended up in the Emergency Room. I could barely walk and was falling frequently barely able to get myself off the floor (or street when falls happened while walking my dog).

    I am an optimist. I practiced Buddhism years ago which gave me the knowledge of meditation and what I believe to be a “learning” attitude towards my challenges.

    Forward one year, I gave my walker to Goodwill, participate in an intense workout at the “Y” in a PAR group which also gives me the opportunity to meet others who are dealing with similar but unique challenges.

    I am financially challenged, but look forward to working part-time.

    Marilynne Solomon

  7. Brenda Kennamore April 23, 2016 at 5:14 pm

    I’m so grateful for this chance to find help. Several neurologists have made major changes to my meds and say see you in two months. I’ve been on a yoyo with meds and now I think I have a great caring doctor that is very alarmed at how much Sinemet I take daily. If I can help anyone not to make the same mistakes I’ve made , I’ll be grateful.
    Thank you for caring
    ,

  8. Linda Hodson April 29, 2016 at 10:21 am

    Parkinson’s U.K. is the British equivalent. It is an excellent organisation that supplies an abundance of reliable information on all aspects of Parkinson’s free if charge (or a minimal £2 p.a. membership fee,) offers support, fundraises and sponsers research. I wish I had been told about it when I was first diagnosed. Trawling the net for information on Parkinson’s can lead to scare stories and quack cures.

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