Desperately Seeking the Right Information

Without getting too bogged down with real “statistics,” a typical diagnosis of Parkinson’s takes 1-3 years from the onset of symptons.  At that point, the doctor often provides a prescription,  a return appointment in three months and not much else.  The newly diagnosed, probably in a state of shock,  is not only in no condition to ask questions, but has no idea where to begin looking for information

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Those of us who are patient advocates meet many other People with Parkinson’s (PwP’s) who have had exactly this experience at the time of their diagnosis; most of us have had it ourselves.  While there is currently no cure for PD, we know that (1) there are a host of things PwP can do to continue to live well, and (2) the sooner thePwP learns of these things the sooner he or she will be able to do so.   These include, among others, medication, physical therapy and exercise.  And more exercise.  And beyond that, exercise.  Did I mention exercise? Once a new PwP enters this world he will learn that there are a huge number of people who have been living with PD  for years and are living activeproductive lives while simultaneouly fighting the progression of the disease.

 

One of the primary goals of patient advocates — one of the goals for writing this blog — is to reach out to Primary Care Physicians and Neurologists (directly or through their patients) to encourage them to ease the shock of the diagnosis and give more information to the patient at the outset and to encourage the patient to ask questions.  It would be a huge step forward if the medical community only made itself more generally aware of the already available lists of Frequently Asked Questions (FAQs) regarding Parkinson’s (see below).

An incomplete list of what patients advocates talk to each other about of things we would like to see made standard parts of the initial diagnosis includes:

1.  Making immediate referrals of patients to a Movement Disorders Specialist (MDS) (rather than to a general neurologist).   An MDS receives additional training in Parkinson’s disease and other movement disorders including dystonia, chorea, tics and tremors.  They are more knowledgeable than a general neurologist about the latest treatment options, the need for exercise and all things Parkinson’s.

2.  Providing materials from the Parkinson’s Foundation, Michael J Fox Foundation, Davis Phinney Foundation, American Parkinson’s Disease Association (APDA), local support groups or organizations, and other resources available for the patients.  These FAQs and other materials can help set the newly diagnosed on a better path to help protect and even improve their quality of life early in the process; the sooner a PwP can take action, the better off he or she will be.

3.  Scheduling a follow-up appointment within a month and encouraging the patient to bring along someone to listen and to help ask questions.

4.  Connecting the newly diagnosed PwP with a patient mentor who can talk to him/her on a personal level about living with PD.   Informally, this could be another patient in the community who is a good role model for the newly diagnosed Parkie.  In addition, several organizations have Patient Mentors (or Ambassadors) who are comfortable in this role and are happy to help.  The purpose is to meet casually and explain — and demonstrate — in a casual lay setting that the PD diagnosis is not the end of the world; it’s not even the beginning of the end of a quality life.

5.  Encouraging them, above all, to start moving.  What seems to be a universal truth is that exercise is the best medicine to combat PD.  Of course, the amount and extent of exercise will have to match the PwP’s overall health an fitness.  But that is fine tuning. An unquestionable first, or at least primary, step must be to get as active as one can as soon as one can.

Until the medical community formally embraces these standards, it is up to us in the lay community to make this information available.  NO newly diagnosed Person with Parkinson’s should be sent home with only a prescription and a return appointment 3 months later.  Given the right information and instructions, the newly diagnosed Parkie will be much more prepared much sooner for dealing with their life with Parkinson’s.

 

On a totally unrelated note, I started reading PD blogger, Tim Hague’s new book “Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined”.  I am about 1/3 of the way through the book and really enjoying it.  I hope to review it in the next few weeks.

3 thoughts on “Desperately Seeking the Right Information

  1. I was diagnosed with Parkinson’s exactly how it is described in your blog. It took two years to educate myself- put together a plan and to “ get a grip”. I recently returned to the original movement disorder specialist and addressed the issue of my initial diagnosis. She said it is difficult to give this news. I think the steps here are a great way to start.

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    1. Thank you. The first doctor I went to did the same to me. After 6 months I refused to go back to him and my primary care doctor sent me to an MDS who was wonderful. I recently asked my doctor why he sent me to a neurologist the first time. He said that the neurologist was a good doctor and thought he would be fine for me I don’t think at the time that my doc knew there was a difference between a neurologist and MDS. He now jokes that I know more about PD than he does.

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  2. 1rocksteadyfighter

    Well said. This is so important. I almost feel like those of us who are advocates/ambassadors need to start speaking at the medical schools. We need to get to the students before they are ingrained with the faulty thinking that there is nothing to be done about PD.

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