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What do I do if ..."

  • My Symptoms Have Reappeared Slowly (e.g., in the last month or so)?
    If, over the past couple of weeks or months, you notice that you need medication more frequently or the current level of neurostimulation isn't providing the benefits it once did, here are some things that MAY be going on. 1) You may need a programming change. Contact the programmer's office and if possible, speak with him or her directly. They will be able to assess the situation and often can get you in for an appointment sooner than if you make one on your own. 2) When you see your programmer, have them do a systems check, including the battery or batteries. It may be time for replacement. 3) You may need a change in your medication. Remember, DBS is not a cure, nor does it halt the progresssion of the disease!
  • My Symptoms (or Some of Them) Return Suddenly?
    If your motor symptoms have been under control with DBS for weeks or months and one day, out of the blue, your tremor returns or your dyskinesia starts, here are some things I would do, if I were in your position. 1) Check to make sure that your device is on. If you have two neurotransmitters, check them both. If you got turned off, turn the neurotransmitter back on and you should be fine. 2) Check your medications. If you have had a medication refilled recently, check to make sure that the pills look the same as they had previously and that the manufacturer is the same. All too often, insurance companies will change their formularies (their "drug libraries") and you may find that the generic levodopa they're supplying now does not work for you. 3) Make sure that the medication you just took hadn't been in your purse for months or sat in a hot car for many hours. Drugs DO expire, so try to keep them in original containers when possible in order to know the expiration date. And medications can undergo chemical changes in extreme heat. If you live in a hot climate, your car's glovebox may not be the best place to store extra medication.

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I'm an environmental health activist, author, wife & mother who also has Parkinson's disease.


I'm a Pisces, which means that I have multiple personalities. In social situations, I tend to be very shy and quiet. But if I'm talking about something that I'm passionate about, watch out! You may have a tough time getting a word in edgewise. My writing is the same way. It's hard to call myself a writer because I am not disciplined to write every day. If I get an idea in my head, I can't NOT write. Three things I'm passionate about: my family; Parkinson's disease issues; and environmental issues--especially those that deal with toxic chemicals.


watching movies, reading, trout fishing, etc., poetry, painting with watercolors, volunteering for parkinson's organizations, writing -- not just about pd--i write short stories, watching soccer -- my 12-year-old son's class 2 team or fifa