My Story

I was diagnosed with Parkinson’s June of 2016. I have always been active and very independent. Now I have trouble walking, getting up, picking things up, dressing, and just moving. I am on a very low dose of Mirapex. Have tried Azilect and Sinemet. Both had bad reactions to. They can’t increase Mirapex because of the reaction. It seems my only option now is DBS. If I pass the cognitive tests I will have surgery March 6. It’s been hard as my husband’s health is declining. I’m his caregiver. Trying to get him to and from appointments and treatments is getting harder.. Getting to my appointments are next to impossible. I have 160 miles one way to travel. Can’t drive that far especially in the winter..

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Comments

View Comments (5)
  • Chris H. moderator
    8 months ago

    Hi @nancynorman – I just wanted to check in to see if you had any updates on DBS. Hope you’re doing well! – Chris, ParkinsonsDisease.net Team Member

  • Erica
    11 months ago

    Nancy, I know this is in the primary focus of your comment/story. But could you tell me what your reaction to mirapex is? I’m trying to ramp up to taking but it makes me feel fluish. I really don’t want to start on levodopa until I have to. So I really want to try to make this work. Trying to find out if this is a common side effect and how long it lasts and/or if it goes away. There’s a lot of generic information out there I don’t seem to people find any actual experiences . I hope your situation is easing.

  • Erica
    11 months ago

    That was supposed to say that I don’t that the medication isn’t your primary focus of comment

  • Erica
    11 months ago

    Apologies. I am speech to texting because of tremors. It is supposed to say that I understand your comment was not primarily about medication. I’m so sorry for the confusing comments on my part

  • Chris H. moderator
    12 months ago

    That sounds so tough, @nancynorman. I’m sorry to hear about the struggles and medication reactions. We’ve heard great things about DBS from other community members. I really hope that this is an option for you! I wanted to share a resource with you that I hope will help. This page has several organizations listed in it that may be able to provide you with caregiving help for not only your husband, but for yourself as well: https://parkinsonsdisease.net/answers/finding-a-caregiver/. Please keep us updated on the results of your cognitive tests! I hope you and your husband have a restful holiday! – Chris, ParkinsonsDisease.net Team member

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