caret icon Back to all discussions

Where do I begin???

My brother, age 67, received an official diagnosis of Parkinson's disease last fall, although many of us had suspected it for quite some time. He has little confidence in the medical community, and therefore, avoided going to the doctor, for years. However, after a fall last summer and weeks and weeks of rehab, he is now in an assisted living facility. My husband went with him to his first appointment with the neurologist who diagnosed Parkinson's, and was NOT impressed with the doctor. No real exam, wasn't concerned that my brother's blood pressure was extremely high (180/?) and sent him home with little more than some beginning medication. I live 3 hours away, but make frequent trips to visit him in the assisted living facility, but he's really getting NOTHING in the way of extra care. Where do I even begin to find help for him???

  1. Hello. I'm sorry that your brother is going thru so much. We may recommend that he gets a second opinion from another Motor Disorder Specialist (MDS). Sometimes, unfortunately, it takes a second try to find the right doctor. I have included a few articles from our writers/contributors. The more informed you are about PD the better. Also, it may be beneficial to talk to a social worker on staff at your brother's neurologist's office- they can help guide you in finding the best care for him. You might also ask at the his assisted living facility on what outside help you can get for his care since you live a distance away.

    Please let us know if this helps-
    Best regards, Suzanne Troy, team member

    1. Neurologists aren’t real forth coming with information. In fact when I was diagnosed,the neurologist pointed to a book to get and read. It’s hard to communicate everything you feel is important. But when your talking to the doctor you’ll notice their eyes are watching movements and how the patients mind is working. Let your brother talk as much as possible. Parkinson’s speaks for its self really, when your in front of the neurologist. Make sure his pain is taken care of. I have to go to pain therapist separately from neurologist. If he’s having a hard time getting sound sleep. They need all that information to help. Physical therapy and occupational therapy. Relax it’s a long path to walk.

      1. Thank you so much. Since we're JUST starting this "official" journey, I have so much to learn. My husband took my brother to his initial appointment with the neurologist; I plan to go with them next time. It's helpful right now to get some direction on what to ask, what to reasonably expect and how to help without interfering. I so appreciate your response.

    2. There's a lot of good advice here, but I will add that PD treatment steps are big and scary and require acceptance of having / being something. Even with what I do for me, there's things that I and other advocates move through challenges to accept. Thus, it's not easy to move into getting treated / helped. Nevertheless, I would add make no timelines, keep moving forward, find medical professionals that work for you. Nobody is perfect for anything. Acceptance is different in this game. We're all unique, so take this all step by step. We all need to come to a plan B that works for us. To me, that's the best I can hope for. I wish him well at finding his plan B. Take care.

      1. My neurologist takes emails between visits, which is very helpful. Sometimes my neurologist needs to Ask questions but I have a ton of questions or I will forget things I want to ask. I write down concerns. There are multiple signs and symptoms, and come on different times with each person. Parkinson’s effects almost everything in my life, something’s I don’t realize myself.

        Please read our rules before posting.