The need to be heard and considered as human beings, not merely patients

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This topic contains 2 replies, has 1 voice, and was last updated by  Karen Jaffe 3 months, 2 weeks ago.

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  • #1244 Reply

    Fulvio Capitanio

    It’s such a hard task to express everything in a nutshell
    I cannot decide from where to start
    I’m going to try to discard the obvious items: more money for research, find a cure, better care for PwP, and a large etcetera…

    This time I want to put the accent on the need to be heard and considered as human being before than merely patients
    A couple of months ago I stepped into one blog post that talks about that
    This is something that any caregivers should read.
    I liked that much than I translated it into Italian and Spanish to help spread your words in our communities.
    All credits to Shannon Sims



    Dear Movement Disorder Specialist,

    You need to know that the man who sits in front of you isn’t just a man. This man is my best friend, my comfort, my stability, my heart, my children’s hero, our cheerleader, our provider. The well being of this man means the world to our family, and we are prepared to do whatever we need to do to maintain his quality of life. Please, please keep this in mind during your interactions with us. This man isn’t just a patient… this man means everything to us.

    You need to know we are on board. We are doing everything we can to educate ourselves about everything we need to know to help Jeremy. With that being said, we need your help. Please remember the internet is full of inaccurate information, limited information, contextual information, and terrifying information. Help us know how to filter it. Tell us where to go, what to read, who to talk with. Connect us to the resources. I promise we will do the work!

    Please remember how absolutely critical our time is with you; manage your time well. At this point, you are our only resource for information and strategies. Come to our appointments every bit as prepared as we do. Be on time. Review and become acquainted with Jeremy’s file before we walk in the room, leave space for conversation and our questions, and use every last bit of our time for productivity. We will ask questions, and we will have new information for you. Create your daily appointment schedule with this in mind.

    Please remember that you are not only a doctor; you are also an educator. Slow down, and explain things well. Remember that images help us understand, and give us the time we need to be able to ask clarifying questions. Never, ever make us feel guilty for trying to understand. Be clear, be concise.

    Manage your team well. We need your team to be well organized, and on the ball. My husband and I have enough to do. When you are changing medications, make sure they are called in. Don’t make us hunt down records. Don’t make us have to call to remind your staff about getting pre-authorizations. We will hold up our end when it comes to tasks, but don’t make us do your job too.

    This one is big– its HUGE. We don’t have many options. Often we are seeing you because you are all there is, and we can’t go to the Movement Disorder Specialist down the road. Don’t use that as an excuse to be mediocre. Don’t be just enough… be the best. The truth is, we may not have much choice in having you as our doctor, but you absolutely chose us. Remember why you chose us every single day, and use that to fuel your every interaction with my family. You hold a lot of power in our relationship. Don’t oppress patients just because you can.

    We want you to become a member of our family. You will see our vulnerabilities; you will see our strength. You need to know that I will do whatever it takes to get what my husband needs. I will be direct, I will be transparent. I will ask you a million questions, and I absolutely don’t care if you have answered them a thousand times before. You are the person we will depend on to help us make the best decisions for Jeremy.

    Lastly, you should also know that I am not sorry for any of these requests. This is, at minimum, the least that every single patient and their family deserves.

    “No one has ever become poor by giving.”- Anne Frank

    Shannon Sims

    #1246 Reply

    Fulvio Capitanio

    I’d recap all these concerns in a few short sentences.

    Dear MD Specialist,
    When we meet, don’t just look the way I move, listen to me.
    Now that you are listening to me, pay attention.
    Now that you are paying attention, care for me.
    Now that you care for me, be my partner in this journey.
    I need what you know about PD as much as you need what I know about me.
    Because you know a lot about many PD but now it’s time to learn about mine

    #1257 Reply

    Karen Jaffe

    I cannot thank you enough for including me in the conversation taking place between this fabulous gathering of PD advocates. And while I agree with the tenor of the underlying frustrations we all seem to have, I do not agree that we are not being listened to. As a member of the MJFF patient council, I am one of 20+ voices whose PD voice is not only heard but is listened to with respect, care and interest. And it is not just our voices but also the voices that live in our communities as we all serve as ambassadors for those not at the table. So please know that there are people listening and caring and who make it a priority to pay heed to all of our concerns, factoring them in as they attend to the mighty job of finding the answers.

    I remain hopeful.

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