[00:00] Dr. Benjamin Greenburg: So the greatest part of the move was to get to work with Dr. Harder, she has been an incredible asset in the children’s programs. One of the really amazing parts of the move from Baltimore to Dallas was after six of seven rounds of drinks and heavy medication and a frying pan I convince Maureen Mealy to make the leap with us and move from Baltimore to Dallas and she was and is an incredible asset to our program and (applause from the audience) ya I can get it from you guys, and then for a variety of reasons had to make move back to Baltimore but we keep in close touch and she is involved with a variety of our patients and before she left she was the one that who knew how hard it was to work with me because I’m not an easy person to work with and wrangle things in and its constantly: “Greenburg focus, look here this is what you have to do right now don’t pay attention to that do this. So any one who got a prescription refill or something done it’s only because Maureen was making sure I was paying attention and when we were putting this symposium together I e-mailed and called her up and said I wanted her to give a talk on “How to Manage Your Care Team” and she said: “What? And I said I want a talk on How to Manage Your Care Team. And she said: “Exactly what are you talking about? And I said: “Everything you do every time you are on the phone with patients counseling them on how to interact with their physicians, how to interact with their physiatrist their neurologist, their urologist, their internets, physiatrist and how to get these group of schizophrenic physicians to work together in some sort of way which is what you do day in and day out and I want you to teach everyone how to do that and she thought about it for a while and energetically agreed. And this is the biggest challenge with individuals with rare complex disorders because physicians are not easy to work with we have our own personalities we con to the exchange with our own baggage and physicians need you to make it easy. The analogy that I use is playing ball you don’t want to give your physicians curve balls you want it easy for them to hit it out of the park and have success but it is not an easy thing for them to do and Maureen has figured out all the tricks on how to do it so the next 30 minutes she is going to enlighten us on how you guys should be managing your care team, so Maureen …

[02:46] Thanks Dr. Greenburg, Hi everybody ya it was kind of a daunting task to try to do this because I didn’t know how to wrap this up into a tiny little bow and present it is something I kind of do and it wasn’t easy for me to figure out how to present so I don’t know if I have accomplished the task or not so I apologize in advance if I didn’t. But I decided to draw an a parallel between the health care and a football team since as some of you learned yesterday in a moment of great humiliation Dr. Carlos Pardo may have mentioned that I am a very great football fan in his transverse myelitis talk so it segued well into to my presentation ironically so here goes.

[03:40] Your role as the patient or family members is the quarterback as that role you are the one that has to keep the team connected you are the one that has to make sure the physiatrist knows about the plan from the neurologist who knows about the plan from the urologist who knows about the plan from the psychiatrist etc. You are the one calling the plays, that said there needs to be a coach one person who is the person the point person, it can be your primary care it can be your neurologist your PM&R doctor whom ever there can be only, not to confuse analogies there can’t be to many cooks in the kitchen you have to have one doctor that you trust being the coach but from there it’s your responsibility to kind of connect all these people and that coach needs to be able to work well with others and kind of manage things for you as you are directing the rest of the team.

[04:43] So what do you look for in a health care provider? Someone who is engaged and interested. A lot of people in this room and I am betting that most everybody took a long time to get to the diagnoses that they all have, it wasn’t an easy process for any of you and hopefully you all found maybe you went through several people before you found but hopefully you all found somebody who ended up being invested in your case and hopefully you all came to the conclusion that it came to be much, much, much more to your benefit then finding a Harvard grad. And so I hope that you all do realize the important of finding someone who is passionate and willing to take on your case. But that said we cannot minimize the importance of find someone who see a lot of your diagnoses you are dealing with a rare neuroimmunological disorder and so somebody who sees your diagnoses is somebody who is going to know the difference between treatment failure and mismanaged medication or somebody who is going to know if a symptomatic medication didn’t work for you there are ten other medication that may and is also going to know what research that may or may not be out there that could benefit you and so it’s important to look in your area and I know that not everybody has that accessible to them who lives in Baltimore or Dallas or where ever and so at least be able to touch base with them with somebody to make sure you are on the right track that’s important to do.

[06:20] Somebody who make himself or herself available, e-mail is great, having a nurse is great, particularly I am obviously biased having a nurse who knows the disease process the way the doctor knows the disease process is incredibly important, that means it doubles your odds of hearing back twice as quickly. Somebody who appreciates feedback and advice from other practitioners and I am looking at you and anybody who tells you they don’t want you to get a second opinion is doing you a disservice because if one of my patients said they wanted to get input from another practitioner I would welcome that because that means that somebody else is contributing to a plan and that is only benefiting you potentially and so if somebody else is going to think of something else that is going to help you then that’s great! And if your practitioner doesn’t want to get advice from somebody else then I have to question them as to what is wrong with them that they don’t want to hear about somebody else’s take on a situation particularly a rare neuroimmunological disorder where other people may have another way of looking at this diagnosis, so I had to through that one in there Diana.

[07:44] So: How to prepare for your appointment. It is well known that an educated patient gets better health care they just do. If you come into an appointment with this much knowledge (She hold her hand at chest level) then your practitioner will get you up to here by the end of the visit. (She holds her hand at eye level) But if you come into a visit with this much knowledge, (holding her hand a eye level) then your practitioner with get you up to here (holding her hand above head level) obviously it is much better to have this much knowledge (holding her hand above her head) at the end of the visit then this much knowledge (holding her hand at chest level) the more educated you come into the room the better. Obviously, the internet is a great tool and a very dangerous tool all at the same time because information can be accurate and inaccurate and you don’t always know the sources of the information and will go over the websites and you’ve seen most of the websites and all of these websites over the last couple of days and so I encourage you to go to these sites and other credible site as opposed to any site because there is always inaccurate website everywhere.

[08:55] Be aware of appointment timing and what I mean by this is doctor have and between generally speaking in most practices have 15 to 30 minutes for a return visit and 30 to an hour for a new patient visit. That is not a lot of time, you all know how complicated your diagnoses is so you know that your sequalae that come from your diagnoses can not be covered in that amount of time and so given that you can imagine how backed up the day gets and so when you are frustrated in the waiting room thinking this person is not respecting my time just try to acknowledge that it is not them that made the decision as to how long the visit should be and if you look at it from the perspective of there not trying to stay on schedule they are trying to do right by the patient by treating the person in the room rather than paying attention to their schedule that means when you come into the room next that they’re going to be treating you the same way and making sure their taking care of you rather than worrying about their schedule that might give you a little bit of insight as to why it takes a little bit longer.

[10:15] That said if you schedule the first appointment of the day then that is always going to alleviate any worries about having to wait for time. Same way if your doctor does take a lunch break in the middle of the day which most of the doctors I’ve worked with don’t so I can’t relate to that. If your doctor does then a lot of times that can be a catch-up time and after lunch is a good appointment time as well.

[10:42] Same way last appointment of the day is often a good appointment time as well because they’re not worrying about I have four more patients wait out in the waiting room that are cursing at the medical office assistance that are waiting to be seen because there is nobody else waiting to be seen you are the last appointment of the day so those are some considerations on how to schedule yourself and thing you can request when you are making your appointments. Make sure the doctor has received all of your records they almost always have not and the one thing you need to pay attention to is MRI’s you can’t fax over MRI’s most of the doctors here don’t just want your report of your MRI they want to be able to look at the films themselves it’s very important that really it’s important that you check that you have the MRI and chances are you are going to have to go the facility yourself and have them burn a copy and bring it with you. That’s nine times out of ten the way to get things done the MRI.

[11:46] Write out a list of your med’s including the dose and including the over the counters herbal’s and vitamins and all that sort of thing. You are giving me far to much credit when you tell me you are taking the oblong pink pill. I don’t know what they all look like, don’t even come close to knowing what they all look like and so in terms of being able to titrate your medication if you telling me you are having pain and you tell me you are taking amitriptyline but you don’t know if it is ten or a hundred that is a world of difference in how to titrate that so please, please if you write it out and make a list that I can keep with me or the doctor can keep with him so that when he is typing out or she is typing out the note that’s perfect.

[12:36] Think about what you want to talk about and we are going to get into that a little bit more. So if you think of our analogy if you think of the neurologist as the wide receiver then it’s his or her job to catch what thrown by you. So he or she has to catch the pass but you have to make it a catchable throw that’s your job. And there are many things you can do to make that happen. The first one is to write everything down, keep a diary, keep a journal, write down questions, write down symptoms, write down whatever you want, not so that you can hand him 10 pages or her 10 pages and have them read over it because again we are talking about 15 or 30 minutes and that not the best utilization of your time, it’s really for you to organize your thinking so you can read over your journal or your question or what have you in advance and that is what you can see what is impacting my life and from there you can prioritize what it is you want to discuss with your practitioner and that brings us to number two: Prioritize.

[13:53] So as the quarterback you can either choose to throw the wide receiver the ball whatever it is is your priority whatever it is that is impacting your life or you can chose to throw the wide receiver 10 balls or you can say I am having issues with sleep and pain and Spasticity and mood and bladder and five other things and then let them determine what they want to address and it may not be the one that is impacting your life but clearly they can’t address all ten problems so they are going to choose which ball they want to catch it may not be the one you really need to focus on and so have more frequent visit may be what you need until you get everything sorted out. The other thing if you have this many things going on we can’t start you on medication to treat these different problems any way that is irresponsible.

[14:57] So, lets figure out what is bothering you right now maybe it’s fatigue let’s say it’s fatigue. The fatigue that what is interfering with my ability to interact with my family to do my job to cook diner to do whatever I want to be doing, that’s the one that is killing me right now. OK so now it’s the neurologist job to take the ball and run with it so they figure out they should be asking you questions: “Are you sleeping at night? “ “No I am waking up every two hour to go to go to the bathroom.” So then let’s treat that, so we get your nocturia under control so now you are sleeping it ends up because we have taken care of your inability to sleep and your bladder and now your day time fatigue is better and your pain is better and your mood is better and your Spasticity is better and your every other symptom is better.

[15:56] And so the whole point is trying to get these symptoms together by treating whatever is bothering you right now and so that’s the wide receivers job. The next thing is to be honest, the doctor is an authoritarian and so many people look at him or her in that manner so as a result you want to look good to the doctor so you don’t want to tell him or her that you are not being compliant with your medication. That’s a bad decision it will only interfere with your ability to be treated well because if you are not taking your medication and it’s either because you are not taking it or there is some side effect that’s preventing you from taking it being compliant with it and it’s something that we can figure out and you have some kind of relapse because you are not being compliant with your medication and we think it’s because you are being compliant with your medication and we could have prevented it by figuring out how to make you compliant with your medication or we could have changed therapies that you are on those thing could have be addressed earlier on and you did yourself a disservice by not being honest and there was something going on with you taking the medication to begin with.

[17:14] If possible bring somebody with you to the appointment for several reasons. Reason number one is that a: it provides another historian. So if you are not always able to provide all the details and there is somebody else in the room that is chiming in, that can be helpful. Number two: it gives a second set of ears listening to the doctor plan. And number three it gives somebody else who is invested in the plan that the doctors and you have come up with and so that can be helpful down the road when you are really trying to especially with rehab plans and thing that really need to be focused on at home that kind of thing.

[17:59] So speaking of rehab the physiatry the rehab team I think of analog is kind of the running back they’re the ones that are really pushing through trying to gain every single yard and our next speaker is actually a neurologist and physiatrist and he is going to be spending time on this so I am going to he’ll be doing much better with this so. I do want to empathize as doctor Pardo did yesterday in his transverse myelitis talk that you will only that you will only if you have had an injury to your spinal cord or to your brain doing rehab is bar none the best thing you can do to recover function and so you will only get out of rehab want you put into it and so it infinitely important that you do and if you choose not to then you will not recover as much as you had the potential to do.

[18:58] So I think of the insurance company as looking down on us and laughing they are kind of the one that are managing thing from up above and the take home message is point number 3, not everybody knows they can do this but you can be assigned a case manager from your insurance company so you all whether you had a recurring disease like Multiple Scleroses or NMO or whether you had a one hit to your central nervous system such as ADEM or idiopathic transverse myelitis either way you will have sequalae from this diagnoses for a long time to come. And so a case manager allows for you to have a point person from your insurance company and so your doctor has a point person from within your insurance company who is kind of facilitating thing for you, advocating things for you making sure thing don’t fall through the cracks, because lord knows the doctor’s office loses your fax for prior authorization every day and I know it. They make sure things go a little bit more smoothly than they otherwise would and not everybody knows that, that is a resource that you can elect to have, in most situations you can.

[20:15] And then don’t forget about your nurses, they can be your best friend, your best ally they’re usually the first pass in terms of the people that are doing most of the triage in terms of with the office and they will advocate for you and they protect you in a lot of ways just like your offensive line protects your quarterback. It good to be nice to your nurse just because they it’s the same thing when the defensive line gets through and sacks the quarterback it’s not a good thing, so be nice to your nurse.

[20:57] So getting back to those website that we were talking about these are the ones you have been seeing all weekend long these are the one you should look up if you haven’t yet. (The websites are: Transverse Myelitis Association – Myelitis.org, Guthy-Jackson Charitable Foundation – Guthyjacksonfoundation.org, National Multiple Sclerosis Society – Nationalmssociety.org) And when I say these are the ones that will educate you I do mean the title: Stay Connected. Obviously, you are all the ones interested in staying connected because you are here so I am preaching to the choir but to give you an example to give you a couple of examples. I have somebody e-mail me about a patient somebody that’s not in our clinic but apparently he has Transverse Myelitis and his wife passed away recently and he wanted to speak with somebody this was just a few day ago he wanted to speak with somebody so a friend was e-mailing me on his behalf and he wanted to speak with somebody that was in a similar situation and I don’t know much about his disability I don’t know about his life circumstances other than the fact that his wife had just passed away and so I said your best resource is Sandy Siegal so of course call up Sandy Siegal on his home phone number and he is already connected with somebody that’s a couple a days ago and I’ve already gotten a response that thanks we are all hooked up and gotten it done. So they will really keep you connected Sandy Siegal as you have heard from his story yesterday will do great things for you.

[22:20] And along the same line we have a patient doctor Levi and I have a patient, Lisa, who has NMO and she is on a patient support website for NMO I wish I could tell you what it is she is supposed to e- mail it to us but she has not but it is pretty amazing because she doctor Levi is educating her she is on Rituxan he was educating her we have to follow your CD-19 as soon as your B-cell line we have to repopulate, and she is like: “I know my friend in Florida told me.” And the friend in Florida as it ends up is somebody she met through this website and then we told her something else and she said my friend in Pittsburg told me. She really relates to these people as her friends she talks to these people on line every single day and she can’t she doesn’t talk about her next-door neighbor in Virginian in the same way because the person can’t relate to her in the way her friend in Florida and in Pittsburg can. It’s really amazing what staying connected to people who have the same kind of life circumstances as you can do for you and so I encourage you to do that.

[23:31] So remember it’s your health and you call the shots and I am going to leave you with this last point that a quarterback can throw the ball but sometime the quarterback has to run the ball himself or herself and so remember that and sometimes you have to take the ball into your own hands do with it what you will so that’s it.