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Lonnise

"The purpose of Medicine" - and an MDS recommendation

6 posts in this topic

Hello Forum Friends:

As summer unfolds I find myself again logging in often and doing "research" about our unifying condition - the Parkinson's journey.  Thank you all for your courage to continue your journeys and share your experiences.  I wish you all the very best in pursuit of purposeful, worthwhile living!

As you may have seen in other posts, the MDS my DH and I finally got in to see at Johns Hopkins has moved to Las Vegas, and while I'm not opposed to occasional recreational gambling, my health insurance doesn't reimburse for cross-country travel for doctor's appointments so I can't justify trying to combine trips :P.  I am researching alternative advisors this month.  The name of a respected and highly recommended MDS at MedStar Georgetown University Hosp. has been suggested and is on my list of potential "candidates" (thanks Daven) as is another friend-recommended MDS associated with Annapolis Neurologists.  I am hoping to do some "background research" on at least 3 options for my DH and I to consider and then set up initial interview appointments.

As you may have noticed, my approach to medicine in life is quiet analytical and practical.  While I believe effective and ethical medical practitioners are deserving of great respect and consideration, I don't believe they are "anything more than" highly trained, intellectually intelligent advisors.  I will not invest my time or money with a practitioner who approaches his or her profession in a "Father Knows Best" style, nor do I want one who is the "Information Guru" willing to share an abundance of information and then "leave it up to us to decide what to do".   Both of these types of providers are worthy and available (in abundance), they're just not what fits for us.

I recently finished reading "Being Mortal" by Atul Gawande (and I loved it so much I'm thinking of buying a copy to keep as reference).  Below is a quote from this book that resonates soundly with me.  # 1 & 4 are questions I am specifically wanting medical advice and guidance in answering.

From Atul Gawande’s Being Mortal, Metropolitan Books, Henry Holt and Company, LLC 2014

Epilogue, pg 259

Quote

 

[The job of medicine] is to enable well-being.  And well-being is about the reasons one wishes to be alive.  Those reasons matter not just at the end of life, or when debility comes, but all along the way.  Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same:

  1. What is your understanding of the situation and its potential outcomes?
  2. What are your fears and what are your hopes?
  3. What are the trade-offs you are willing to make and not willing to make?
  4. And what is the course of action that best serves this understanding?

 

 

 

If any of you have an MDS you care to recommend in the vicinity of Maryland (yes Philly is an option but we don't have any friends or relatives living nearby with whom we could visit), and you think, based on the above, he or she might be a good "fit" for our needs, please message me.  Baltimore is about 2 hrs. from our home and near my Mother's apartment; DC. is also about 2 hrs. away and near many dear friends as DH and I used to live in Silver Spring, MD & work in DC; Annapolis is an hour away.  The JHU and GWU options appeal to us because they are NPF centers of excellence.  The Annapolis group appeals because of its proximity.

In the meantime, I hope something in this post provides value to any who read it and as always, thanks for being you and sharing part of your journey with us.

Cheers

LHG

Edited by Lonnise
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Lonnise:

Perhaps the MDS I see at Hopkins might be someone to check into.  You can read about him here:

http://www.hopkinsmedicine.org/profiles/results/directory/profile/8683575/alexander-pantelyat

He' super nice, extremely personable, very energetic, very well thought of, very much works with the patient, answers any questions, and is available by e-mail (returning e-mails in a timely fashion).

I'm thinking that he might guide you to someone good if he is not able to take any more appointments or if he feels another type of MDS could help better.

One thing to be aware of before you choose him is that though he works lightning fast, he gives each patient the time they need, so sometimes he can be backed up, so there may be a wait.

 

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Fantastic Linda, thank you.  I was hopping maybe there was another at JHU that would be taking over Dr. Mari's cases "quickly" but the practice has been very "unresponsive" and we're both getting frustrated with not having been able to even schedule a follow-up appointment since first seeing Dr. Mari at the beginning of February.

I really appreciate your response and information (I wondered who you were seeing since you used to work at JHU and had such great things to say about Mari).

Is a group still possibly gathering in September?  The first "annual" meeting of the "Parkville Parkies" :D?

Hope you are doing well and enjoying summer.

All the best.

LHG

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2 hours ago, Linda Garren said:

Lonnise:

Perhaps the MDS I see at Hopkins might be someone to check into.  You can read about him here:

http://www.hopkinsmedicine.org/profiles/results/directory/profile/8683575/alexander-pantelyat

He' super nice, extremely personable, very energetic, very well thought of, very much works with the patient, answers any questions, and is available by e-mail (returning e-mails in a timely fashion).

I'm thinking that he might guide you to someone good if he is not able to take any more appointments or if he feels another type of MDS could help better.

One thing to be aware of before you choose him is that though he works lightning fast, he gives each patient the time they need, so sometimes he can be backed up, so there may be a wait.

 

He's worth the wait - just know that going in😀

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Lonnise:

Thanks for recommending the Atul Gawande book. Just ordered it, and looking forward to reading. I'm afraid I'm on the wrong side of the country to return the favor w/ an MDS recommendation, but it sounds like you've already got a few good ones.

Best,

David

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My pleasure David, hope you find the book as worthwhile as I did.  No worries about the MDS, we'll find "another" one, it just takes tenacity and time.  All the best.

Lonnise

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