Alzheimer's Doctor in NYC

Lucid

Hello, I am new to this board. My dh was diagnosed with Alzheimer's last week. We received our diagnosis from a doctor affiliated with NY Presbyterian but would like to work with a doctor from NYU Langone.  I'm wondering if anyone can recommend a doctor with whom they've had a good experience. I've seen Dr. Arjun Masurkar on the NYU Langone website and don't know if anyone has worked with him, or if you can recommend someone else.Thank you.

Jeff86

Earlier in our journey I brought my DW to the Pearl Barlow Center at NYU Langone.  She was seen by Dr. Thomas Wisniewski and clinical neuropsych Julia Rao.  

Diagnosis confirmed but no magic bullet by way of treatment, of course.  Standard advice:  Mediterranean diet, exercise, mental stimulation/puzzles to try to slow progression/preserve cognition as much as possible.   Did as much of this as we could, but disease progression has been cruelly relentless.

Access to clinical trials, if that interests you.  My DW was disqualified from participating in clinical trials, given her complex diagnosis (Cerebral amyloid angiopathy, brain aneurisms).

Lucid

Thank you. Did you find the doctor personable and compassionate? I realize that I have our Rx for Donepezil and this is what it is. But our doctor at NY Presbyterian does everything on Zoom and her bedside manner is just not there. It’s been such an impersonal experience. You can’t even ask a question without going through a web portal and waiting up to a week to get a general answer that only half answers your question. We are not happy with this dynamic and think we at least can have in-person visits and a somewhat compassionate doctor who isn’t waiting to get you off the Zoom so she can go to her next appointment.

jfkoc

There are times you want help faster than a week. No PA? No NP? 

Don't forget your PCP. They can also be very helpful.

Ed1937

Lucid, welcome to the forum. Sorry you had to join such a place, but this is a good one for learning, teaching, and just to have people to talk to who really understand. This is hard to find in the outside world.

Sorry, I can't help with the doctor. But I understand how you feel about virtual visits. We changed PCPs in January, and I found the virtual visits a little less than personal. But I had the opportunity to have in person visits, and I took them for myself. My wife will have virtual visits because the doctor knows about the problems getting her ready for personal visits. She will only have in person visits when/if necessary. With the in person visits, I feel like I'm getting to know the doctor, and he is getting to know me. It's a world of difference. I hope you find one who you will be able to build a relationship with.

Relish

I also have seen Dr Thomas Wisnieski for my husband and I felt he was a caring doctor. We would take the bus from New Jersey.  Did it slow down his disease.  Who knows.  What I do know is he is now in late stage Alzheimer's and has been on hospice for over two years. Dr W did give me hope which helped me function during the early stage of a very ugly disease

Lucid

Thank you very much for responding, Relish. I’m starting a new phase of this  journey (got our dx last week) in that two weeks ago my husband began thinking I am other people and therefore doesn’t want me (those other people) home. I really don’t know what I’m going to do. Everything is happening so quickly. That’s why at least having a doctor who has some compassion would be nice. Thank you for your feedback. I will keep you in my thoughts.

Jeff86

We saw Dr. W as a second opinion, and did not continue care there.  I found him to be reasonably sympathetic.  He was my DW’s then-neurologist’s mentor, so that helped in getting an otherwise elusive appointment.

We ended up with an Upper East Side neurologist—coincidentally, Tony Bennett’s neurologist, fwiw—who is very empathetic.  She is impressive—physically reaches out and touches patients, to which my DW is very responsive—and sometimes utilizes some non-conventional therapies like electrical brain stimulation.  (My DW freaked out at it, so that was a fail.).  Has published a couple of books that are realistic but upbeat.  Easy to get an appointment.  No insurance accepted, doesn’t accept Medicare.

Lucid

Thank you Jeff86