Need NYC Doctor Reccomendations

Brooklyn74

Good Afternoon All, 

I know that everyone's insurance is different, but I was hoping for at least a place to start. I need to find my mother a good neurologist. in NYC.... Her current doctor talks at her and not to her, she speeds through appointments and comes unprepared, and doesn't really seem to understand that having dementia is scary. 

Looking for someone in NYC who is an intellectual, someone who is smart, and kind, patient, calm, great bedside manner who understands that being in this position is scary. Hopefully someone whose affiliated with a good hospital. Any recommendations are greatly appreciated. 

dayn2nite2

Sorry to say, but the kind of neurologist you're looking for is rare in that specialty.  In a past life I worked for neurologists and neurosurgeons in many places and my experience is that the people who are attracted to diseases of the brain are odd, not warm, and talk at all of their patients.

Especially in neurology, dementia is looked upon as a hopeless disease that they can't help so they scribble the diagnosis code, send a prescription to the pharmacy and get you out the door.

Unfortunately, all of that is true.  Every single one I've interacted with was weird and cold.

Iris L.

My neurologist is not cold or weird, but we are in California.  

Look for an Alzheimer's Disease Research Center.  There should be several in a place as big as NY.  Also, you can call the Helpline and ask to speak with a Care Consultant to get a reference close to you.  

You will probably have to use subterfuge to get your mom in for the appointments.

I posted on your other thread.

Iris

Rick4407

My experience in KY is pretty much what day2night2 said.  The exception has been the Nurse Practicioner that the neuro shuffled my DW off to.  She was competent, communicative and good with prescribing effective meds.   Good luck.  Rick

Brooklyn74

Thank you for the kind words and insight. The hunt for a good neurologist continues, one that my mother can hopefully see before year end. It's sad how hard it is to get an appointment with a good doctor. I will look for a research center too.

tigersmom

Brooklyn, two of the big centers here are the Pearl I. Barlow Center for Memory Evaluation and Treatment at NYU Langone, and the Cognitive Health Center at Mt. Sinai.  My husband was diagnosed at the Barlow Center. I would not characterize his neurologist as warm and fuzzy, but he is very smart and we got a conclusive diagnosis in two weeks' time. You will wait for an appointment at either place, but ask to be put on the cancellation list in case something opens up sooner. NYU has a pretty good support system for caregivers, too, that will be available to you if you live in Brooklyn. Good luck to you.

harshedbuzz

Brooklyn-

I am sorry you aren't happy with her care. 

Has your mom had a complete workup and diagnosis yet? If not, I would take a look at the groups tigersmom suggested.

What are you hoping to gain from changing doctors? Do you want someone to prescribe psychoactive meds, explain what's happening to her to her/you, or help her match with medication trials? 

I had my own dad diagnosed at a similar medical school affiliated memory center after he was discharged from their teaching hospital after a psychotic episode.

While I was pleased with the comprehensive nature of the diagnostic process, the care after is much as you describe. I wasn't dazzled by the compassion of the neurology team in the hospital. They were a lot more excited about the potential for dad having a prion disease and he became a whole lot less interesting when he was identified as having Alzheimer's and an alcohol-related dementia which is kind of sick when you think about it.

The neurologist to whom he was referred at the memory center wasn't much better-- he found dad's alcoholism frustrating and had no concept of the dynamics involved. He would threaten dad with increasing dementia and incontinence if he continued to drink which made no sense since dad also had Alzheimer's so abstaining wouldn't prevent those. TBH, he was pretty damned judgmental with mom and I during the few brief appointments we had like we were pouring Chardonnay down dad's throat. The last time we went mom and dad got into a fight over something he said. The doc left and sent a social worker in to shut that down. 

After the second follow up, I told my mom we were done with the practice. The drive into the city wasn't worth what we were getting out of the appointments. They did have some good resources including a Memory Cafe but we were too far away to really access that.

I found dad a geriatric psychiatrist who was amazing. He understood dementia and the addiction piece. His chairside manner was warm, respectful and engaging. Dad looked forward to appointments with him and they start the appointment with jokes in Yiddish which was a surprise as dad was an Irish-Catholic. 

In your shoes, I would consider a gerontologist for her care. They typically work as a PCP for the elderly and will be well versed in dementia. If you think, she needs psychoactive meds for anxiety, depression or hallucinations, I would add a geripsych to the team.

HB

Michael Ellenbogen

This is old information  but the doctor is good. 

Liana Apostolova is running a studyy looking at Early Onset AD that is not familial

The info for the site in NYC is listed below

Columbia University    Recruiting
New York, New York, United States, 10032
Contact: Betina Idnay    212-342-5615    [email protected]  
Principal Investigator: Lawrence Honig, MD, PhD     

Name of the study is

Longitudinal Early-onset Alzheimer's Disease Study Protocol (LEADS)

Web Site

https://leads-study.medicine.iu.edu

Elio52

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fenney18

Hi Brooklyn74. Running into similar issues here - our mom moved back to NYC this year and has mild cognitive impairment, definitely worsening. Having a hard time finding a neuro/psych for evaluations. I appreciate all of the recommendations here - and will share if we find anything helpful. Good luck.

Brooklyn74

Happy (?) Saturday Everyone, 

Thank you all for the advice. I'm looking to change my mom's doctor, not all because her current neurologist lacks compassion, although that's part of it, it's that she has horrible bedside manner. She talked at us, rushed through the original test, didn't even know what tests my mom had before we got there (clearly she didn't look at her chart), and didn't bother taking the time to really explain anything to my mom when she was asking questions, just  blurted out, you have Alzheimers and you could for a variety of reasons and then just started writing on a board, but I couldn't even read what she was writing. It just wasn't the right fit. 

She also clearly has Anosognosia and it's creating such chaos and exhaustion. It's a fight about everything. She doesn't even notice that she can't remember where her favorite places are. She just tells me she hasn't been here often or in a long time so she doesn't remember. Tonight, she's yelling at me because I was trying to explain something about the oven, and she is angry I'm critical, just telling her how to turn it in. So she gets mean and I walk away. Then she says she's sorry (RARELY) bc she just doesn't know how to use this type of oven. 

Blood, Urine, Cat Scan and MRI have all come back fine. Clearly though there is confusion. How sad is it that I was hoping for a stroke, something to explain this out of the blue disease. Now she definitely thinks I'm making up memory issues, she thinks she's totally fine. There is no way this is fair that I've been dealt with two sick parents with the same disease. It's NOT FAIR! I took time to care for my Dad and I missed my mom getting sick. I never learned her favorite recipes or how to cook her sauce. 

I have never felt so hopeless in my life. I can't lose my mother. She is literally the last family I have left. And to top it off our house was destroyed and all my family photos were ruined, so now I've lost literally almost all of my history in 1 year. And, I am so overtaken by work and responsibility and getting my parents help, that I am losing time with them. She's cooking and I can't relax and just enjoy the time.

I called NYU, and no one there takes her insurance, neither does NYP or Columbia. But, I did get a connection at Mt. Sinai. They do things interestingly there. A triage nurse meets every patient for 90 minutes, and reviews all previous testing. Then she decides what's next. After speaking with me, the nurse decided that my mother would be better off the starting with a 1 time visit with an MD who specializes in Geriatrics. The nurse said she was really good at what she does, and that my mother could meet with her one time for a proper evaluation and the doctor would review her tests and then determine next steps. I told her I was worried that if we waited for that apt (told in April), that when I called the nurse back, the next apt with a Neurologist may be November (it's now September). She urged me to take the apt and then we would deal with that after my mom meets with the Geriatrician. I took her advice and hopefully this is the right path. 

Now the issue is getting my mother there. Do I cancel the apt this week with the bad neurologist because my mother dislikes her and ask her to see the other doctor in April with me? My mom did say she wanted to go to a better hospital, and Mt. Sinai is good. Do I tell her I'm cancelling and about the new apt or just do it? I hate having her wait for an apt when she has one this week, but I'm worried it will put us 10 steps back because my mom will get angry. I'd rather have her see a doctor she likes and trusts. Also, we have the MRI results, so I'm not sure what this neurologist would do at this moment anyway. I can't see her putting together a care plan.

harshedbuzz

Brooklyn74 wrote:

Happy (?) Saturday Everyone, 

Thank you all for the advice. I'm looking to change my mom's doctor, not all because her current neurologist lacks compassion, although that's part of it, it's that she has horrible bedside manner. She talked at us, rushed through the original test, didn't even know what tests my mom had before we got there (clearly she didn't look at her chart), and didn't bother taking the time to really explain anything to my mom when she was asking questions, just  blurted out, you have Alzheimers and you could for a variety of reasons and then just started writing on a board, but I couldn't even read what she was writing. It just wasn't the right fit. 

That sounds really unpleasant. Dad's neurologist's bedside manner was similar, but at least he gave mom and I a chance to speak openly while dad was off with the neuropsych being tested. 

That said, if you don't want a doctor to use the "A" word in front of mom (may families have strong feelings about this), communicate that ahead of the appointment. 

She also clearly has Anosognosia and it's creating such chaos and exhaustion. It's a fight about everything. She doesn't even notice that she can't remember where her favorite places are. She just tells me she hasn't been here often or in a long time so she doesn't remember. Tonight, she's yelling at me because I was trying to explain something about the oven, and she is angry I'm critical, just telling her how to turn it in. So she gets mean and I walk away. Then she says she's sorry (RARELY) bc she just doesn't know how to use this type of oven. 

This is hard. It sounds like your mom is in the middle stages with her disorientation to familiar places and inability to work appliances and electronics. I had a similar experiences with my dad. He was unable to ever understand that he was the one having the problem. He bought 5 laptops in 6 months as he was losing his ability to use computers. Once I was driving him to his geripsych which was in a town he was in weekly for work. When I pointed that out making conversation he swore he'd never been there. Mom couldn't let it go, trying to jog his memory to which he said "well, if I was, these are all new buildings". The street we were on was lined with beautiful old Victorian homes-- not so new.

Blood, Urine, Cat Scan and MRI have all come back fine. Clearly though there is confusion. How sad is it that I was hoping for a stroke, something to explain this out of the blue disease. Now she definitely thinks I'm making up memory issues, she thinks she's totally fine. There is no way this is fair that I've been dealt with two sick parents with the same disease. It's NOT FAIR! I took time to care for my Dad and I missed my mom getting sick. I never learned her favorite recipes or how to cook her sauce. 

I am so sorry you are living this with both your parents. That is so so sad. And so stressful. It's pretty typical of PWD to not recognize their cognitive losses. Even when a PWD will comment about memory issues, they don't tend to recognize the personality changes, executive function deficits, lack of empathy and apathy that are also present in dementia. It makes taking steps to keep them safe difficult and unrewarding.

I have never felt so hopeless in my life. I can't lose my mother. She is literally the last family I have left. And to top it off our house was destroyed and all my family photos were ruined, so now I've lost literally almost all of my history in 1 year. And, I am so overtaken by work and responsibility and getting my parents help, that I am losing time with them. She's cooking and I can't relax and just enjoy the time.

I'm so sorry. That's hard.

I called NYU, and no one there takes her insurance, neither does NYP or Columbia. But, I did get a connection at Mt. Sinai. They do things interestingly there. A triage nurse meets every patient for 90 minutes, and reviews all previous testing. Then she decides what's next. After speaking with me, the nurse decided that my mother would be better off the starting with a 1 time visit with an MD who specializes in Geriatrics. The nurse said she was really good at what she does, and that my mother could meet with her one time for a proper evaluation and the doctor would review her tests and then determine next steps. I told her I was worried that if we waited for that apt (told in April), that when I called the nurse back, the next apt with a Neurologist may be November (it's now September). She urged me to take the apt and then we would deal with that after my mom meets with the Geriatrician. I took her advice and hopefully this is the right path. 

That sounds like a good approach given that your mom has done considerable testing already. I suspect if your mom truly needs to see a neurologist (there's not a lot of urgency with dementia as there's nothing much any doctor can offer) I suspect the geriatric specialist's office can get your mom seen earlier. FWIW, after our last appointment with dad's neurologist, I had decided to stick with his internist and geripsychiatrist for care and ditch neurology. Once we had the diagnosis, they had nothing to offer.

Now the issue is getting my mother there. Do I cancel the apt this week with the bad neurologist because my mother dislikes her and ask her to see the other doctor in April with me? My mom did say she wanted to go to a better hospital, and Mt. Sinai is good. Do I tell her I'm cancelling and about the new apt or just do it? I hate having her wait for an apt when she has one this week, but I'm worried it will put us 10 steps back because my mom will get angry. I'd rather have her see a doctor she likes and trusts. Also, we have the MRI results, so I'm not sure what this neurologist would do at this moment anyway. I can't see her putting together a care plan.

That's what I would do. I would be her ally in the dislike of the neurologist and present the new doc as a second option because you didn't like what the first one said about her. My dad made fun of those with mental health issues (Oh, the irony), especially those who sought help so i thought getting him to a geripsych would be impossible. But I flattered that daylights out of dad along the lines of him deserving world class care and it went really well. 

Wishing you better luck with all of this going forward.

HB