We go to our internal dr. (have had him for 15 years.) J. also goes to the V.A. Dr. The only reason we really started going to the neurologist was because the V.A. wanted him to o.k. the aricept and namenda. For two or three years now the V.A. dr. has been renewing the prescriptions . The neurolgist does absolutely nothing. Just ask a few questions. I feel like it's a waste of our time and Medicare's money. The other two doctors do everything for him. I'm not sure what stage you'd say he was in. The mornings are really bad. After he's all dressed, he's pretty good. Then again at night, it's the "hiding the wallet bit from those kids" again (No kids around) I work three days a week. He was starting to ask to go with me to work. I have him in Day Care now on the days I work and he seems to be enjoying it. We go to our regular dr. next week, but I wondered what you all thought.
The only reason I can think of to see a neuro regularly is if you're afraid your husband will develop a serious behavioral problem and you'll need meds for that asap. Even so, I'd think a qualified PCP would get help faster by calling a neuro for a consultation than by you trying to get an appointment.
Here is my comment from a previous post. I agree with Sunshyne that a good PCP could get help faster than trying to go through a specialist.
"Since there is not much a neurologist, or any other doctor, can do for AD other than "palliative care", I have found the best care to be by the family doctor (Internist or FP) as long as he/she is willing to discuss the disease. At least they take the time to answer questions, while specialists tend to be very narrow in their thinking. I took my wife to a neurologist for the diagnosis, but then, when he seemed uninterested, I dropped him and now deal primarily with her family doctor.
Note: I DON'T try to treat her myself, although I do make suggestions to the doctor."
I agree...use the neurologist for the diagnosis. Then go with who you feel the best about. I think the dr. is supposed to function as a member of the team, that's how I look at it.
We go to the neurologist specializing in AD because Sid is still in what is considered "early stage", and is young enough (65 - diagnosed 2 years ago; had symptoms for 3 years prior to that) that the neuro thinks he can be helped with the trial drugs. We have seen an improvement since the first BAP III infusion.
I do have something to say about the family doctor that I have said before, but it bears repeating. When we lived in Massachusetts, it was our family doctor who nailed the diagnosis from the very beginning. Even after the neurologist and neuropsychologist he referred us to said no to AD, the family doc still thought it was. He was right, of course.
Thank you for all of your answers. My husband is 84. Our PCP know him very well and I have a lot of confidence in him. Even the V.A. doctor gives a lot of concern and time. I believe I'm going to cancel the appointment with the neurologist.
After visiting the neurologist this a.m. w/hsbd, I, too, am thinking of quitting the neurologist. I searched this site for this topic and just typed a paragraph about background and why, and I hit add your comments, and my dial-up dialed down. So, I'll not input all of that, but I do want to say, I was unimpressed and asked if it was necessary to come back since hsbd isn't aggressive, we know where the dementia is going, he can take care of himself. Doesn't drive, play Boggle, Password, dominos, etc. anymore, but who cares. "I prescribed the meds and want to monitor them." He did say we could come back in 4 months. Hsbd didn't talk much (how could he; I was on a roll), but did say "I have dementia." We'll see how things are going in 4 months.
Zibby, when I decided that my husband's first neuro was simply hopeless, I didn't ask her if we should continue seeing her, I asked my husband's PCP. He said that now that my husband had been diagnosed, there wasn't much the neuro could do that he couldn't.
My husband, like yours, isn't aggressive and he is still doing pretty well. And the neuro knew less about AD than I do -- no understanding of the conventional AD meds, let alone other meds that might be needed if he develops behavioral problems. We weren't doing anything but making twice as many trips to doctors as needed.
So we stopped seeing the neuro, and the PCP started prescribing my husband's meds.
That PCP has now disappeared on us (the people at the clinic where he had his practice won't tell anyone where he went -- probably because they know we'd all follow him), so I had to find a new PCP. This time, I found a geriatrician who is associated with the AD research center. He can do almost anything we may need, but he did ask to have my husband consult with a neuro who is also associated with the center when I asked about adjusting a med he's on that's experimental. This new neuro is great, I'm quite happy consulting with him when needed.
My wife is in late stage AD. Her doctors know her case well and do not require us to come in to renew prescriptions. Of course I let them know if there are any new developments.
Since it seems we are at some kind of plateau, when it was time recently to have the appt with the neuro, I called and cancelled. Told the office, DH was getting along about the same and the receptionist let me know that I could just call as 'needed'. I do intend to keep the regular appointments with the PCP who is a specialist in geriatrics..so that should cover nearly everything for now.
After a few neurologist visits, I realized there wasn't very much he could do except prescribe meds. When we were trying to FIND a diagnosis, it was different.
My DW's Neurologist must be an exceptional Doctor, I still find it helpful to take her back every three or four month. She has TIA's along with her other Dementia issues, he keeps a close check on her blood and keeps the Coumadin well regulated. He has been able to keep her AD meds fine tuned and has helped us through many behavior and anxiety issues by tweaking meds. I also run any medications prescribed by the other Doctors involved in her care by him. He was a tremendous help when she was hospitalized, he has been a genuinely concerned advocate for her.
He has been a great help, at this point there is no way I would take her out from under his care. I have recommended him to several people.
Thanks, again, for information/experience that supports my decision. I'll revisit the issue when behavior/health changes. Neurologist is 45' away PCP is local, and we'll keep in touch w/her.
My own two cents is that with AD it is a neurological disease. at some point if they have other neuro problems along the way its good to have a neuro on board to consult and have them familiar with your spouses history and meds. in my case, my new young phd has helped alot with rx med for myoclonous jerks that started a yr ago. he also was in agreement the AD meds were detremental to DH health at this point of journey. so all in all we do see ours every 4mo as well and update meds as needed and a general counsel to see if there are any changes-which i am glad i have someone who knows what works for him. even if you dont use them but once a yr i think its a good idea to have someone just in case an emergency arises. Divvi
We quit seeing the neurologist last summer. Claude had been diagnosed with AD several years ago. A new RN was assigned to him by the home health agency and she asked if he had Parkinsons. His PCP at the time said no he didn't, but as a way of CYA (which he was good at), referred him to the neuro. He did diagnose him with Parkinsons and gave him meds. The meds helped and we went back to see him every two months for a followup.
After I fell last summer and wasn't able to get him to the neuro, we decided not to go back. Now that he is on Hospice, the Hospice doctor (who is also his PCP now) is handling the scripts for his Parkinson's meds.
The only specialist he sees now is his cardiologist. His office monitors his Coumadin and PT/INR levels. I now have a machine and can to the blood test so thankfully, don't have to take him to the Lab every week or two for a blood draw.
Last year I changed his Psychiatrist to athe Specialist at the Alzheimer and Memory Disorder Clinic. From the get go he has impresswed me thoroughly with his approach. The caregiver is the "most valuable tool" in his arsenal for treating his patients (his words). We will approach testing on an event drivien basis. And he asked me what I thought our schedule of visits shhould be. I said we'd been doing quarterly visits up to now, but winter is the hardest to keep because of weather concerns and disabilities. He agreed to quarterly with the posibility/probability of skipping winter or doing a phone update. Also, I've been instructd that if any crisis were to crop up (ER visit) to call the hospital and havbe him paged. This would give him an immediate heads up. I think it would also help the ER move sooner to care from analyzing from scratch. I've had him in with a suspected TIA, provided Dx and med list, and they still started as though his was a totally new case with a blank chart. Finding the right Dr.s is really hard, b ut when you do, you're blessed.
briegull, did you actually ask me if I Googled???!!!
Yeah, the man has disappeared off the face of the earth. (Actually, a lot of our clinics and medical groups don't have info on their doctors out where a search does much good. Plus many of them only update once a year, if that often. And now that I've got a terrific geriatrician wired in with other AD research doctors, I wouldn't want to go back to the dear PCP even if we did find him. He was much better than the previous doctor, but not as wired-in as our current geriatrician.)
I've stopped taking my husband to the neurologist. We will return if the family doctor says he wants us to do that. I've always had the family doctor control all drugs and all regularly scheduled blood tests. The cardiologist liked it done that way, so that's what I kept doing as we added different doctors. At this point I'm considering a cardiologist appointment because he does look at the pacemaker tests, but outside of that, no.
jimmy, your LO has TIAs. That means the neurologist is checking out a disease where it makes sense to use him. My husband has never had a stroke, and once you know it is dementia, and what kind of dementia, there really isn't anything they can do about it at this point in the game.
You are right Starling, the TIA's are part of the reason we keep seeing the Neurologist. I have had so many sorry experiences with Internal Medicine types and PCP types who are clueless about AD medications and how to use them. They also fail to realize that many of the commonly prescribed medications counteract the effects of AD meds. Many don't know how to deal with AD patients. They can complicate matters.
As Divvi noted AD is a neurological disease and IMHO the Neurologist is best equipped by education and experience to deal with AD. We are fortunate to live in major metropolitan area and do have very good medical care available to us. The Neurologist's office is only 3 miles from our home. I am aware that not everyone lives in a major metropolitan and access to specialized medical care is limited, in these cases you have to work with the best resources you have available to you.
The best doctor costs you no more than the worst, I always try to find the best and most capable doctors I can.
Well, Sunshyne, I know you are careful to get real certified data, not hearsay, and heaven knows Google will pull up a lot of hearsay, so I truly thought that maybe it hadn't occurred to you to use google as opposed to medline or whatever. Sorry! ;-)