I am wondering if anyone has had experiences with the LO's PCP, not specialist, or neruo, but the PCP. For the past couple of visits, I have come to wonder what I am doing there with DH when he has his appointments with his PCP. After the first few banal exchanges, then he gets down to business. First thing he asks is "how are you feeling and have you had any pains or discomforts since I last saw you?"He looks directly at DH. DH always says to whomever asks how is is doing or feeling "I feel fine, just great, I don't hurt anywhere."stock answer. I inserted he had foot pain and tried to discuss it when my DH tries to shut me up and the doc then says "I'll leave that to the specialist". On the visit a month ago, I was concerned because from 12 Sept to less than a full month after 3 earlier visits DH was down 7 lbs. on Sept 12 he saw the pulmonologist and the cardiologist and on both scales he was 188. Then 2 weeks later he was at the cardiologist for pro time and was 186. Then about 10 days or so, at the PCP, he was 181. I was concerned about this as he is diabetic and eating is getting to be a problem at times... Guess what I was told..not to get worked up about his wt loss. Wants him to lose about 5 to 7 more lbs and if he isn't hungry don't push eating...dial back insulin..( he is not on the sliding scale) or talk to the diabetic doc. When he said this I said to him "you realize there is something else at work here...ALZ" I am asked what is ALZ and I said Alzheimers... Even my brother in law who has had to take him before when I was away said he noted yesterday the way I was just sort of waved off. I am thinking maybe I should ask the neurologist for some recommendations for doctors who are PCPs in our area that he might know of who may be more informed about AD. Have any of you on the threads had this experience and how did you resolve it? It is bad enough to deal with this every day day in and day out and then feel you don't have a PCP who understands what is going on with this patient.
At every single conference I have attended, the war cry from caregivers, experts in Alzheimer's Disease, and neurologists, has been that PCP's need to be educated about Alzheimer's Disease. Sooooo many of them dismiss it as normal aging and truly know little to nothing about it.
On the other hand, there are some excellent PCP's - like the one I had when I lived in Massachusets. He was the ONLY doctor, and I do mean the ONLY one, including a neurologist, who said Alzheimer's from Day One. Even after the neurologist (the one the PCP sent us to for testing) dismissed my concerns, the PCP still said Alzheimer's. The neuro said he saw no sign of dementia, even after Sid scored in the 1%tile on comprehensive memory tests. ??????????????? We then moved to Florida, where we got the proper diagnosis. The PCP we have now is very understanding, and is really more concerned about me and how I'm holding up than Sid. He knows there is nothing that can be done for Sid. He pretty much takes notes on all of the specialists Sid sees, and refills his blood pressure medications. He has even agreed to handle the scripts for Aricept, Namenda, and Celexa, so I don't have to bother with the neuro for those anymore.
My suggestion would be to do some investigating and try to find a PCP who is more understanding and knowledgeable about AD.
We have a local neuro who sees my husband more often than the PCP and is more understanding. But I like our PCP because he deals with other health issues and tries to avoid more specialists. The Movement Disorder Specialist said my husband should see a cardiologist and the PCP said that wasn't necessary. My husband tends to passivity and doesn't argue with me when I speak up, but the doctor does seem to listen to me.
Do you see this PCP too? Has your husband seen this doctor for a long time? If there is reason to stay with him you might try writing him a letter and see if you can get him to change modes. But if there isn't reason to stay with him you can probably do a lot better.
My husband has Lewy Body Dementia, which means problems with certain medications, so I have started listing on forms that my husband is allergic to typical antipsychotics. We had a very good experience in the emergency room a couple of weeks ago (he had fallen and we were afraid he might have fractured his jaw), and I wonder if listing that allergy made them more concerned to treat him respectfully and let me be involved (I was with the technician during the xray).
My wife was going to a PCP who dealt with her diabetes and hypertension, but would not discuss the AD. When I kept mentioning AD she referred us to a specialist. Now we were going to 2 doctors, each a 1/2 hour drive away. At that point I switched her to a PCP only 5 minutes away who is very good with AD patients. At each visit she talks first to my wife, then asks if it is OK with my wife if she talks to me. She pays close attention to my comments. I am not taking my wife to any other doctors.
I do not see the same primary doc as he does. I am doctor shopping for myself now as I am due to go on to medicare (ugh) next month and cannot be seen any longer at the Military Treatment Facility as we live more than 30 minutes away and they recently started farming us out and besides as good as they are they only have enough docs to take care of active duty now. I am looking for a doc that does not ask questions that I consider none of their business like "do you wear seat belts" and do you own guns" ..what is next, what's next,,what kind of carving knife to I use for the turkey??? I have a couple of recommendations so am going in to see if they take new patients and if they are skilled in understanding Alz..for my benefit for support. And maybe I would have DH go to the same one. I would have to see about that. I intend to go out tomorrow and check a couple of others. As kind hearted as DH's doc is for him, I think if DH had no complications caused by Alz his present doc would be fine. It isn't necessarily personal as it is that I feel he does not have a good grip on ALZ.
DH was being treated by a hematologist for several years because of a severe bout of anemia. His hemaglobin count wasn't great but acceptable. DH refused to take iron supplements after 6 months because of side effects. Specialist started talking about all sorts of test including bone marrow test under anesthetic and that is when I stepped in and asked the PCP if he would monitor DH"s anemia. He said yes so now we have discontinued the hematologist. Once a year dh sees cardiologist and has his defibrillator checked. This year batteries have to be replaced. Under anesthesia, of course. I don't like it but I am afraid it will be necessary. Defib has never gone off in 7 years so I always questioned the necessity of the implant but that is a chance dh couldn't take. Until now dh has not been seen by a neurologist. If PCP can handle the necessary meds in the future, we will stay with PCP. Too many doctors just wear everyone out and sometimes don't serve a real purpose. DH gets confused easily enough.