My lo has Early Onset and is 58. Judy has deteriorated quickly. She has no concept of place anymore, not sure who people are (except me and the nurse at daycare) but she feeds herself and is still continent. Her Daycare insisted she go on medication (Risperidone) 2 weeks ago for her agitation, constant verbalizations and pacing. Two weeks later she can't hold her head up and is unable to balance her body. She has hit her head, bumped her head and fallen down. One day she can pace around the house and the next day can't stand up straight or walk without help. We've been to her GP and Neurologist in the last 2 weeks. They saw her bent over and gave me no advice. Now she can't walk by herself safely. I don't know what to do? Is this part of the disease or could this be a reaction to the medication? Deane
Hi Diatron, A very similiar story to mine. My DH is 55 and deteriorated really quickly as well. Was living in an ALF, then needed a higher level of care and has been in a nursing home since May 2011. Anyways, he was started on Risperidone...and the EXACT same thing happened. He can not hold his head up at all. To look at him in the face you have to get down on the floor and look up. The Dr. said it was a side effect of the Risperidone...he now goes to PT to try and help...but not much has changed. UGH...
hi Diatron. welcome i see you are new. if your Dear wife *DW. was ok 2 wks ago and after starting the new med has these symptoms its a very good chance its the med. ask for another type of med and see if she can tolerate another better. there are several good choices out there that accomplish the same results, but each patient is different and some dont tolerate one but can another. its a constant battle to find the right combos. my DH was the same only after a few mgs of haldol. these meds are quite powerful and our AD spouses are very susceptible body wise, and its my opinion with the diminished brain functions the meds hit them harder than normal. if it were me, i would definately work on getting her off this and try another. it goes to say if your neurologist hears of these symptoms after starting a new med, they SHOULD offer help! at minimum you can try a lower dose to see if things are better. ps, i might add if my neuro saw the side effects in person and did nothing after starting anew med, it wouldnt be just the med i was changing. :( divvi
Diatron and Brady-PLEASE speak with your LO's doctors and have them change the meds because this is not normal. As divvi said there are other meds out there which can help with the symptoms but not create the symptoms you describe. In our case, DH was prescribed 0.5mg of Risperdal to control his aggression and pacing. Well after the very first dose, he was almost catatonic-couldn't walk without assistance, had tremors in hands/legs, was totally disoriented and didn't know me. All new symptoms after the first dose. I insisted the dr take him off of the Risperdal immediately and they did. He immediately recovered back to his former self but still needed meds for aggression and pacing. Seroquel worked for us.
Diatron, I am so sorry that she is having such drastic reactions to the meds. I think that I would have to discontinue the meds until the doctor could see her. If she is just taking them for the daycare, then they would have to get over it. Sorry this is an entirely unmedical opinion but it seems to much of a coincidence that she started downhill as soon as she had a few doses of the new med? hope you get some peace and she gets relief from the side effects. welcome to our lifeline!!!!!!!!!!!!!
I would request discontinuing Resperdone immediately. Hb was put on resperdone for walking, awake all the time, etc. like others. Symptoms became the same: couldn't balance himself well for walking, couldn't hold head up to swallow, head on chest all the time, drooling. I asked that dosage be lowered or stopped. 2/27 he was admitted to ER unresponsive. All meds stopped. at 6:30 p.m. he was sitting up eating soup and pudding w/aid of aide. Spent 5 days in hospital on IV and antibiotics. Now back at care center walking, but shaky. Holds head up, eats, smiles, a few words of speech. I'm confident the resperdone caused his severe problems and don't want him to take it again. He's off of all meds now until 3/15. I'm hopeful his system will be cleared, and he'll be back to "normal" for him. If he were a danger to self or others, I might reconsider, but to make it easier for staff to care for him: no. It's their job.
I called her doctor at Johns Hopkins and left a message for him to call me. I had spoken to someone in the Psych Dept. at JH many weeks ago about an investigational study for a medication for agitation. She told me I could call her any time as a resource, so I did. She definitely thinks it's the medication and.....she emailed my doctor who called me within 10 minutes. Wow. Sometimes it is who you know. He told me to take her off it but let the Daycare give her the .5 mg today to see if she could tolerate 1 dose a day and improve. She is already so much better. Her head is up higher and she's not as stooped over. I will let them give her one dose again tomorrow so we can get through Friday and then I will stop the medication totally this weekend. Hopefully, I'll see even more improvement and can then deal with the Daycare. I wish they would just get over it at Daycare but it's the only Daycare near our home and they said that she might have to be removed from the Daycare because she was disruptive. (Just pacing and verbalizing and calling for me loudly and constantly, nothing physical or aggresive or dangerous.)And, my "resource" told me that I can come see the head of their department and discuss medication with him. Thank you for sharing and your support. I needed to hear that.
Diatron, so glad to hear she is being taken off the medication. Nice to have a prominent doctor on your side! If it were me, I would still have to change doctors. I can’t get over the fact that they saw her and thought her decline an acceptable side effect of the medication.
Is this a dementia day care? I only ask because your wife’s behaviors don’t seem so bad to me. In fact they are pretty ’normal’ for dementia. One would think they would be equipped to handle these behaviors without medicating her.
We had one day care in our area and they flat out refused to take Lynn. However, he was aggressive, so I could understand their stance. It makes the journey all the harder when you can’t take advantage of the help available.
You are learning what we have all come to know. We know our spouses better than any doctor. If something seems wrong, trust your instinct. Doctor are only ‘practicing’ medicine, they don’t have all the answers, question them often.
Again, so glad you stood your ground and got your wife off that medicine. Wishing you luck in finding the cocktail of medications that work for her.
well halllujah Diatron. shes already better. very good! like nikki says if you see something out of the ordinary report it to the dr. and again, i find it a bit odd that your dr didnt act on his own observations of the side effects produced by the med. he should have done this that same day. i think many drs have no real knowledge when it comes to dementia and the meds we are using. and i got the same treatment from a neurologist once that told me there isnt much to do but wait for the inevitable. while yes thats true we can try to strive to make what time they have bearable and a best quality of life. uh needless to say i had a new dr that day. the new one- yes he knew the same results but wasnt blatant about it, but we worked together to get meds ironed out AND he was there for whatever i needed as well as DH. its imperative you have a dr that will work with you. maybe a very low dose of ativan or seroquel may be a good alternative as many have good results with these. but i am not a dr just stating what others say here. i use ativan as well as needed.
The saddest thing is that this is our 3rd neurologist. The first one refused to fill out paperwork so I had to go to the Board of Physicians to get the paperwork needed to apply for SSDI (and he ended up suspending his practice for a year), the 2nd one couldn't talk loud enough for Judy to hear him much less understand him and then subsequently sent us to see the PA after the first visit. Our GP (who is great but is a family doctor) told us to go to a neurologist at the Alzheimer's and Memory Department of Johns Hopkins. How much better can I get? And, that is the neurologist who insisted it was okay for this to happen!!! Now I have to decide whether to try a local doctor (JH is about 1 hr 1/2 away) or just tell them at JH that I want to see another neurologist. Just another problem to solve.
You are absolutely right about the Daycare. It is for Moderate to Severely disabled people (not just Dementia). Their dementia patients seem to be in the late stages, unable to speak, quietly sitting with their heads slumped over. Judy, however, is right on target for her stage of dementia (around Stage 6 C-D) with incontinence starting (and sometimes unable to find the toilet int he bathroom). Agitation is common and she wasn't hurting herself or others. I know the behavior was just annoying to the Activities director and the aides. But, I couldn't argue that her agitation, wanting to undo her seatbelt, and yelling for me miles from home could cause distraction for the driver. That is the only reason I agreed to medication at all, so she could use their transportation. While working on this problem, I drove her 15 miles to and 15 miles from Daycare which, of course interrupted what I need to do during the day. Life was difficult but under control until the Daycare problem. It is a relatively small Daycare and I am angry that the aides don't know enough about Alzheimer's that they would find this a problem. Judy is very attached to the Nurse. She loves her and sometimes calls for her when she's at home. This is my only option for Daycare and is convenient and affordable. I'm hoping that they will see that her "normal" agitation is better than being so weak and bent over that she could have a serious accident while there.
I just contacted the doctor again. I used his personal email which I had only because of a cc sent about the psych study. He called me back immediately. I told him that he left me confused, and uncertain and didn't give me any options for now. I even challenged him about saying the anti-anxiety medications have dangerous side effects when the Risperidone had dangerous side effects like almost poking her eye out on the car door and falling while walking to pee "near" the toilet! (a little humor) Would you believe he said that giving those medications is best left to the Psych department and that is why he referred me to them. A Neurologist at Johns Hopkins Alzheimer's and Memory Department who has to refer a patient to the Psych Department for medication. I am in shock with disbelief. Is that insane? I asked him what this Seroquel was that other people are talking about. So, he said that he could give me that to try. I actually had to ask him about it! So, he's calling it in now. I guess I'll be spending Monday looking for a new Neurologist and I won't travel that far again to get to "the best".
sounds like this one is not one of 'the best'. for interim period , me, i would ask for another neurologist from that JH dept. they cant all be that assine:) they have a great reputation to uphold. the dosing on seroquel can be touchy, and sometimes it has to be given for a couple of weeks to kick in, so if you see more side effects call back to the dr /psych dept/and discuss maybe dosings-- again i am no dr but we have lots here who have to start with small doses then add accordingly. lower doses of the same meds can be tolerated til they build up resistances, and they DO build up to the doses so constant supervising with the drs is necessary when behaviors become altered again. maybe getting with the psych dept and on a one on one with a dr there will have more benefit too incase dosings need to be modified. sounds like the neuro is just the intermediary and charging. i hope you have good results and your DW can attend daycare without issues. best of luck divvi
Unfortunately, it has been my experience that the neurologists are best suited for diagnosing dementia and, sometimes, not very good at that. The best help for med issues, for me, have been psychiatrists. They have been more informed of options, drug interactions, dosages and balancing behavior meds w/other meds that are being taken. You may want to ask your family physician or local ALZ chapter to recommend a local psychiatrist that is familiar w/treating alzheimer patients.
Diatron, my DH refused to go back to his neurologist after 3 years of follow up visits, so my PCP said that he would prescribe any meds that he needs (he is on Aricept & Namenda). When he became aggressive about a year ago I was at my wits end & didn’t know what to do so I consulted the very knowledgeable people here & Seroquel was what the majority said I should try. I called our PCP & asked him if he would prescribe some for my DH & he told me that he would consult with his partner to decide what dose to give. He prescribed 25mg at night (which is a pretty low dose) & (praise the Lord) it worked. Now over a year later he is still taking that dose & he is pretty much holding steady. Now like everyone here has told you, it is pretty much a guessing game when it come to the (psych) meds, but for us the experienced friends here were spot on! It’s sad that you are having such a bad experience at JH. You would think that such a prestigious institution would have physicians who know what they are doing. (do you live in Maryland?)
Diatron, good for you!! I am relieved to hear you will be getting another doctor. I would rather have a doctor with a little heart and some common sense than a book smart doctor with a God complex!
Having said that, I wouldn't take offense at him referring you to a Neuropsych doctor. I think that is standard practice. It has been the case with all of Lynn's doctors. In truth, I really like the psyche doctor much better, they seem to not only get it, but have a lot more compassion. His goal has always been about helping Lynn find comfort and peace on the minimum medications.
As for driving that far, that is your call. I personally drive 2 hours each way to see my Neuro, but he IS worth it. We have a bond and I have been seeing him since 1999. Truth is if he moved to another state, I would still travel to see him.
Now Lynn’s VA Neuro was awful! He may have been the best they had to offer, but he had the personality of a stale lima bean!! It got so bad that my Neuro saw Lynn for free just so he could get quality care.
After diagnoses and dealing with the disease for awhile, I know many people forgo the Neuro altogether and just have their spouses meds adjusted by their PCP. Where you really like your doctor, maybe that would be an option?
I realize now that it's not uncommon to see a psychiatrist for medication management. I have the option of seeing the head of the psych department at Johns Hopkins and I did some research as Tom suggested and have the names of two others that are a little closer to home. I'm going to make an appointment next week with one of them and in the mean time I'm going to try the low dose of Seroquel. We were doing fine until a few weeks ago. I guess this is the nature of the disease and maybe I will adjust to the unexpected changes that are happening more frequently. I live close to Southern Maryland and drive long distances to see most of our doctors so I don't have a problem as long as it is worth it. I appreciate all of your suggestions and support. Your stories help me realize I'm not alone with this newest stage of the disease.
I think the issue is drug related. The problem is they are trying to hit a moving target. The decline , which is the normal progression of the disease, makes it difficult to come up with the right mix. Seroquel is very expensive and they do not want to use it unless that is the only thing left. The issue is their safety, you do not want them falling and adding more issues to what is going on. I have seen the light at the end of the tunnel and it is a train.
My husband receives all his prescriptions for his FTD from a geriatric psychiatrist. I have found, with my husband at least, that she is the most informed on the drugs for handling his behaviors. Respiradone was not my husband's friend. It caused him to be way more anxious. Seroquel has helped him along with lorazapam when needed.
I think if we were to take a poll we would find that almost everyone here had to learn by trial and error which doctor was best in our own situation, which meds work best, and gradually learn that WE are the best at analyzing what is happening and when a med change is needed. And we all stand behind one another in our experiments!
Diatron--I'm sorry to read of the difficulties you had with Johns Hopkins. My husband was a patient at the Alzheimer's and Memory Treatment Center at Bayview for about 6 years and he received wonderful care. BTW, Steve also has EOAD and was hospitalized twice last year at Bayview's Geriatric Psych Unit for medication adjustments. The second time, when he was put on the anti psychotic Zyprexa, he immediately started leaning towards one side. The docs recognized that it was either dystonia or torticollis--they said they'd never seen it in an AD patient before and that it was a reaction to the med. Usually, it happens in young schizophrenics. They kept him on the Zyprexa and added another med (Benztropine) which corrected the problem, all is fine now. It looks like some of these anti psychotics can have different effects on those with EOAD. I really feel for you because it's hard enough to deal with EOAD, but then add in behavior problems plus a physical ailment caused by meds and it's almost too much to bear.
I also have a lot of experience with daycare, and unfortunately, the transportation is a problem for many participants. I ultimately ended up driving my husband to daycare and picking him up--less convenient for me, but it eliminated some major issues.
Today was difficult. We started by going to breakfast at McDonald's...not so relaxing since I had to cut up everything and put the fork into the food for most bites. The problem isn't coordination or inability to use a fork, it's the vision problem of processing what she sees. As she withdrew from the Risperidone, the day continued with constant pacing and verbalizing and calling my name and the Daycare nurse's name for hours. She also said she had to go "potty" often but had the "death grip" on the clothing for at least 4 times before she finally went. MarilyninMD, Just as I'm understanding more about the role of the psychiatrist with these medications, the Psychiatry Dept. at Johns Hopkins Bayview called (yes, on a Sunday) and they couldn't understand why she was referred to them. They actually asked me why the neurologist didn't consult with others in his department. She did not feel that her department was the best place to treat an EOAD patient that was not aggressive or belligerent and was going to contact the neurologist to discuss this. I'm really confused but I have the Seroquel ready and I'm contacting her Family doctor whom I really trust and I have some names of other doctors. So, I'll go from there and hope that I can find some resolution.
Welcome to my website - please see the new thread I started - Joan's Welcome to new members.
It's just my own opinion based upon my own miserable experience with a memory disorder psychiatrist, but taking a dementia patient to a psychiatrist is worthless except for medications. Our neurologist is a specialist in memory disorders and the top doc in Southern Florida. But when his patients need medication to calm rages (as my husband did a few years ago), agitation, and out of control behavior, he refers them to the psychiatrist down the hall. I wrote quite a few blogs in 2008 about that nightmare. The psychiatrist acted like there was nothing wrong with my husband. Long story, and it's almost midnight, so I'm too tired to go into it now, but I finally convinced the neurologist to take over the psych. meds, and now we get them from him.
Diatron, I know nothing about John’s Hopkins but I wonder if your doctor made the referral to the wrong department? When admitted to the nursing home Lynn saw a Geriatric Neuro-psychiatrist. It wasn’t anything like going to a regular psychiatrist, there was no 'problem solving', it was all about trying to make him as comfortable and content as possible.
I went to John’s Hopkins website, and it appears the person who called you, doesn’t know what they claim to offer…. From that site… http://www.hopkinsmedicine.org/psychiatry/specialty_areas/neuropsychiatry/
Neuropsychiatry Program
Division of Geriatric Psychiatry and Neuropsychiatry Director: Constantine Lyketsos, M.D., M.P.H.
Neuropsychiatry encompasses diseases of the brain such as stroke, Alzheimer's disease, and multiple sclerosis that have accompanying disorders of mood, behavior or thought content….(etc etc)
Clearly, they do treat Alzheimer’s patients. I would call back either your doctor, or the director listed above. I think it is also a great idea to call your PCP that you trust… that to me is vital. Best of luck!
Diatron, Hopkins is a huge, complicated organization. I'm not surprised you're confused. There are people in different departments and different locations, all doing research and treatment related to AD and other dementias.
If you Google "Memory and Alzheimer's Treatment Center Johns Hopkins" you'll get the webpage of the clinic where my husband was treated. Dr. Lyketsos, who is mentioned in Nikki's post above, is the Director of the Center. I know him personally--he cares about the patients--and I think you should call the Center and talk with him.
I'm not sure about the Psychiatry Department at Bayview--my husband had NO talk therapy. His care was directed by a neuropsychiatrist specializing in AD and other dementia-causing diseases. I think the Center is the correct place for your wife to be treated, but it sounds like that particular doctor dropped the ball. I am sure Dr. Lyketsos would be responsive to your concerns and would want to know about your experience with his clinic. He may be willing to take your wife as his own patient. I would consider sticking with the Center because they are extremely knowledgeable about managing the psych meds and are very supportive of the caregivers. My husband was considered one of the more difficult patients in terms of behaviors and they were able to medicate him very successfully.