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Medical Forum / Diseases and Disorders / Alzheimer's / September 2004It's been a tough two weeks, but...long
Hello everyone, Please forgive me for not being more supportive to everyone here lately, but I'm working on a change for the better. This has been a rough two weeks. The loss of two freinds, Mother's dramatic and negative change. On Tuesday morning (after the phone call re: my second friend's death) I decided I couldn't take it anymore. That it was too much, why me, poor, pitiful me. I cried for hours, then I had an epiphany of sorts. I could cry myself into nervous collapse or mental breakdown, stress out until my blood pressure shot through the roof and I had a stroke, commit suicide, or I could brace up, pray and move forward. I chose the latter. During the course of the day, I began to feel more positive, calmer and I knew that I was going to be OK. I felt God's presence and knew I can get through this. I can get through anything. Not that I think it will be easy. Mother is totally irrational, crying, screaming, afraid...all the negative emotions and thoughts you could imagine. It's so sad, and I hurt for her so much. But, here's where my epiphany popped up...I can do very little to help her. I can visit, try to reassure her, love her; but I can't significantly help her other than to take care of her business and make decisions for her at the home. I love her, but I have to start distancing myself. That sounds selfish, but I know that you all understand what I mean. I just can't invest myself so physically and emotionally from now on. Of course, I'm not so foolish as to think that there won't be times when I will. I love her, she's my mom. But, she's not the mom I had a year ago, and as bad as that hurts, I've come to accept it. I don't like it, but I accept it. So, I go back tomorrow after not seeing her for ten days. I've talked with her by phone, and she still gets hysterical. I just have to learn to deal with it or walk out of her room and come back at a later time. It's a form of tough love I guess with a measure of self-preservation. I won't go every day, and I won't stay 5 or 6 hours when I do go. I finally realized that I have to go on with my life. Mom would want me to. She's going Monday morning for evaluation for ECT. I think that's it. It scared me at first because I immediately thought of the old movies depicting shock treatments. Several people have assured me that this is nothing like that, and that they have had success with it. They can't guarantee it with Mom, but they say it's worth a try since they've gone as far as they can go with medicines. The next step would be "chemical restraint" which I don't think I'd fight. She is in a constant state of agitation, hysteria, fear. I don't want her to suffer like that .I'd rather she sleep and rest. Tough decisions ahead, I know, but I feel I can handle it now by the grace of God. Perhaps it took my friends' deaths and this with Mother to bring me to the point where I can stand on my two feet and do what has to be done.Sorry to ramble on. Just wanted to let you know what's going on. I so much appreciate your being here for me and the concern you've shown. And, I am here for you. I love you all. Becky > Hello everyone, > [quoted text clipped - 40 lines] > > Becky Dear Becky, First of all a big hug to you (((((((((((( Becky )))))))))))). And a congratulations for crossing this hurdle in life. It's just that so many of them hit us at once, sometimes! They say it is the suffering in life that gives us wisdom. (Heaven knows we both ought to be very wise by now!) But life must go on and it is the ones who realize that, who manage to find the strength to cope. Becky, my mother in law got very agitated, and that is why our doctor gave her Risperdol. It was a godsend to us. She was calmer, able to stop freaking out about imaginary things, speak more clearly and deliberately, and live her life in more of an emotional comfort zone. As time went on and her disease got worse, we actually found it wiser to give her less medication. She apparently forgot the things she was having delusions about. Since there ARE so many meds out there, maybe it would be good to look into that option first? Somehow I still remember hearing so many bad things about ECT years ago. A medication can always be stopped, or the dosage changed. That is a big consideration.  SignatureRegards, Evelyn (to reply to me personally, remove 'sox") Hi Becky, I'm glad you had the epiphany! I am concerned about the ECT eval. Please, please go to the below link and subscribe and ask about it. I have NEVER heard of it being used for good with people with dementia but there are medical people on the list that will be able to better judge the situation. Look for Geri Hall's messages in response as she has much experience with AD and would best be able to advise you IMO. http://alzheimer.wustl.edu/adrc2/alzheimerlist/ SignatureMare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages > Hello everyone, > [quoted text clipped - 40 lines] > > Becky Thanks Mare for the link. I subscribed to the list and will definitely check out the ECT. It's set up for Monday, but I'll have to weekend to find out about it. Becky Hi Becky, I'm glad you asked and Geri answered. I learned something new today. Sounds like it is a viable "last" resort and it's great that she described the procedure and after effects. I just read the archives when I have time and subscribe when ever I have a problem I can't find an answer for. Geri has always given me right on advice. Good luck with your decision. SignatureMare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages > Thanks Mare for the link. I subscribed to the list and will definitely check > out the ECT. It's set up for Monday, but I'll have to weekend to find out about > it. > > Becky > Good luck with your decision. Thank Mare. I almost feel I have no choice. We went today for pre-op and were there four hours. Mother was tired and cold and wanted to leave. She started to cry, and I had a hard time calming her down. Then when we got back to the nursing home, I parked while the transporters took her in, and I could hear her when I walked in the door. She was approaching hysterics because she thought something had happened to me. If I slip up and say something about home, she seems angry. I had to trick her to get out today at 3. I gotta keep my visits to mornings. Anyway, we go back for the ECT Wednesday. I hope it's the right thing to do. I think the nurse practitioner, the psychiatrist and the doctor who'll do the procedure all have differing opinions. I am so tired. Tomorrow I'm staying home and resting. Thanks for steering me to the ALZ list. It's great! Becky > Anyway, we go back for the ECT Wednesday. I hope it's the right > thing to do. NO IT IS NOT!!! NOT!!! if she's having memory problems, it's the LAST thing she needs. did you get another expert opinion? who is this quack "psychiatrist"? ECT should be against the law. Dennis, What is the basis for your "conclusions" that ECT should be outlawed and the psychiatrist is a quack? Have you researched the subject on people with dementia? SignatureMare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages > > Anyway, we go back for the ECT Wednesday. I hope it's the right > > thing to do. [quoted text clipped - 4 lines] > > ECT should be against the law. > What is the basis for your "conclusions" that ECT should be > outlawed and the psychiatrist is a quack? Have you researched the > subject on people with dementia? I have a bipolar mother with severe memory loss resulting from ECT. And it didn't "cure" her bipolar condition. The results certainly don't justify its use. Apparently, my feelings about it are very similar to yours about administering psychiatric drugs, (which DO work, by the way), but it's obvious to me that you are more interested in personal attacks than in taking a cautious approach to such drastic "treatment" as frying a demented person's brain. You just earned your way back into my killfile. PLONK. >Subject: Re: It's been a tough two weeks, but...long >From: NO_SPAM_TO_dpharris@gci.net (Dennis P. Harris) [quoted text clipped - 9 lines] > >ECT should be against the law. People suffering from severe depression for whom drugs and talk therapy and every other means do not work, and who were successfully treated by ECT, would disagree. Someone close to me, and someone else close to a friend of mine, fall into this category. ECT saved their lives. Whether it's advisable for Alz. patients I have no idea. ___ Re-electing Dick Cheney puts me at risk for a migraine attack. > > Good luck with your decision. > [quoted text clipped - 12 lines] > > Becky Becky, Becky...... I feel quite sure you are making an absolutely awful mistake. PLEASE look into this further. There are medications that will calm her down, but I am sure that ECT for a person whose memory is already impaired will be disastrous. Get another opinion or three. Can't you hold off on this? SignatureRegards, Evelyn (to reply to me personally, remove 'sox") >Becky, Becky...... I feel quite sure you are making an absolutely awful >mistake. I've talked again with the nurse practioner and the dr who will do the ECT. He's a geriatric specialist who has performed this treatment on ALZ patients before. You guys have scared me silly. Now, I don't know what to do. I only want to help my mom. Becky > >Becky, Becky...... I feel quite sure you are making an absolutely awful > >mistake. [quoted text clipped - 5 lines] > > Becky Dear Becky, No one wants or means to scare you, BUT...... What harm is there in waiting a bit? What harm would there be in trying EVERYthing else first? You can still do it if there is no other help for your mom. I would get another opinion and do a lot of inquiry and research on this. We could ALL be wrong, but everything I have ever read claims that ECT is damaging to memory. If your mother really has Alzheimers it doesn't seem sensible to try a therapy that damages her brain even more. She needs every single brain cell that is still firing. Just because something is recommended by a doctor doesn't mean it is the right thing to do. Lots of people have had horrible injuries and even died at the hands of doctors who acted in perfectly good faith. I would switch doctors immediatly and hold off on that treatment. Why? Because you can't get back what she will lose after you have done it. Everyone who replied to you here would have known if it was an effective treatment. We have all been through this for several years with our various loved ones with this illness. We aren't a bunch of rookies who aren't familiar with everything that can be done for these folks. So many of us having alarms go off is reason enough to maybe rethink the plan. In everything I have read on alzheimers in the last couple of years, I have NEVER heard of ECT as an effective treatment, and there must be a reason for that. ESPECIALLY in the light of so many effective medications that could provide her some peace, I would think that shooting her poor brain full of electricity to shock her brain cells, should be the last resort. I have a relative who is the significant other, of a man who is a psychiatrist who is up to date on all the latest therapies and drugs. I will ask him what he thinks of it if you want. Let me know if you want me to ask him. At least you would know this is the opinion of a professional, a total stranger who doesn't have any vested interest in this treatment being done or not done. I think your doctor is going to get big bucks for doing something that is dubious in value at best, and maybe harmful at worst. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") >I have a relative who is the significant other, of a man who is a >psychiatrist who is up to date on all the latest therapies and drugs. I >will ask him what he thinks of it if you want. Let me know if you want me >to ask him. At least you would know this is the opinion of a professional, >a total stranger who doesn't have any vested interest in this treatment >being done or not done. Yes, please. But, you may not have time. We're supposed to go in the morning at 10:30. Oh, they're trying to treat the depression not the ALZ. Thanks, Becky > Yes, please. But, you may not have time. We're supposed to go in the morning at > 10:30. Oh, they're trying to treat the depression not the ALZ. all the MORE reason to get AT LEAST ONE MORE opinion, which, as I said, Medicare will pay for. A DELAY WILL COST NOTHING but it might save your Mom's memory if she has AD. > >I have a relative who is the significant other, of a man who is a > >psychiatrist who is up to date on all the latest therapies and drugs. I [quoted text clipped - 8 lines] > Thanks, > Becky Becky I wasn't able to reach the person last evening. It is 7:30 in the morning right now, so it is probably not going to help. If as you say, they are treating her depression this way, it still seems extreme. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") I did a lot of research about ECT back when I was working in the field of mental health ... never could come to an opinion .... certainly wouldn't support trying it unless every other option has been explored... but if the other options have been, and she is still in what sounds like so much agony, I wouldn't rule it out either. I talked to patients who had had ECT regularly .... or who were being evaluated for it.... there are some hospitals that use it all too often and too quickly... but others DO have processes that are followed to protect people. Is there not a psychiatric geriatric unit anywhere near you? Here, people who are in as much distress as your mom seems to be, are admitted for an assessment... often takes several weeks as an inpatient. I'm sorry we're adding to your stress... but it IS, as Evelyn said, a big - and irreversable - decision > >Becky, Becky...... I feel quite sure you are making an absolutely awful > >mistake. [quoted text clipped - 5 lines] > > Becky >Is there not a psychiatric geriatric unit anywhere near you? I think there is a unit in our local psychiatric hospital. The nurse practitioner thought it would be a good idea to send her there for medication evaluation and adjustment. The psychiatrist nixed it. Didn't think it would help and might be too traumatic for her to be in a strange place. Becky > >Is there not a psychiatric geriatric unit anywhere near you? > [quoted text clipped - 4 lines] > > Becky I would have thought that would be the best option of all. The fact is that there ARE very good drugs out there for this kind of thing. Not to have even tried them, seems like something is very wrong. That psychiatrist is not on the up and up..... sorry, but that is what I think. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") Evelyn, Have you read what has been tried. Perhaps you should. http://new-www.adrc.wustl.edu/archives/html/alzheimer/2004-08/msg01266.html and then read Geri's response http://new-www.adrc.wustl.edu/archives/html/alzheimer/2004-08/msg01270.html and notice the letters after her name and check the archives for more of her messages to see what she has done in her professional life. In fact why not read what others have to say. http://new-www.adrc.wustl.edu/archives/html/alzheimer/2004-08/index.html > > >Is there not a psychiatric geriatric unit anywhere near you? > > [quoted text clipped - 14 lines] > That psychiatrist is not on the up and up..... sorry, but that is what I > think. > Evelyn, > Have you read what has been tried. Perhaps you should. http://new-www.adrc.wustl.edu/archives/html/alzheimer/2004-08/msg01266.html Yes, and I read it the first time it was posted. There was a suggestion that the woman be stabilized with medication all over again and it was rejected by this same psychiatrist who is pushing the ECT. I quote: " The nurse practitioner thought it would be a good idea to send her there for medication evaluation and adjustment. The psychiatrist nixed it. Didn't think it would help and might be too traumatic for her to be in a strange place." Did you read that ALL drugs have now been stopped on Becky's mom as of this time? Of course she would be exhibiting worse symptoms now. > and then read Geri's response http://new-www.adrc.wustl.edu/archives/html/alzheimer/2004-08/msg01270.html > and notice the letters after her name and check the archives for > more of her messages to see what she has done in her professional > life. Yes, the woman has credentials. I am sure one could easily find professionals with just as many credentials who don't believe ECT is the best treatment for someone who has alzheimers. Professionals often disagree. I have no letters after my name, but I have been reading here for about four years now and a good many people have come through here, with the collective experiences of all their loved ones and all the medical professionals they have consulted. This is the first time I have seen ECT offered as a treatment for this kind of agitation. How could it hurt Becky or her mother to wait a few more weeks and try to have her mother re-assessed for medication adjustment? They can ALWAYS go to ECT if all else really does fail. Evelyn <snip> >http://new-www.adrc.wustl.edu/archives/html/alzheimer/2004-08/msg01270.html >> and notice the letters after her name and check the archives for [quoted text clipped - 11 lines] >have consulted. This is the first time I have seen ECT offered as a >treatment for this kind of agitation. It might be the first time you have seen it, but maybe there are some that just have not posted that this treatment was recommended also. I am one of those ... Dr. recommended ECT for my mothers agitation and depression. Medications had been tried and tried, nothing was appearing to help her. I refused anyway and decided to just ride the tidal wave, thought it was cruel to even put her through it. I just couldn't bring myself to do it. Now it seems so long ago (yet it was only about 6 months), and mom is very peaceful and calm (probably will change next week as the state is insisting the nursing home lower her meds to see if they are really necessary). She seems to have passed into yet another stage. As much as I hate to watch the progression of this disease, it is somewhat of a relief to see her happy once again. And I do feel very good for not putting her through the pain and trauma of the ECT. Joyce >How could it hurt Becky or her mother to wait a few more weeks and try to >have her mother re-assessed for medication adjustment? They can ALWAYS go >to ECT if all else really does fail. > >Evelyn > <snip> > [quoted text clipped - 13 lines] > >have consulted. This is the first time I have seen ECT offered as a > >treatment for this kind of agitation. Joyce said: > It might be the first time you have seen it, but maybe there are some that just > have not posted that this treatment was recommended also. I am one of those ... [quoted text clipped - 10 lines] > > Joyce Thanks for sharing your experience, Joyce. I stand corrected, I have now heard of TWO instances where ECT has been suggested. I hope someone who has actually allowed it to be done will come forward and let us know how it went, and how it affected their loved ones mental state. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") "Evelyn Ruut" <mama-lionsox@hvc.rr.com> wrote in message n > > <snip> > [quoted text clipped - 23 lines] > has actually allowed it to be done will come forward and let us know how it > went, and how it affected their loved ones mental state. OK, Evelyn now you've heard of three whose loved one recieved a recommendation for ECT. My mom (who had a long history of depression, finally dianosed as bi-polar--well, they called it manic depression back in the mid-70's) experienced fairly severe depression/psychosis and agitation at some point around the time she became mid to late stage 5. She had been medicated with various drugs in the earlier stages, her psychiatrist at the NH had been able to wean her off some of them when she first arrived, and she had done well for awhile. As the disease progressed further, the psychosis/depression reared it's head again, and it just didn't seem to help very much to increase some of the meds again. That's when the psych doc suggested the family consider ECT. We all discussed it, first horrified at the thought, then, after research, just a bit scared by the loss of memory.. we decided not to rule it out completely, just took a "wait and see" approach. My mom wasn't in quite as much psychic pain as it seems Becky's mom is, if she had been, we really might have considered going ahead. I'm wondering if we might not see more ECT recommendations for our LO's in the future, since we have seen so much more research out now, connecting depression as a risk factor in the development of AD. Just sharing another experience with ECT recommendations. Lynn >And I do feel very good for not putting her through the >pain and trauma of the ECT. Pain? The person close to me who had ECT had no pain. The person got an anesthetic. ___ Re-electing Dick Cheney puts me at risk for a migraine attack. >>And I do feel very good for not putting her through the >>pain and trauma of the ECT. > > Pain? The person close to me who had ECT had no pain. The person got an > anesthetic. Rose, it is well documented that alzheimer patients often go into a severe sudden decline if they are given general anesthesia, regardless of what it is for. Very often they never regain what they have lost as the result of being anesthetized. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") > ___ > Re-electing Dick Cheney puts me at risk for a migraine attack. >Subject: Re: It's been a tough two weeks, but...long >From: "Evelyn Ruut" mama-lionsox@hvc.rr.com [quoted text clipped - 11 lines] >is for. Very often they never regain what they have lost as the result of >being anesthetized. In other words there will be no anesthetic for this lady? This makes me wonder...what if it was discovered an AD patient had a malignant tumor or got into a car accident causing internal injuries? How would the anesthesia issue be handled? Is surgery generally avoided? ___ Re-electing Dick Cheney puts me at risk for a migraine attack. somewhat different if it's life threatening or causing great pain... but to treat behavioural issues? When there are medical alternatives that have NOT been explored? In this case, my understanding is that there is a geriatric physciatric unit which COULD be utilized to determine what the person needs that has NOT be accessed because the MD wanted to go right to ECT.... I don't have objections to ECT if/when everything else has been tried or at least CONSIDERED.... NOTHING that involves anaesthetic should be "tried" FIRST for someone who is known to have AD.... if it can be avoided, YOU AVOID IT... and if it involves DAMAGING brain cells, as ECT does, you use it ONLY once every other option has been explored > >Subject: Re: It's been a tough two weeks, but...long > >From: "Evelyn Ruut" mama-lionsox@hvc.rr.com [quoted text clipped - 20 lines] > ___ > Re-electing Dick Cheney puts me at risk for a migraine attack. >Subject: Re: It's been a tough two weeks, but...long >From: "Lee" sleeplessinwherever@hotmail.com >Date: 9/11/2004 9:55 AM Pacific Daylight Time >Message-id: <t6G0d.302466$UTP.82071@twister01.bloor.is.net.cable.rogers.com> >somewhat different if it's life threatening or causing great pain... but to >treat behavioural issues? I wasn't disputing Evelyn's point, which I tend to agree with. I was merely wondering, as a separate issue, how surgery and anesthesia are handled for people with AD. But now that I think of it, severe depression causes great pain and is life-threatening. But I would tend to think ECT should be the last resort for anyone although as I'm not a doctor I can't know for a fact what is right in every case. ___ Re-electing Dick Cheney puts me at risk for a migraine attack. > >Subject: Re: It's been a tough two weeks, but...long >>From: "Lee" sleeplessinwherever@hotmail.com [quoted text clipped - 17 lines] > in > every case. Rose, Nobody can know what is absolutely 100% guaranteed to work in every single case. We can only take in the information we do know has been evidenced in most other cases, factor it out for ourselves in relationship with our own situation and do the best we can with the knowledge we have at the time. Generally speaking it seems that ECT would be an absolute last ditch effort when NOTHING known to man or medicine worked otherwise. That seems to be the consensus around here and from others who have been familiar with the treatment in relation to alzheimers. Another consideration might be that the individual in question may have been a bit psychotic long before alzheimers entered the picture..... every situation is different. (my guesswork only) If you have read this thread from the beginning, you might know that there has been some controversy over ME in particular speaking my opinion here, (never mind that others also voiced the same opinion). This is not a new situation and has come up before. In replying to this thread at all I wonder if it is simply some of that same group of people trolling to re-awaken this issue, or if it is honestly and legitimately being discussed all over again. If you are legitimately just tuning in at this point, then please forgive me for even mentioning it, but by way of explanation, I do object strenously to the kind of selective chastisement that has been dished out to me by certain people and it tends to stifle conversation in general and make me mistrustful in particular of the appearance of dead threads being re-awakened with re-issued challenges, by new names which are not in my killfile. You would too. PS.... I agree with your signature line :-) SignatureRegards, Evelyn (to reply to me personally, remove 'sox") > ___ > Re-electing Dick Cheney puts me at risk for a migraine attack. Evelyn wrote: >If you are legitimately just tuning in at this point, then please forgive me >for even mentioning it, I'm late to the thread. I do not object to anything you've said. I would also tend to think ECT should be the last resort although again, I add the caveat that I'm not an expert on geriatric psychiatry so don't go by me. But it scares me when it's opined that ECT should be outlawed. (You didn't say it.) People have a right to that opinion but when I see that I always feel the need to give my relative and friend's side of the story. May I ask one more time how the issue of anesthesia for AD patients is handled for surgeries? Are surgeries generally avoided? I'm asking this not related to ECT but as a totally separate issue. ___ Re-electing Dick Cheney puts me at risk for a migraine attack. >how the issue of anesthesia for AD patients is handled for surgeries? Are surgeries generally avoided?< For what it's worth, today I saw an 89 year old woman with AD who'd had a hip pinning for a fracture and they had used a spinal. I couldn't judge whether she was any worse, because she's permanently disoriented and the hospital routine is a big stressor. She'd already removed the bandage and dug into the surgical site, so they had her hands in mitt restraints- and I was seeing her about 12 hours after surgery, to try and dangle her at the edge of the bed. Well, despite the fact that she insisted she needed to be "downtown" right away, she would not let me sit her up. But she talked a mile a minute and I was successful in getting her hip "ranged" (gentle movement) by distraction mostly (Yes, I have seen her at church and yes, committee meetings are too tiring, etc.) Although I didn't get her up walking (have yet to be able to do that with anyone before 2 days), I did tire her out just with the talking so her room-mate could have some rest. To answer your question Rose, it's a case by case decision. Sometimes, there's no choice. Sometimes there is. I saw that this particular lady had a pacemaker though, and it made me wonder how long she'd had it. If it had been needed after the onset of the dementia, makes you wonder why. Know nothing of family, docs, or even her prior quality of life-so obviously can't be judging. And then there was the 98 year old lady(non-AD) who'd had to have a bilateral thrombectomy (clot removal in the groin) and she was doing just great after a general anesthesia- and is on her way to Rehab. as I write. Beth Physical Therapist It is well established that a general anesthesia often causes an acute confusional state in a person with Alzheimer's disease or other dementia - and frequently, they don't recover the ground they have lost - it gets called POCD in journals of anesthesiology - post operative cognitive dysfunction. I've read lots of materials on the phenomenon, and they aren't really sure why it happens. Its so common, that for a while they actually thought that anesthesia might trigger Alzheimer's - but now they think it just exacerbates it so much it is suddenly visible to the family that something is cognitively awry (i.e. their symptoms pre-surgery were so mild that no one yet realized they had AD, but afterwards it becomes obvious). For many of us who have loved ones with AD, surgery then becomes a sticky issue. Obviously if there is something that has to be fixed or it will result in suffering (like a broken hip), there is less angst, but a lot of surgery in the elderly is either elective or of iffy benefits - particularly for someone who has a dementia. You have to do a risk vs benefit analysis, and its not always easy. For example, given that AD is fatal, and quality of life takes a nosedive as their cognitive abilities erode, is there a point in fixing anything via surgery that is not an immediate source of acute physical suffering if it might really impact their cognition...which it often does? Is there a point in anything elective, let alone cancer surgery or heart surgery when they are already dying from a progressive dementia and you may be trading a few more months of life, for a very much reduced quality of life due to cognitive decline. Non-surgical treatments, or palliative care alone starts to become much more appealing. Here are a couple of articles http://www.cja-jca.org/cgi/content/full/50/suppl_1/R12 http://www.alz-nca.org/caretips/anesthesia.asp http://www.ipa-online.org/ipaonlinev3/publications/archive/Volume%2009%20Number% 203%20-%20September%201997/IPA%20-%20Impact%20of%20Anesthesia.asp Mary G. After Grayson had been diagnosed with AD he got a card from the cardiologist that it was time for his annual chemical stress test. I mentioned it to our PCP and he advised to just let it go. He asked what would I do if they did find something wrong, pointing out the danger of anesthesia for him. So he did not go back to the cardiologist. The dentist also told me he had an abcessed tooth but that she would not advise doing anything about it unless it began to bother him; it never did. Gwen > It is well established that a general anesthesia often causes an acute > confusional state in a person with Alzheimer's disease or other [quoted text clipped - 32 lines] > http://www.cja-jca.org/cgi/content/full/50/suppl_1/R12 > http://www.alz-nca.org/caretips/anesthesia.asp http://www.ipa-online.org/ipaonlinev3/publications/archive/Volume%2009%20Number% 203%20-%20September%201997/IPA%20-%20Impact%20of%20Anesthesia.asp > Mary G. > I wasn't disputing Evelyn's point, which I tend to agree with. I was merely > wondering, as a separate issue, how surgery and anesthesia are handled for > people with AD. they are usually avoided unless they are really necessary. > >Subject: Re: It's been a tough two weeks, but...long > >From: "Evelyn Ruut" mama-lionsox@hvc.rr.com [quoted text clipped - 17 lines] > tumor or got into a car accident causing internal injuries? How would the > anesthesia issue be handled? Is surgery generally avoided? Depends...how malignant, how much pain, what is the trauma, and also how much do the people making the decision for surgery know or care about this. SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com I'm with you Evelyn - when it comes to the elderly, particularly those with dementia, cautious and conserative is usually much the best course of action. I can see trying ECT if everything else had been attempted and nothing was working - but I don't think this is the case - and I cannot understand how checking her in to a facility to tinker with meds is more upsetting and potentially traumatic and disorienting than skipping that very reasonable step and going straight to ECT. Since ECT is the measure of last resort - even in all the studies - you want to try the smaller hammers first, before you bring out the sledge. My father was a manic depressive, and he had ECT therapy, and he felt it had permanent impacts on his memory, and he was a big strapping physically healthy man in later middle age when he had it done, not an elderly, frail person with a progressive dementia. After all, essentially how it works is that it is a traumatic insult to the brain, and causes damage - and that aftermath of the brain injury alters brain chemistry - which can be a good thing if a person is at risk of suicide or just can't function at all and absolutely nothing else is working. However, better to try medications that might tip that balance first - particularly with a dementia where things change on the agitation front over time as the person enters new phases of the illness. I'm not against ECT as kneejerk thing - I'm just against calling it in before other things have been tried. Chemical warfare first, and the zapgun second. Mary G. > I'm with you Evelyn - when it comes to the elderly, particularly those > with dementia, cautious and conserative is usually much the best [quoted text clipped - 25 lines] > > Mary G. Thanks Mary. It seemed so obvious and sensible to me too, but apparently not to Mare. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") snip > Thanks Mary. > It seemed so obvious and sensible to me too, but apparently not to Mare. Nope it's not so obvious to me after doing a little digging into the circumstances and doing a little research. You should try it sometime. SignatureMare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages Mare, I don't think the sarcasm is called for. If it matters, I did read the materials and a lot more to boot, and still came to the conclusion I did. Mary G. Mary, I'm not sure which post you are replying to since you don't include any of it but I'll guess it's my response to Evelyn's snip > Thanks Mary. > It seemed so obvious and sensible to me too, but apparently not to Mare. >Nope it's not so obvious to me after doing a little digging into >the circumstances and doing a little research. You should try it >sometime. I guess you do think it's OK for someone to imply that I didn't come to the "obvious" and "sensible" conclusion because I held a different point of view. I don't have a problem with people reaching different conclusions, I do have a problem having my conclusion being dismissed and ridiculed. It might not be what Evelyn meant but that's the way I read it. I am really surprised that you decided to reprimand(or whatever you want to call it) me. I had really hoped that things here had changed in the past few years but I guess not. Below is a general "you all" not you specifically. Well I will not put up with the BS anymore, things haven't changed with the few old timers left. So go ahead and recommend administering drugs as a first line of dealing with problem behaviors in AD, jump on people that have differing views or ways of dealing with AD LO's and an open mind when it comes to unheard of treatment. It scares alot of people off when they are jumped on like I've seen over the years by a select few. Good Luck to everyone. SignatureMare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages > Mare, I don't think the sarcasm is called for. > > If it matters, I did read the materials and a lot more to boot, and > still came to the conclusion I did. > > Mary G. > Mary, > I'm not sure which post you are replying to since you don't [quoted text clipped - 38 lines] > > > > Mary G. Yes, it does seem the same old BS rears it's head once again on this NG--shame, since there are some wonderful people here, offering some good info in general..however, the tendency of some to take such a strong stance, sure they have all the answers is quite hard to deal with some times. Sorry to hear that you are leaving again, but understandable. Unfortunate for the group- you have contributed much over the years. I noticed one other of my favorite old-timers, Pam has disappeared also, as had Donna quite some time ago, for all the same reasons. Too sad, this group was once the best I'd seen. Thanks for the links to the other support group--it does seem to be a "safer" place, with some wonderful "experts" there as well. Please don't let the pettiness of some deprive the rest of the group of your long experience with AD and your mom. Warm regards from Lynn What I was reacting to was the "you should try it sometime" line - which WAS sarcastic - you got your back up and then lashed out. Its not like you were entirely sweet and got a tweak back out of the blue. Obviously there is a history here I'm a bit oblivious to, but hey, various people here and I have had our differences as well (including Evelyn), and I'm still standing. I think you've taken a few things too personally in this thread and read more into what was being said than was intended. I've yet to see a newsgroup yet where phrasing in a posting NEVER results in someone taking offence, and an outbreak of whacks upside the head - sometimes deserved, sometimes not. Personally, I think the value of contributing here is worth the odd fit of pique. Debate is healthy. Oh for a world where doctors actually practice evidence based medicine, since then we'd have a lot less to argue about since when they gave us advice, we'd at least be sure they had solid scientific reasons for their recommendations. Mary G. > What I was reacting to was the "you should try it sometime" line - > which WAS sarcastic - you got your back up and then lashed out. Its [quoted text clipped - 18 lines] > > Mary G. Mary, if we ever did come to any disagreement, I am sure my admiration for you and your clear minded good sense overcame it. Your advice here has always been absolutely the best and I respect your opinions 100%. I have told you that before, too. If all Mare's pals left because of me (as her pal Lynn asserts), I wonder at their thin skinned approach to life. The real world is a lot tougher than usenet. What power they ascribe to me! Like you I agree that discussion is healthy. There is no law that everyone must agree with everyone else on usenet or anywhere else. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") > > Evelyn, > > Have you read what has been tried. Perhaps you should. http://new-www.adrc.wustl.edu/archives/html/alzheimer/2004-08/msg01266.html > Yes, and I read it the first time it was posted. Well that's funny because this is the first time I posted this link. The list of meds tried seems pretty complete with a few thrown in that I don't know. It has been months(almost a year) that Becky's Mom has been suffering while these drugs were tried. None of them apparently have worked. Seems to me the lady has been severely suffering. > There was a suggestion that the woman be stabilized with medication all over > again and it was rejected by this same psychiatrist who is pushing the ECT. [quoted text clipped - 5 lines] > evaluation and adjustment. The psychiatrist nixed it. Didn't think it would > help and might be too traumatic for her to be in a strange place." So she should continue to suffer while all the same drugs that didn't work the first time were tried again? And of course that would take months since they all need time to kick in and then titrate down before trying the next set of meds. Yes they might work this time but it is not only Becky's Mom who is suffering. Poor Becky is suffering right along side her Mom and putting her health at risk as well. I know your first response to problems is drugs but some of us think other things can be used first or in this case as a last resort. I'm amazed that people think putting chemicals into someone's body is somehow safer then something they know nothing about. > Did you read that ALL drugs have now been stopped on Becky's mom as of this > time? Of course she would be exhibiting worse symptoms now. From what I've read the symptoms are the same as when she was trying different meds. Every thing I've ever learned was that you titrate down meds before trying something else to make sure you know what the resulting behaviors are from. So if the plan is ECT make sense to me. > > and then read Geri's response http://new-www.adrc.wustl.edu/archives/html/alzheimer/2004-08/msg01270.html > > and notice the letters after her name and check the archives for > > more of her messages to see what she has done in her professional [quoted text clipped - 10 lines] > have consulted. This is the first time I have seen ECT offered as a > treatment for this kind of agitation. You have 4 years here and I have 7 or 8, Geri has credentials and at least 20 years experience with HUNDREDS of people with AD. I think the reason that both of us had never heard of this was because it is a LAST resort. I did do some research on ECT with AD and the problem doesn't seem to be with the ECT itself but with the general anesthesia administered. That might be where the debate among professionals comes up. It is actually used to treat psychosis associated with depression, not because of agitation associated with AD. The AD with the use of the anesthesia is the problem. I have also been reading the AD list for the same amount of time I've been reading/posting here and I've never seen Geri give bad advice and I value her expertise. > How could it hurt Becky or her mother to wait a few more weeks and try to > have her mother re-assessed for medication adjustment? They can ALWAYS go > to ECT if all else really does fail. I don't think it would only be a few more weeks to clean Becky's Moms system of all the meds that have been tried and then it would take months to retry all the meds that have already been tried. Meanwhile Becky and her Mom are still suffering and Becky is making herself sick with deciding all over again. In an ideal world retrying meds might be fine but Geri's post said just last week she "lost" a client who was also trying different meds to reduce the agitation/psychosis associated with depression. Geri wondered if the meds contributed to her passing and maybe ECT should have been tried sooner. Like I said in a previous post Becky is between a rock and a hard place and what ever her decision I'll support her because only she knows what is best. Mare, Yes, Ida DID get a diabetic reading once, but only very late on, and now she has NO diabetes according to several tests done in the nursing home and is not on any meds for it. Risperdol gave her such relief from her scary and upsetting delusions, that we would STILL make the decision again to allow her to continue it. Her doctor made that decision and we went with it. As time went on the Risperdol was needed less and less. I saw the research you posted about the Risperdol and we factored it out with her doctor and he felt it wasn't enough reason to discontinue it. I saw the article you posted the link for, when it was ACTUALLY posted here to this group the first time. Whatever Becky decided, I will support her too, because I really believe she was trying to help her mother. JUST like we were helping Ida by allowing her to take Risperdol, (which was recommended and prescribed by her doctor). The rest of your post seems just a bit argumentative, and I chose not to address it line by line, so excuse the top posting. Considering the fact that quite a few people spoke exactly as I did, but you chose to attack ME ALONE over my comments, is revealing. It was the same thing you did a couple of years ago. Odd that you could take such an attitude with me when you don't even know me, or probably, anyone else who posts here on a personal enough level to blast them like that. In the interest of peace, I would suggest that you put me in your blocked senders list. I cannot imagine why you bother reading someone you dislike. I for one, don't need your aggravation, as I have enough to cope with in my life, so I will refrain from reading yours. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") > > > > Evelyn, > > > Have you read what has been tried. Perhaps you should. http://new-www.adrc.wustl.edu/archives/html/alzheimer/2004-08/msg01266.html > > Yes, and I read it the first time it was posted. > [quoted text clipped - 43 lines] > > > > and then read Geri's response http://new-www.adrc.wustl.edu/archives/html/alzheimer/2004-08/msg01270.html > > > and notice the letters after her name and check the archives > for [quoted text clipped - 51 lines] > Becky is between a rock and a hard place and what ever her > decision I'll support her because only she knows what is best. Oh Evelyn, Just for a second today when I was explaining where I was coming from regarding ECT I wondered if we would revert and you would twist things around. I should have known better. sigh > Mare, > [quoted text clipped - 9 lines] > I saw the research you posted about the Risperdol and we factored it out > with her doctor and he felt it wasn't enough reason to discontinue it. I misunderstood. Last time I saw you post about Ida and diabetes it sounded like she had been diagnosed with it. The only reason I mentioned the risperdol was to say that only the caregiver can make the final decision. I wasn't trying to say you did wrong. > I saw the article you posted the link for, when it was ACTUALLY posted here > to this group the first time. Well I just went back over my posts and actually pasted the links in different lines since maybe I did by mistake post the same ones. None of them were the same, maybe you read the archives or get the list. I don't know but it doesn't really matter. > Whatever Becky decided, I will support her too, because I really believe she > was trying to help her mother. JUST like we were helping Ida by allowing > her to take Risperdol, (which was recommended and prescribed by her doctor). OK, your responses didn't seem that way. Like I said the risperdol was just a comparison. > The rest of your post seems just a bit argumentative, and I chose not to > address it line by line, so excuse the top posting. Sigh I was just trying to explain where I was coming from and maybe things you didn't know. > Considering the fact that quite a few people spoke exactly as I did, but you > chose to attack ME ALONE over my comments, is revealing. It was the same > thing you did a couple of years ago. Umm I did ask Dennis how he got to his conclusions. You were the one that made several posts about Becky making the wrong decision. I just wanted to address why I thought there was another way to think about it. > Odd that you could take such an attitude with me when you don't even know > me, or probably, anyone else who posts here on a personal enough level to > blast them like that. Whoa, I'm not blasting I'm explaining my take. Funny that you don't seem to notice your snipes at me about "obvious" conclusions you've drawn that I don't agree with or Becky not listening to you because she hasn't said whether she will check with another Dr. > In the interest of peace, I would suggest that you put me in your blocked > senders list. I cannot imagine why you bother reading someone you dislike. No thanks. Evelyn there is a difference between disagreeing and disliking. I think you are projecting on me because you hate it when I disagree with you. Who knows in a few years you might be relaying this info just like you now relay the loving deception info you fought against so much just a few short years ago. > I for one, don't need your aggravation, as I have enough to cope with in my > life, so I will refrain from reading yours. OK Mare Mare, OK so I will try again. If I have mistaken your intent, I apologize. I do think you may have mistaken mine. My only intent for posting here is to help others at this point. I am not very good at doing internet searches etc. so I leave that to others. I seldom take such a strong stand on anything, but this did seem like a situation that called for it. I do know that ECT has been associated with memory loss, and general anesthesia has almost always been associated with a decline in alzheimer patients. Between the two it seems like a very drastic solution to depression and agitation. But it wasn't my decision to make. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") > Oh Evelyn, > Just for a second today when I was explaining where I was coming [quoted text clipped - 96 lines] > > Mare Evelyn, > Mare, > [quoted text clipped - 4 lines] > point. I am not very good at doing internet searches etc. so I leave that > to others. My only intent also is to help others going down this dang road. I do like learning things as I go along too and when I do research I post the links so others can share the knowledge. I wish I had known this stuff when Donna posted a few years ago about her mother's problems, it might have been an option for her to explore. > I seldom take such a strong stand on anything, but this did seem like a > situation that called for it. Yup that's what I thought too. > I do know that ECT has been associated with memory loss, and general > anesthesia has almost always been associated with a decline in alzheimer > patients. Between the two it seems like a very drastic solution to > depression and agitation. Yup it is a drastic step, last resort. I hope I never have to make this type of decision. > But it wasn't my decision to make. Mine neither. I hope Becky and her Mom are doing OK. SignatureMare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages > Evelyn, > [quoted text clipped - 37 lines] > > Mine neither. I hope Becky and her Mom are doing OK. Me too. Peace :-) SignatureRegards, Evelyn (to reply to me personally, remove 'sox") <much snipped> > ... I did do some research on ECT with > AD and the problem doesn't seem to be with the ECT itself but [quoted text clipped - 3 lines] > agitation associated with AD. The AD with the use of the > anesthesia is the problem. I hadn't even thought of the anesthesia aspect of administering ECT (I know a couple of people who had ECT for severe depression/psychosis; some had some short-term improvement, all said they had short-term memory loss). They're not proposing administering ECT *without* anesthesia, are they? <shudder> > <much snipped> > [quoted text clipped - 12 lines] > They're not proposing administering ECT *without* anesthesia, are they? > <shudder> No. That is the problem with those with AD. The anesthesia makes the memory worse, so do you really want to do that to someone with memory problems. That is why most professionals disagree when they do disagree. It's not about the ECT itself but about the anesthesia administered. Last resort in everything I've read. SignatureMare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages he's willing to go right to ECT but not willing to have a proper assessment? He's NEEDS a shrink.... seriously! Yes, being in a different setting will possibly be traumatic for her..... but GEEZ!!!!! he doesn't think that hooking electrodes to her already malfunctioning brain and zapping her with enough electricity to cause "controlled seizures" WON'T????? I would tell him that the only way you'll consider the ECT is after a full assessment - ECT is just too extreme. Or get a second opinion (totally unrelated to him or his office) at the very least. > >Is there not a psychiatric geriatric unit anywhere near you? > [quoted text clipped - 4 lines] > > Becky > he's willing to go right to ECT but not willing to have a proper > assessment? He's NEEDS a shrink.... seriously! [quoted text clipped - 7 lines] > assessment - ECT is just too extreme. Or get a second opinion (totally > unrelated to him or his office) at the very least. Lee I don't think she is listening to us. I think that some people just go along with what the doctor says, no matter what. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") > > >Is there not a psychiatric geriatric unit anywhere near you? > > [quoted text clipped - 6 lines] > > > > Becky snip > Lee I don't think she is listening to us. > I think that some people just go along with what the doctor says, no matter > what. Maybe she is listening to people on the AD list who have many more years experience than we do.Or it could be that she feels like she has enough information and has made a decision on what she knows. Like when you decided to keep Ida on Respridol(?sp) even after I posted several links about the dangers of respridol. Ida did then develop diabetes, right, but no one scolded you about your decision or insisted you take her off, because you know the situation better than any of us would, right. > >Becky, Becky...... I feel quite sure you are making an absolutely awful > >mistake. [quoted text clipped - 3 lines] > before. You guys have scared me silly. Now, I don't know what to do. I only > want to help my mom. Second opinions, and thirds, can't hurt, especially when facing a drastic procedure. To wander a bit -- my sister's sister-in-law, a dancer and dance-teacher, was told CAT scans and MRIs found she had a tumor in her thigh; highly skilled and sincere oncologists told her she urgently needed a bone biopsy. The biopsy would, at best, have left her with a limp for months, and quite possibly would have left her permanently crippled -- just to make certain it was cancerous. The second opinion agreed; she had it scheduled. The third opinion, looking at the same scan results, said it was cartilage that never formed into bone, no reason to worry, no chance of cancer, no call for a dangerous biopsy. The third opinion turned out to be the right one. Back on the subject at hand (and I'll admit I got into the thread late): I've known a couple of people who had ECT, generally for severe depression. Their attitude has been generally that it helped a little, but they wouldn't do it again. I'm skeptical of the suggestion I saw elsewhere that the only aggravated memory loss was the result of the anesthesia and not the ECT itself -- people without dementia generally don't lose major chunks of memory to general anesthesia for other procedures, but they do with ECT, and that's a loss someone already suffering from dementia can far less afford. There's an awful lot out there, medication-wise, to control agitation or depression, and I think I'd try it all before trying ECT. I wish you luck making a decision. SignatureRobert Hi Becky, I understand your apprehension. Like I said before I had never heard of using ECT for someone with AD but Geri and Ruth's responses to you made me understand it a bit more. Sounds like you and the Dr's have tried all the meds you can to calm your Mom down. I don't think you or she can continue this way tho............... You are IMO between a rock and a hard place. Would you feel more comfortable with the chemical restraints? I honestly don't know what choice I'd make but I do trust Geri and her explanation. If you have more questions you can email her directly, she is very good about responding and taking your apprehensions into consideration. Sending good thoughts your way. SignatureMare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages > > Good luck with your decision. > [quoted text clipped - 12 lines] > > Becky I did a search on Google using Alzheimer's + ect, below are some of the results. http://www.cnn.com/HEALTH/library/HQ/00212.html http://www.alzheimers.org/pubs/depress.html http://www.vh.org/adult/patient/neurology/alzheimers/pharmgmt.html Hope this helps SignatureMare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages > Hi Becky, > I understand your apprehension. Like I said before I had never [quoted text clipped - 35 lines] > > > > Becky > She's going Monday morning for evaluation for ECT. I think that's it. ECT destroys memory. I wouldn't do it for a dementia patient! GET A SECOND OPINION. Medicare will pay for it. > > She's going Monday morning for evaluation for ECT. I think that's it. > > ECT destroys memory. I wouldn't do it for a dementia patient! > > GET A SECOND OPINION. Medicare will pay for it. I agree with Dennis. ECT has always been associated with memory loss. For someone who is already experiencing this, it doesn't sound like a good idea. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") Thought everyone here would be interested in this article. The whole thing is worth reading, but section 7.2 is particularly pertinent to the discussion. (long scroll down). http://www.sntp.net/ect/breggin1.htm Mary G. >Subject: Re: It's been a tough two weeks, but...long >From: Mary_Gordon@tvo.org (Mary Gordon) [quoted text clipped - 8 lines] > >Mary G. In my experience, the medical methods of treating psychiatric disorders are controversial. Be it drugs or ECT, there are people vehemently opposed to their use to treat any psychiatric disorder (depression, severe anxiety, bipolar, schizophrenia, obsessive-compulsive disorder, attention deficit disorder), who insist that psychiatrists are only in the business to make a buck, that psychiatrists do not advocate psychotherapy but just drugs and ECT. What I find most troubling about this is that while 1 in 4 or 1 in 5 (according to stats I've read) people at any one time have an emotional disorder serious enough to be considered an illness, very, very few of them get treatment. Not only is there stigma attached to being mentally or emotionally ill, but there is a tremendous amount of fear of psychotropic drugs, and of psychiatrists who are stereotyped as creepy mind-game artists. I've had an anxiety disorder since age 6. If I'd been put on medication for it at the time I'd have had a much happier childhood. I was so afraid of taking psychotropic drugs that I got no treatment at all until I was 20 years old, and even at that I wouldn't go to (gasp) a psychiatrist. I didn't do that until age 29 and it wasn't until then that I got the proper medication and the chronic anxiety consistently under control. I've tried therapy without drugs and drugs without therapy...doing both together are what do the trick for me. I hope I never need ECT but if the day comes that I do, I'll get it in a New York minute. I suffered a major depressive episode at age 11 and if I have to lose a little short term memory to keep it from happening again, so be it. I'd be very upset if activists against ECT and psychotropic drugs took those options from me. No one is forcing them to use those options. Anyway, that's my soapbox. It's not directed at any one person here, but at what I constantly hear in the media. ___ Re-electing Dick Cheney puts me at risk for a migraine attack. |
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