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Medical Forum / Diseases and Disorders / Alzheimer's / June 2008Dad's Problems
My Dad has what I guess is late stage 3 or early stage 4 AD. His decline during the past 6 months is dramatic. Most noticable is that is long term memory is getting bad too. He often says he feels "really strange"; i.e., "out of touch with reality" or "in a fog". This is very disturbing to him so consequently it's very disturbing to me. Is this common with AD and is there anything to be done about it? He is already taking Namenda and the Exelon patch. He's very anxious a lot of the time and takes Xanax several times a day. Also, he is itching a lot lately on his back and one arm. It could just be dry skin but I was also wondering about some reaction to medication. About the only thing new is the Exelon which he has been taking for about 45 days. Thanks, David Dad's Problems Group: alt.support.alzheimers Date: Wed, Jun 18, 2008, 6:56pm (PDT+2) From: djharrid@bellsouth.net (DJ) My Dad has what I guess is late stage 3 or early stage 4 AD. His decline during the past 6 months is dramatic. Most noticable is that is long term memory is getting bad too. He often says he feels "really strange"; i.e., "out of touch with reality" or "in a fog". This is very disturbing to him so consequently it's very disturbing to me. Is this common with AD and is there anything to be done about it? He is already taking Namenda and the Exelon patch. He's very anxious a lot of the time and takes Xanax several times a day. Also, he is itching a lot lately on his back and one arm. It could just be dry skin but I was also wondering about some reaction to medication. About the only thing new is the Exelon which he has been taking for about 45 days. Thanks, David ========================================== Hi David: I'm sorry to hear about your Dad. Alzheimer's Disease is very similar to Ramsay-Hunt Syndrome discovered by an American "icon", the late Dr. James Ramsay Hunt in 1907, (101 years ago). This virus enters the head through the ear and travels to the brain. The word "syndrome" means MANY things. Many complain of a foggy brain, difficult to think clearly. Unfortunately, there is no medication available that effectively targets this virus which is the underlying cause of AD. Why the late Dr. Hunt's "masterful" work wasn't followed up on after his death is truly a mystery and a crime to all humanity. Ramsay-Hunt Syndrome can cause many symptoms depending on which area of the brain the virus attacks. This is a complex disease, what affects one may not affect another in the same way. Some of the major symptoms include poor vision, hearing loss, balance, digestion, hair loss, obesity, prolapses, muscles and nerves, bones, anxiety, red rashes, blisters, etc. If your asking how can this be, its because this virus attacks the brain and the brain is the motor of the entire body. AD is the chicken-pox virus and the cause of intense itching. The National Institute of Neurological Disorders and Stroke (NINDS), calls it the Herpes Zoster Oticus. The intense itching can drive one nearly crazy. Its best to refrain from scratching. Once you start, its hard to stop. Viruses move into the cells and not circulating in the blood. From a routine lab test in the earlier stages, patients are told they're in good health when nothing could be further from the truth. The National Institute of Neurological Disorders and Stroke (NINDS) suggest anti-viral drugs or corticosteroids which may bring relief to some symptoms but not the underlying cause. This disease is spreading, why the medical profession chose to ignore Dr. Hunt's work requires an explanation. All viral discoveries are listed with the American Medical Association. If you want information on the Ramsay Hunt viruses, contact AMA, Ronald M. Davis, President, 515 N. State Street, Chicago, Il 60610. It's the viruses that are killing us right and left. There's hundreds of viruses out there but few studied. I've been trying to find research on RHS for the past 16 years and haven't found one yet. When it comes to war and outer space, money's no object, but when "We the People" need money for medical research, "Sorry folks, there's no money!" EddyJean > My Dad has what I guess is late stage 3 or early stage 4 AD. His decline > during the past 6 months is dramatic. Most noticable is that is long term [quoted text clipped - 14 lines] > > David David, we always try to help newcomers to this group with good sound advice. There are some with strange theories who post here, who really ought to be ignored. We do have a collection of regular trolls, just like all the newsgroups do. That said, your dad should see a doctor if regular skin creams do not get rid of the itching. I find that Gold Bond extra strength lotion in the green bottle is very helpful for itching. My father is 95, and like you said, often elderly folks do tend to get dry skin. He had some itchy patches and it really worked for him. Be sure you get the one in the green bottle as they make several kinds and the others don't seem to do the trick as well. If the lotion doesn't help his itch, the doctor would be your best bet. People who have alzheimers often get strange disconnected feelings like your dad is reporting. My mother in law had them too. The medication could add to that, but it helps in other ways. We found she was better off with the medication than without, even with the spacey feelings she reported. Some have decided the opposite. Only you can know which is best for your father, with close observation. The anxiety he is feeling is often also a part of the illness. In my mother in law's case they put her on a rather strong dose of Zoloft, an antidepressant medication. It really helped her a lot. You might want to ask the doctor next time you go in for a visit if a change in medication might help to relieve his anxiety. Good luck....  SignatureBest Regards, Evelyn "Like the light of the sun moon and stars, may the love, compassion and wisdom shine forth. May they strike every single living being and dispel the darkness of ignorance, attachment and hatred that has lurked for ages in their being. When any living being meets with another may it be like the reunion of a mother and child who have long been separated. In a harmonious world such as this may I see everyone sleep peacefully to the music of non-violence. This is my dream." -- 17th Gyalwa Karmapa Orgyen Trinley Dorje Evelyn, I've written to the group before and read posts many times so I'm somewhat familiar with the group. I've even communicated with you. Still I'm not too familiar with the course of AD although I'm aware of the end result and the fact that there is no cure. I don't expect a cure, I only hope to make Dad as comfortable as possible and hopefully maintain my sanity during this process. My neighbor and good friend literally lost her sanity, in part due to caring for her AD mother. She was committed to a mental hospital, had shock treatments, etc. But I digress. I'll try the Gold Bond, thanks. But still this itching has come one rather suddenly in places where he hasn't itched before. An antidepressant is a good idea, except that Dad has already been through the major families of antidepressants and most all make him VERY aggitated. He seems to work backwards on him as compared to most people. Thanks, David >> My Dad has what I guess is late stage 3 or early stage 4 AD. His decline >> during the past 6 months is dramatic. Most noticable is that is long term [quoted text clipped - 42 lines] > > Good luck.... > An antidepressant is a good idea, except that Dad has already been through > the major families of antidepressants and most all make him VERY aggitated. > He seems to work backwards on him as compared to most people. that sounds more like the reaction that happens with frontal lobe dementias like lewy body, rather than AD. how thorough was his diagnosis? if he has parkinson's lewy body dementia is more likely. you might try googling "frontal lobe dementia" for more info. Dad had the normal round of tests: cognitive, MRI and PET scans. The MRI was negative. I can't recall just what the doctor said about the PET but as I recall he said there was diminished activity in the right front and left parietal lobes, or was it right parietal and left frontal? The doctor said it wasn't exactly characteristic of AD but that AD was the most likely diagnosis. >> An antidepressant is a good idea, except that Dad has already been >> through [quoted text clipped - 7 lines] > likely. you might try googling "frontal lobe dementia" for more > info. > Dad had the normal round of tests: cognitive, MRI and PET scans. The MRI > was negative. I can't recall just what the doctor said about the PET but > as I recall he said there was diminished activity in the right front and > left parietal lobes, or was it right parietal and left frontal? The doctor > said it wasn't exactly characteristic of AD but that AD was the most > likely diagnosis. Dear DJ; AD has a pattern of beginning in the rear of the brain and moving forward. The parietal lobe does count as being the rear of the brain. In Frontal Lobe dementias, our loved one retains more of who they are personality wise, and even functionality, but there are many mood issues - problems with finding words leaves them frustrated; impaired executive functioning means they can't make their behavior conform to what is appropriate, so anger flares. Maybe there is some antisocial or even aberrant behavior. Compulsions appear early. They can remember how to wash dishes or other things that are strong habits, but can't cope with anything 'new,' though they remember things more that have an intense emotional component - like fights, or something which made them fearful. It would be worthwhile to check with the neurologist who ordered the PET scan to find out whether one lobe shows a greater percentage of atrophy than the other. My FIL had a vascular dementia (dementia caused be reduced blood flow from the brain because of cardiac and vascular issues) that affected the frontal lobes first. They were trying antidepressants, but FIL became belligerent and refused all medications. He wound up in the hospital for failing to take his cardiac meds. During his stay, the staff realized he had been covering his issues during office visits but was really far more impaired than originally thought. Staff refused to discharge except to a care facility. If there is no enduring and/or medical power of attorney, you need to get one pronto. All that is needed is for your DAD to understand what the paperwork is at the time of signing. He can be totally disconnected before or after. But for the five or ten minutes, he needs to understand and choosing to do this. Then, you can discuss with his doctor what the options might be. FIL wound up being inpatient in the psych ward for a few weeks while they balanced his meds (too long because of issues with the social worker assigned to the case who thought MIL was looking for placement; MIL thought Social Worker was doing it...). Even with a frontal lobe dementia, FIL was so much more his nicer self, amiable, and cooperative. Mostly, not raging or as fearful anymore. It was worth it. BTW - my husband (and his father) are ones with the similar agitation reaction to Benadryl (my daughter, too). He may simply have an idiosyncratic reaction to these kinds of meds, as opposed to the reaction being from the dementia. He needs a doc willing to figure out how the ones which cause reactions are similar, so he can try another sort of med. Its hard finding a doc willing to take the time and really think about it. Adelle > Dad had the normal round of tests: cognitive, MRI and PET scans. The MRI was > negative. I can't recall just what the doctor said about the PET but as I > recall he said there was diminished activity in the right front and left > parietal lobes, or was it right parietal and left frontal? The doctor said > it wasn't exactly characteristic of AD but that AD was the most likely > diagnosis. sounds like you need a second opinion. was this a neurologist with geriatric experience, or just a generalist like a family practicioner or internist? diminished frontal lobe activity sounds like it could be a frontal lobe dementia, not AD. > Evelyn, > [quoted text clipped - 79 lines] > > - Show quoted text - David: I noticed this part in your last message. ----- An antidepressant is a good idea, except that Dad has already been through the major families of antidepressants and most all make him VERY aggitated. He seems to work backwards on him as compared to most people. ----- Your Father is not necessarily working backwards. It can be extremely difficult to get medications correct. Although my experiences have been nothing compared to the living hell that some here have gone through, I can tell you that it's very important to get a persons medications correct. My own Mother became horribly sick using Aricept - which I'm sure works great for others. Excelon combined with a popular anti- psychotic made her extremely paranoid, but I'm sure either are fine with other people. Depakote made her so tired I practically had to drag her from place to place, yet another woman I met sweared by it for her Daughter. Zyprexe from Eli Lilly did the trick for my Mother, yet you read others have problems with that. Sometimes it's getting the right medications and dosages. It's not easy and as you know and mentioned, there's no cure. Just stick with it. Your Father is VERY lucky to have you. Charles R. Whealton Charles Whealton @ pleasedontspam.com Dad has a long history of problems with medications. For example, Benadryl tends to get Dad agitated whereas most people become sleepy. So far as antidepressants go at least two have left him so agitated that we made trips to the hospital where he was given injections of Ativan and/or Haldol to calm him down. It is questionable to me whether it is worth the agony and hospital trips to find just the right antidepressant. If Dad would consent to go in-patient then perhaps something could be done, but thus far he refuses to go into a psychiatric hospital. Well, he did consent once, about 2 years ago, but checked himself out after only a few hours. On Jun 19, 8:05 pm, "DJ" <djhar...@bellsouth.net> wrote: > Evelyn, > [quoted text clipped - 94 lines] > > - Show quoted text - David: I noticed this part in your last message. ----- An antidepressant is a good idea, except that Dad has already been through the major families of antidepressants and most all make him VERY aggitated. He seems to work backwards on him as compared to most people. ----- Your Father is not necessarily working backwards. It can be extremely difficult to get medications correct. Although my experiences have been nothing compared to the living hell that some here have gone through, I can tell you that it's very important to get a persons medications correct. My own Mother became horribly sick using Aricept - which I'm sure works great for others. Excelon combined with a popular anti- psychotic made her extremely paranoid, but I'm sure either are fine with other people. Depakote made her so tired I practically had to drag her from place to place, yet another woman I met sweared by it for her Daughter. Zyprexe from Eli Lilly did the trick for my Mother, yet you read others have problems with that. Sometimes it's getting the right medications and dosages. It's not easy and as you know and mentioned, there's no cure. Just stick with it. Your Father is VERY lucky to have you. Charles R. Whealton Charles Whealton @ pleasedontspam.com > Dad has a long history of problems with medications. For example, Benadryl > tends to get Dad agitated whereas most people become sleepy. So far as [quoted text clipped - 5 lines] > refuses to go into a psychiatric hospital. Well, he did consent once, about > 2 years ago, but checked himself out after only a few hours. That kind of reaction sounds more like one that bipolar folks have. Was he bipolar before the dementia? David, we always try to help newcomers to this group with good sound advice. There are some with strange theories who post here, who really ought to be ignored. We do have a collection of regular trolls, just like all the newsgroups do. ========================================== There you go again, Evelyn, stirring up the pot. You can't stand it when someone comes along with different views from yours. Your right and everyone else is wrong but have no facts. Unless I misunderstood, I think David was speaking about intense itching and not an itch from a chigger bite. There is no medicine available for the intense itching and anti-depressants do nothing to fight back the disease. The U.S. just spent another $460 million on another orbitor to Mars discovering ice when we have ice right here on Planet Earth as people continue to die needlessly because of no serious research on AD and none on Ramsay-Hunt Syndrome. EddyJean Evelyn, I tried the Gold Bond "Green Label" as you suggested. (BWT, there used to be a Jack Daniel's "Green Label" and an even cheaper "Lem Motlow" brand of Jack Daniel's. I know as I live about 30 miles from Lynchburg, TN) Thus far the Gold Bond seems to do the trick. Thanks! Having said that I'm still confounded as to what has this itching stirred up. For years it has just been his back, but now he's scratching both arms and his stomach. I changed laundry detergent for about a month so that could be the problem, or it could be related to a possible infection. Don't know. David >> My Dad has what I guess is late stage 3 or early stage 4 AD. His decline >> during the past 6 months is dramatic. Most noticable is that is long term [quoted text clipped - 42 lines] > > Good luck.... > Evelyn, > [quoted text clipped - 8 lines] > > David Hi David, I am so glad it helped. My dad found it did the trick for him too. By the way, the laundry detergent could be the culprit. I find I am very allergic to a lot of them. I recently got a new washing machine, and it has the option of an extra rinse cycle. It also uses special detergent, which I don't seem to have a problem with because the amount they say to use is very small. But before I got the new machine I was using Tide Free, which is really good as it doesn't have a lot of the allergic culprits in it. Besides that it cleans the clothes really well too. You might want to check it out. Another thing.... all that I have read seems to indicate that there are certain kinds of dementia that have this "opposite" reaction to a lot of the drugs used in treating alzheimers. Your dad may have one of those. Not sure, but I think someone else also mentioned this earlier. This is a quiet group and I don't check in often enough. SignatureBest Regards, Evelyn "Like the light of the sun moon and stars, may the love, compassion and wisdom shine forth. May they strike every single living being and dispel the darkness of ignorance, attachment and hatred that has lurked for ages in their being. When any living being meets with another may it be like the reunion of a mother and child who have long been separated. In a harmonious world such as this may I see everyone sleep peacefully to the music of non-violence. This is my dream." -- 17th Gyalwa Karmapa Orgyen Trinley Dorje Re: Dad's Problems Group: alt.support.alzheimers Date: Sat, Jun 21, 2008, 7:21pm (PDT+2) From: djharrid@bellsouth.net (DJ) Evelyn, I tried the Gold Bond "Green Label" as you suggested. (BWT, there used to be a Jack Daniel's "Green Label" and an even cheaper "Lem Motlow" brand of Jack Daniel's. I know as I live about 30 miles from Lynchburg, TN) Thus far the Gold Bond seems to do the trick. Thanks! Having said that I'm still confounded as to what has this itching stirred up. For years it has just been his back, but now he's scratching both arms and his stomach. I changed laundry detergent for about a month so that could be the problem, or it could be related to a possible infection. Don't know. David ========================================== David, The itching your father experiences is caused from the chicken pox VIRUS but has a mind of it's own. This disease is progressive, for some it moves slow, others fast. The virus moves from one site in the brain to the next. Everyone has a different body chemistry, what works for one may not work for another. If the Gold Bond lotion continues to work, that's great. Anythng that helps to relieve the itching. I experience intense itching as probably your father. If the lotion stops working, its best not to scratch or it becomes difficult to stop. When the itching reaches the unbearable stage, bathe or shower with Aveeno, a dermatologist-recommended moisturizing bar. Sulfur soaps are best but hard to find. I've seen it in a catalog that arrives in the mail from time to time. If you travel, Mexico used to sell pure sulfur bars at their drug stores.. There are no prescription drugs (to my knowledge) that effectively stop the itching. Through alternative sources, I'm very deficient in sulfur, why the routine lab tests don't check for this is beyond me. EddyJean I don't have dementia (yet, anyway!) but I have a spot on my arm that has itched like crazy for months. No overt redness (except from scratching), no rash, just burning itching. My doc says it is an anxiety reaction, similar to "hot spots" that dogs get. He gave me a prescription cream that gets it under control; I had already been through all the OTC stuff, including Gold Bond. So it may not be a product of the dementia but of the anxiety that often accompanies dementia. Glad the Gold Bond is working -- just wanted to let you know something stronger is out there if you need it eventually. Songbird > Evelyn, > [quoted text clipped - 8 lines] > > David > Thanks! Having said that I'm still > confounded as to what has this itching stirred up. For years it has just > been his back, but now he's scratching both arms and his stomach. Dementia means that brain signals are being scrambled, and in many cases patients have increased sensitivity to stimuli of all types --- visual, auditory, skin, pain... Go buy a copy of "The 36 Hour Day" by Mace & Rabin. Lots of info there about these kinds of symptoms. |
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