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Old 10-01-2012, 10:31 AM   #1
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Husband has Dementia

Hi All,
I am new to this board so I wanted to tell you a bit about us. My husband is 74 and I am 71, married 48 years, 2 adult children.

He was diagnosed about 3 months ago with dementia but I feel he has had symptoms for a long time but I did not know what it was.

In June 2012, he had a dental appn't then afterwards as he left the office he suddenly felt lost, did not know where he was or anything so he walked out into the parking lot and sat down under a shade tree. He said he thinks he was there 15-20 minutes then he saw our car, got in it and drove home.
When he got home he explained to me what had happened so we called our PCP for an appn't.

He had all of the normal tests looking for a problem including a MRI. These proved nothing at all. My husband has a history of blocked arteries so I am wondering if this could be his problem, could he have blocked arteries in the brain?
Next he was sent to a Neurologist where he took tests for 2 days.
He was given Aricept and given a follow up appn't in 2 months.

In July he, for what seemed to me no reason, got very angry with me one day. I was asking what was wrong, what had I done to anger him but he just got more and more angry. He told me to get out of his home, called me many very bad names which he had never done before, even threatened to hit me and kill me. I called 911. Two policemen came, just talked to him for about an hour after telling me to go into the bedroom and stay there. He calmed down and they left.
We went back to our PCP and told him of this anger which was beginning to happen often and he prescribed Seroquel. It took a few weeks but now it seems to be working, my husband is more calm and relaxed during the day. Early evenings he gets bored and jittery but not mean like before.

Lately I have noticed he has problems with many things such as he cannot make decisions, cannot order from a menu and other things.
He is nervous, crowds, loud noises, etc. bother him.

Is all of this common with a newely diagnosed dementia patient?
I know nothing about this illness so any help will be appreciated.
Thanks!

 
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Old 10-01-2012, 11:08 AM   #2
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Re: Husband has Dementia

Deenie... sorry you are having to deal with this with your husband but so glad you found us. Everything you have described here is text book dementia. Variations of this story is the same for just about everyone who deals with this disease.

We noticed symptoms in the beginning but do not connect it to cognitive loss. It's a bad day, they are stressed, it was a one time incident are some of the things we think. But when that one incident happens (as hubby losing his car) we stand back and wonder. He did not just get dementia when he was diagnosed... it has been present in a very mild for for years. It just got bad enough that a decision was made to find out what was going on.

Nothing will show in the medical test except perhaps some minor atrophy on the MRI. Unless you have a previous MRI for comparison it may not even be mentioned. If diagnosed early enough it will not even show up. There is no blood test for dementia. They just rule out many other causes. The Neurologist or PCP should have given him a memory test. That is the best way to know if there is a cognitive decline. Then you rule out everything else and dementia is what is left.

The blocked arteries can be causing Vascular Dementia if there are blockages in the brain. My Dad had Vascular Dementia. It is the second leading cause of dementia. It may also be mixed Dementia involving both Vascular and Alzheimer's... or other dementia types. Aricept is one of the Memory medications that is supposed to improve cognition. It works for a small percentage of people to slow down the progression. It does not reverse, cure, or stop the progression of the disease and it does have side effects. Please discuss the side effects with your pharmacist. They are much more informed about medication than your doctor. Considering his behavioral changes after the Aricept I would definitely talk to the pharmacist.

Seroquil is used frequently for behavioral changes in those with dementia. Some respond well, as your husband. Hopefully his outburst are under control. These outburst are a function of his cognitive decline. Not only is his memory impaired but his ability to understand and respond correctly. You may never know what angered him because it was something in his brain, not something you did. His inability to comprehend what is going on is the problem. Once he is agitated he is less able to understand. He responds on a basic fight or flight adrenalin level. You did what was best. You also need to know that he can not tell you what is going on in his mind. He doesn't have the words and ability to explain what he is feeling... he is just reacting.

Evenings are usually worse. It is known as Sundowning. Science does not have a explanation but it is a known reaction to the end of the day by many if not most with dementia. It may help if you keep the house well lit at that time of day, keep life routine and calm, and avoid triggers that upset him. Sometimes a nap late in the day can help as well to avoid him being over tired at this time of day.

Making decision, ordering from a menu, and such involve cognitive awareness that he obviously no longer has. For Dad, and Mom (who has Alzheimer's) I would make suggestions. "I would like to go out to eat." That indicates I would like to go out to eat and it is a yes or no answer. Makes it easy for them. Once there I would say... "You always loved the XXX". That gave him one choice, yes or no, and much easier then dealing with all those words on the menu. If you know he has difficulty with even simple decision you can help him by making it easy.

Crowds and loud noises will bother him because he can no longer deal with all the sensory input. They ability to focus is lost so they can not separate conversations. They hear everything at the same level and that is overwhelming. Large crowds are over stimulating when you don't know what to do. Loud noises are startling. They have no basis for these noises and jump as we do when we hear something we can't identify.

Routine is going to be your friend. Keeping him in a set routine will make him calmer.... and your life better. We like to go out. We like noisy crowds and excitement. They totally and completely overwhelm his ability to deal. I quiet dinner for two at home will become the best times.

Since he has gotten lost already you need to be aware of wandering. It is not unusual for someone with dementia to go out to get the mail and not come back. Keep an eye on him and be sure there are locks on the doors at night that he is unfamiliar with.

A word to the wise. If you do not have durable power of attorney, medical power of attorney, will, and living will done for him please do it NOW. It will make life so much easier later when you are responsible for his total care. Also make sure you name is on all accounts... banking, financial, utilities, credit cards... everything. That way you will not have a problem when changes need to be made. A good elder lawyer can help you with this. Check prices because not all are the same. If cost is a problem call the bar association and find a lawyer that can do it pro bono in your area. Just please get this done ASAP.

Again... glad you found us and know each of us here is going through the same things. We are here to support each other and here for you

Love, deb

 
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Old 10-01-2012, 01:09 PM   #3
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Re: Husband has Dementia

Deenie,

So sorry that your husband has dementia. Do you know what type of dementia? It makes a difference. Alzheimer's is one type of dementia. Vascular dementia is also the second common one. Different types of dementia can have different symptoms or timing when the "episodes" happen.
Indeed it seems common that many people have experienced the big change when the dementia first shows up in the surface. Before, he might have it hidden and didn't show it obviously. Now it is showing.
Like Deb said, routine and quiet environment help. It sounds like he almost forgot who you were and so he was mad at you because he didn't realize you were the wife. Maybe he was anxious himself that he didn't understand what you were doing there. Usually it is too early for him to not recognize you. But if he is stressed, he may think you bother him. One thing you can do is not to argue with him over the stuff when you deal with him. Gently ask him what he wants and etc. Once he gets angry, it is too late to say anything. I am glad you called the police. Sundowning is common for Alzheimer's. At sunset or in darkness, he would feel insecure and anxious. I think his biological clock becomes different with dementia. Turn on the light in the room and it will help. Close all the curtains if the sky is dark outside. Have early supper may help. (Say 5pm.)

You need to make sure you or your adult kids have POA and that he has health directive and living will. Since he has been diagnosed, you need to prepare for legal access. Make your adult child the backup POA. In the future, in case you cannot live with him, you may need to seek for alternative and adult kids can be helpful.

It is a long journey. We had taken care of my late FIL for 7 years or so and it was not easy. It is a long shot. Also different level or stage requires different care so it is not just one way but there are many ways to deal with this. Home care at home is helpful. AL or memory unit may be considered in late stage.

Hugs,
Nina

 
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Old 10-01-2012, 01:17 PM   #4
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Re: Husband has Dementia

Deenie, everything Deb wrote is spot on. Also, hopefully his dr. has recommended that he not drive? Individuals with AZ have good days and bad days where they sometimes can't remember where they are, where they're going, how to operate a car. Their decision making can be slower along with their response time.

Definitely look into your POA, medical and financial. At some point, he may need to see an elder care dr. to do an memory test to provide markers for checking his memory in the future. They seem to have a better understanding of AZ than just a regular dr.

Are your children aware of this? Are they going to be able to help you navigate this?
I hope that they will help relieve you some. Doing it by yourself is difficult. You are in my prayers

 
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Old 10-01-2012, 01:24 PM   #5
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Re: Husband has Dementia

Deenie you do need to know that this disease is not constant. There will be good days when your husband is connected and will act almost normal. There are other times when he will be completely confused and may not know who you are or what is going on at all. It is this up and down roller coaster ride that is emotionally and physically draining for you. Make the most of the up times to carry you through the not so good days. Also know that he would not act this way if his brain was not damaged. Dementia is much more than just memory loss. It is brain damage that affects every aspect of his being. So hold on to the good as much as you can. Keep your thoughts as positive as possible.

I highly recommend the book "Coping with Alzheimer's... A caregiver's Emotional Survival Guide" by Rose Oliver and Fances A Bock. There are lost of books that tell you how to take care of him... this one tells you how to take care of YOU! There are two people on this journey. His is important and you need to take care of him. BUt in order to take care of him you have to take care of yourself. To that end I do hope you have some help. Ask the grown children to give you a break. Just a trip to town can be refreshing. Let one stay with Dad and you go stay with the other for a good night's sleep. Or bring in an outside care giver for a few hours a week or a day. This is not a sprint but a marathon so you need to pace yourself and get the time you need for physical and emotional renewal

Love, deb

 
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Old 10-01-2012, 05:49 PM   #6
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Re: Husband has Dementia

I can not add to all the good advice you have received , just wanted to say hi and tell you that you are not alone, we are a great group who ask questions and receive answers from thoses that have been or who like you are navigating their way through a maze a mind boggling action of our loved ones. There are no right answers just the one that works for you. It sounds like your husband is in the early to mid stages of some form of Alzheimer/dementia . It is so important for you at this time to inform the kids of what is happening, believe me when I say they will want to know and help. Please do not hide it from them. As you have seen already this is a very unpredictable desease and you need to be able to call on someone at anytime for some kind of help. Please reach out to friends and relatives, now is the time to plan for any and all contingencies. If ever there was a time to get your ducks in a row it is now while you husband can understand, perhaps you want to move closer to one or both of your kids, maybe some sort of adult living situation is in the cards, I know you will say it is to soon to make these kinds of descissions but really it is not, the more prepared you are now the easier it will be for you to step into the roll of caretaker.
This is a long road that you are starting out on, we are here with you, beside you.

Big hugs of strength coming your way from Judy
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Old 10-01-2012, 06:02 PM   #7
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Re: Husband has Dementia

Thank all of you for your reply.

It is good to know what I am seeing with my husband is normal for a person with dementia. For most of our married life I have known he has a quick temper, this does run in his family. It is strange but he is one of 8 children and 6 of them have this same quick temper. i knew his mother and grandmother which were the same. I would love to know if this is in any way connected to dementia. I knew he could get angry quickly over little things but had never seen him act as he did the day I called the police.
He was like a person I did not know at all!

My husband has had open heart bypass surgery twice plus stents after those surgeries, his siblings have also had bypass surgery so this is why I am wordering about Vascular Dementia.

His two doctors have been very understanding and respond to our questions but it's difficult to know what to ask when you know nothing about this illness. Not very much has been explained about what to expect from either doctor. I am reading online and beginning to understand somewhat but not nearly enough.
To our knowledge, this is not in his family ancestry but then most did not live past the age of 65 so it could have been and it just had not shown up yet.

Thank you also for telling me to see an attorney for POA as well as other things. Everything we own is presently in both of our names so do I still need to get that changed? I have mentioned to him that we need to see an attorney to get wills made but he tells me we cannot afford an attorney and besides our children will not complain or fight over whatever small amount we leave for them. I am sure he is right about this but I am wondering if we do not have wills made then will probate take a portion of whatever we may have including our home which is paid for.

As for a living trust, he has many times said he does not want to be kept alive with machinery so I pray I can make that decision when the time comes assuming he goes before me. Our children also know of his wishes.

I know we need to see an attorney but since he does not think we need to or can afford one, I don't know what to do because the more I try to talk to him about it the more upset he gets. Is it absolutely necessary?

I am trying very hard to keep quiet, not upset him with anything and do everything the way he likes, I don't want to "rock the boat".

Stress is getting to me but I am trying to handle it. I have always been fairly strong and able to handle whatever was happening.

Our children tell me "Mom don't worry so much, Dad is just getting older and besides he is so much better since getting on his new medicine." He doesn't see them often and his phone conversations with them is great so they do not see or hear him as he is. Our daughter said she listens to his stories over and over as he repeats them to her but has always ignored it as just the way her dad is.
He is great at covering up his memory loss to most although we do have one neighbor friend that told me she has noticed, probably others have also.

Your knowledge and guidance is appreciated. THANK YOU!

 
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Old 10-01-2012, 07:00 PM   #8
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Re: Husband has Dementia

Deenie, I just read your other post and it sounds like your husband respects his dr, enough to follow his advice, if this is so perhaps you can have a talk with the dr. And ask for help getting a poa. Perhaps your dr. Can suggest it would be a good thing for both of you to have a poa. This would take the onus off of you..have him stress that it would be like insurance that should something happen he and you would be able to count on someone stepping in and helping..

Hugs judy
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Old 10-01-2012, 07:45 PM   #9
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Re: Husband has Dementia

Deenie... I too wonder if it is Vascular Dementia. Your husband sounds like my Dad and his family. Most of his brothers did not live to age 60. Dad had two heart attacks, 5 bypasses, and his final stints were put in the bypasses. He also had PAD (peripheral artery disease) related to the low blood flow from his heart and the veins they harvested for the bypasses. There was some blockage in the carotids as well. If there is blockage everywhere else... why not the brain? Dad was misdiagnosed with Alzheimer's to start with but it was evident by the progression that it was not Alzheimer's but Vascular Dementia. He seemed to take a steep downward slide after each cardiovascular event.

A quick temper doesn't have anything to do with dementia. That is a personality trait. My Dad was the very even tempered rarely losing his temper but once he was into his Vascular Dementia he could snap. The night your husband became so aggressive... it was nothing like anything he had been before because it was a result of the disease.... not a personality trait.

Sad to say many doctor's do not have a clue what to tell you as to expectations in this disease. Unless you have lived it, you truly don't understand. They diagnose and smile and send you on your way. This is the ultimate on the job training!!

Yes, the POA is imperative if you want to handle his affairs. You can sign for you and deal with some things but you can't do some things without his signature or a POA. There will come a time when he will be unable or unwilling to sign. That will leave you in a mess. As for making the final decisions for him.... you need that living will/medical POA to make those decisions. Do what you can to convince him. Tell him it is for the children. If he dies without a will the kids may not argue but the distribution is up to the courts and the court may not do it as he wishes. Tell him you are doing it for the children and get all papers done at once. Contact the lawyer, tell him what you want, and have him do the paperwork before your husband goes in. Then just let him come for the signing. Ask if you can pay before you go or afterwards so he is not confronted with money issues. Plead to his wanting to do what is right for you or the kids.

This is a very stressful job. Even those who seem to deal with anything have trouble with this one. That is why I say you must have some help and you have to take care of yourself. If something were to happen to you, what would happen to him?

Yes, he will be able to cover his inabilities for a while, especially for a short time in front of other people... and then he will fall apart when it is just the two of you. He will deny that anything is wrong with him. In his mind he is just find and everybody else has lost their last brain cell

As for the kids, you need to explain to them that dementia is NOT just old age. It is not just repeating stories or not remembering. It is a disease that damages the brain and is progressive. It affect all brain functions and levels of cognition. The Seroquil may have stopped the aggressiveness for now but you have so much more to deal with. It will get worse in many ways. You need to let them know that you are going to need some help.... there help. It is time for a family chat between you and the kids to impress on them exactly what is going on. Do they live close by? I remember the stress Mom was under trying to take care of Dad.

Please do what you can to get the legal work done ASAP......

Love, deb

 
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Old 10-02-2012, 04:29 AM   #10
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Re: Husband has Dementia

Dear Deenie, Very very sorry that you are going through this. Deb/Gabriel is our fountain of wisdom here. In my worst times wrestling with how to deal with my spouse, who is significantly younger than your husband, it has been her clear voice of reasonableness that put the perspective back in place for me.

I have a question about the episode when your husband lost his temper, if you don't mind elaborating. I am wondering what happened in the aftermath. Was he apologetic? Did he recognize that what he did was irrational? Or did he act as if it never happened? Or did he insist that he had due cause?

One of my wife's most pronounced and most problematic symptoms was her temper. She has always been a hot head, but much restraint seemed to have been lost. Lately, in some of the more dramatic "episodes", she still insists she was right and dwell on it when it was apparent to everyone else otherwise.

Also about the driving. I can't agree with everyone else more. However, I have to admit that I am having great difficulties in making that happen with my wife, and I cringe every time she gets behind the wheel. ..... Get this, Deb: her birthday is coming up, and she is asking for a GPS for the car! This is another story for another thread.

 
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Old 10-02-2012, 05:14 AM   #11
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Re: Husband has Dementia

Good idea Judy! Thanks.
Deenie

 
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Old 10-02-2012, 07:58 AM   #12
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Re: Husband has Dementia

There is a way to do POA. There are forms online everywhere. You just need a witness to notarize it while you and your husband sign. Joined accounts are not enough when he goes incompetent and wants to "sue you". He could kick you out of the accounts one day for who knows... Once you have the POA, you have the power to deal with the authority. The authority would go to the POA or the husband. If you don't have POA, you have no power over his welfare in terms of authority and etc. If he has no living will, you cannot prove to the hospital about what he wants. DNR? No IV? What if he wants it and the doctor does not want to? A POA has more power to protest.
You have not seen how bad he will get yet. Sometimes he would get so bad that he would not know you or recognize your power. He can be tricky.
Yes it is typical that these patients can talk to people on the phone making it look like he is OK or that he is not insane... On the phone he could lie to people saying it is ok.
You still go with what the husband says. One day he will forget all about his finances and then you will be the only one who can handle the finances so POA is vital.

Your kids need to see him more. Invite them to stay over the weekend and see how their Dad behaves.

Hugs,
Nina

Last edited by ninamarc; 10-02-2012 at 07:59 AM.

 
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Old 10-02-2012, 08:00 AM   #13
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Re: Husband has Dementia

[QUOTE=Luau;5065700]

I have a question about the episode when your husband lost his temper, if you don't mind elaborating. I am wondering what happened in the aftermath. Was he apologetic? Did he recognize that what he did was irrational? Or did he act as if it never happened? Or did he insist that he had due cause?

After he was so angry, he always walks into "his" tv room, slams the door shut then stays there for an hour or two. When he come out of the room he acts as if nothing has ever happened. He is in a much better mood and usually is hungry asking if I would like to go out to eat. Is this his way of saying he is sorry? I'm not sure but he never apologizes.

 
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Old 10-02-2012, 08:05 AM   #14
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Re: Husband has Dementia

I don't think he felt sorry. I hate to say. He just forgot all about it after 2-3 hours! Well maybe he realized he was in a panic but I assure you he would not really remember what happened or understand why it happened. He just forgot about the vital part of it. He didn't realize he was abusing you. This is dementia. Also even if he remembers it, he remembers it in his wrongful version acting like he "forgave" you... No, dementia does not allow him to behave normally and he won't come back to get real for being sorry.

Hugs,
Nina

 
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Old 10-02-2012, 09:13 AM   #15
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Re: Husband has Dementia

Dee, that is usually as close to an apology as you will get. Early in Mom's disease she would have some recollection of her "southern hissy fits" and we did get some apologies at that point. By the time she hit the mid stages she would do just as your husband does now. She could close herself off in her bedroom and come out some time later as if nothing had happened. In her mind, with the memory lapses... nothing had happened. Those with Dementia are very much in the moment. There is no before and no after... there is just NOW! Their brain is filled with confabulation.... a mixture of the input they receive and the mysterious way the mind fills in the missing facts. I did find it useful to back away from a fight. If it was safe to leave Mom or Dad alone for a while to calm down it usually helped. I would eliminate all stimulation possible. Cut off the TV, radio, other sources of noise, and either isolate them or sit quietly. It was almost like a kettle running out of steam with no stimulating input. What you can not do is argue with them. That only fuels the fires because they KNOW they are right!

Love, deb

 
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