I took Paul back to see his dr. on Friday. He asked how things were going,and I told him Paul was doing very well,still some issues but NOTHING near what he was like last summer.Went over the new phyc test with him-he said this test was sooooo much better than the one 2 years ago.Of course I already knew how well he had been doing.The dr. wanted my reasons for WHY I thought he was so improved-I told him I thought because we had gotten the ammonia level down,stopped the phyc drugs he was taking-stopped the nemenda and keep a close watch on his NPH(fluid on the brain) with the shunt. The dr, said yes that may all be correct but I want you to start him on Aricept,I said no,we did not want to put him on new drugs,he said well I am the dr.and I think we need to put him on this. I said No-I do not like the side effects and I do not think there is enough proof that this drug works well enough to risk Paul having a set back!The dr. then stood up and said I am writting the presc. for it--I said you can write all you want BUT I am NOT filling it.The dr. walked out the door and said "see you in 3 month". At this point Paul looked at me and said"I thought you were gonna hit the man"---
Good for you!! WE need to stand up to the doctors when we know the situation better than they do.However don't know what we'd do without them,I still think your right.
i dont know, maybe for me i would try the very low dose of aricept just to test the waters if it was warranted. in some its a great help others may not respond well. we know some have tried it and if it didnt work quit the drug. if it would help though maybe it would be worth trying. its a hit/miss as we never know how our spouses will react. but thats just my opinion. divvi
They are drugs that are suppose to slow the progression of AD. My dh was on Namenda for over 4 years and I thought it worked very well in slowing the progress and then when it didn't seem to help he went down hill very quick. But, I was very pleased with how it worked for those 4 years. I was wondering from your comments why you didn't want to at least try them. On several occassions I asked my dr. if he thought they were still working with my dh or could I take him off of the drug. The doctor's reply was OHHH NOOO....they seem to be working and he needs them to stay as stable as possible for as long as possible.
Let me explain a little more into my reasoning- Paul has never fit with the drs. keep saying is Alz. he has some of the symthoms but alot of them have reversed since we got the ammonia level down to normal. His ability to do lots of normal everyday things comes and goes. Our younger dr.(before this one) was nearly convinced that instead of Alz.-most of Paul's problems stemmed from the 30 some years of being doctored for phyc problems-very heavy pres. drugs for all these years-but you know back then I thought ALL the drs. were right! Then in 2008 the dr. said he had NPH so a shunt was put into his brain to drain fluid-just a few weeks after that he had a blood clot in his brain which had to be removed. Anyway this younger dr. thought due to a lot of brain damage he was seeing a form of demintia that did not take the same track as Alz.-so at that time they began to get Paul off all phyc. meds and got the ammonia level down and the improvement was unbelievable. He suggested that we NOT add anything unless there was some memory loss to warrent trying the meds. As in any teaching hospital the drs. are switched quiet often so we now have an older dr. that will not listen to MY very long explanation of how we got to the situation we are in now. So I will stand my ground and keep the meds to as few as possible.We tried the namenda and it turned him into a zombie- thanks for all the feed back .
I'm a firm believer that no one, including doctor knows your husband like you do. And, if you are comfortable with not giving him the durgs then I am in your corner.
paulc-the dr,says he is ---but sometimes I have my doubts as to how much he really knows or worse how much he cares!!! And yes I think the ammonia was a very big factor.
I was just wondering about the two meds mentioned - my hubs has been on the Exelon patch for three years now. It's supposed to do the same thing that the others mentioned do - it apparently has slowed the progress. The doctor said to keep him on it until it becomes obvious that it's not doing its job any longer. I also asked for something to help with his restlessness - he's on a VERY low dose of an anti-anxiety medication (forgot the name). I think it's helping a little with that issue. I surely didn't want to have him heavily drugged at this point. I'm not a fan of using every medication under the sun - what would be the purpose? Meds aren't going to save him - just enough to make manageable each phase he goes through. Right now I am thankful that he (we!) don't need any more than that. It may change down the road & I think for him it is going to be a looong road - physically he's in pretty good shape!(Not sure if that's a positive or negative).
bak - the question of medication was a hot topic several years ago, but I searched and couldn't find it. When my DH was diagnosed with EOAD, I was one of those that accepted every medication the doctor's threw at me. One day after a year or so on all these meds, I went into the den, DH was sitting on the floor, leaning against the sofa in a stupor. I was horrified, but I knew immediately he was just way over medicated. I immediately made a doctor appt, and I decided to take him off all the anti-depressants and Alzheimer's meds. It had to be done slowly, but was the right thing to do. He had a slight quality of life improvement, and it was worth it. Some of the "old timers" here (she said lovingly) will probably remember my issue with heart medications several years ago. He has a serious heart condition that required surgery and lots of medications. After long, hard thought and many conversations with our boys, we decided to not have surgery (Alz & general anesthesia = bad results) and we took him off his heart meds as well. He has Alzheimer's, and it's terminal. Our feeling is that it may be a blessing for a heart attack to take him so he doesn't suffer with the AD. Well, he's still kicking, in late stage AD now, but I still think it was the right choice. Stick to your guns. You know him best, and any decisions we make come from love. {{{HUGS}}
Diane V--I am with you when you say better to go by way of heart attak or most anything else -rather than this slow killer(alz) that takes us along on one of the worse roads we will ever go down!!!! _Paul is in fairly good health otherwise,and for now he is doing better than he has in over 2 years.
Bak, Sounds like Paul's doctor is very insensitive to your input. You see your DH daily..the doctor only see Paul perhaps every 3 months for 15 minutes? It's important that you feel comfortable and have good repore with the doctor. I would fire him and look for someone who will respect your input. Best wishes
The drugs do not slow the disease one iota. what they do, if they work, will allow them to stay more cognitively functioning longer. The disease still is doing its damage.
From the mayo clinic: Alzheimer's drugs offer one strategy to help manage memory loss, thinking and reasoning problems, and day-to-day function. Unfortunately, Alzheimer's drugs don't work for everyone, and they can't cure the disease or stop its progression. Over time, their effects wear off.
Yes..Charlotte...you are so correct the drug do now slow the disease one iota. It slows the progression of some of the behavior and symptoms and at the same time the condition is worsening and then when the drugs are no longer affective the behavior and symptoms can and probably will take a rapid downhill slide.
My dh was a text book case of AD. He went through the various stages like clock work. He was on Namenda and I do believe that he was an almost perfect example of the drug working as it was advertised. When the drugs didn't work anymore he went down hill fast and flew through stage 6 and barely made it into stage 7. I felt and still do that Namenda was a blessing because I had him for several years where we could still travel, eat out and we enjoyed ourseleves. I would recommend the use of Namenda to anyone on a trial basis.
Unfortunately for my husband the side effects were worse than anything he might have reaped from the drug. But his dad was on it and it seemed to help.
They say if the drugs did work for the, which is less than 50%, when stopped they will quickly go to where they would be if the drug had not been helping with the cognitive skills.
As with the word searches my husband does where he is making new brain cells, eventually the distruction from the disease will go faster than they can make new brains cells and that is when they go sliding down -IMO.
I believe in the clinical trials, Aricept and other similar drugs helped only some of the patients, a small amount, for a relatively short amount of time. Of course, there are always exceptions, but generally that was the result. If you have reservations about giving your husband the drugs Betty, don't let the doctor bully you into doing it. You are the one that has to live with the results and deal with any potential problems.
Keep in mind that 25% of people diagnosed with FTD turn out to have Alz. I don't know the percentages for the reverse. My point is that there are serious problems in making a dementia dx so trying drugs that do not work with a particular dx might be worth trying because the dx is wrong. The fact that my wife had such a bad reaction to the Exalon path reinforces her FTD dx.