I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog about my husband's possible improvements in functioning, and post your comments here.
Joan, the only improvement I've seen is lack of getting worse. But although I'm usually an optimist, I really wouldn't count on improvements lasting for any length of time. We are better off, just enjoying the respite, and not counting on it. MY DH was at his worst when he was on painkillers after surgery. that gave me a taste of how bad it can get. So now he's not on painkillers and he has been stable. But I know what is coming. I saw that happen several years ago when he was on Pain killers before, and I thought, oh, I couldn't live with it if he stayed like this... and now he's worse than he was then, so to me it's a precurser to what's coming. Enjoy what you have right now, but don't count on it lasing, you'll just be disappointed, or worse. Take a trip with him, do something you haven't been able to do, but don't count on it lasting, it won't.
After Nemenda was added to my husband's mix of drugs, and he got to the full dose, there was an improvement in several areas. Although he has declined in other areas since last November, some of the things that improved have not declined at this moment.
Is it possible that one or the combo of both of his new drugs is creating an improvement? Oh, yes. It is very possible although there is no way to know which one or if it is the combo at this point.
Will it last? Because one of the drugs is a new drug, there is no way to know that. Chris gave you good advice. Enjoy it while it lasts. If improvements begin to build as he gets additional drugs on top of a much calmer and less stressed emotional pressure, count your blessings.
You are in a drug trial because there is the possibility that a miracle is right over the horizon. It could happen. Having hope is OK.
My husband is in the same trial as Sid. He claims that his head is clearer in the morning when he wakes up. A month after his first infusion he was able remember the date and the day of the week, something he hasn't been able to do for several years. Now it's like a game - every morning he asks me what the date is. I often give him the wrong answer just to test him :-). I enjoy having him correct me!
For the record I have talked to someone else whose spouse is in the open label and they have stabalized. I'm so glad to hear Sid is doing well.
When my husband was on the psych ward last year, he was medicated down to a wheelchair and like a zombie most of the time. It was awful.
When I moved him to the facility he is in now, they took him off and/or lowered a lot of the drugs so he was able to get up and walk again, talk, recognize me and hug and kiss me. That was a wonderful respite and I treasured it. It also showed me how he will be some day.
He is now progressing again to being a lot more sedentary, tripping when he walks and I can no longer count on his responding to me when I go see him.
Joan - it is a gift you are being given to be able to enjoy your husband for a while.
Joan - I am so glad you and Sid are notice improvements. Enjoy the "up time". Wouldn't it be wonderful if the infusion causes a breakthrough.
Right now we have been enjoying "up time" for the past 2 weeks. He has improved talking, formulating sentences, staying awake days. It kind of "throws you". I was adjusting to the situation and then improvements. I am almost afraid to mention the improvements because I am afraid the "other shoe will drop" and we will begin the downhill slide. In DH case it could be reducing some meds or getting over the death of my Mother 4 months ago. I tend to think it is reducing the Neurotin and Nortese Forte muscle relaxant. When someone asked him how he was this morning, he told them he has been feeling better the last 2 weeks. He does still have the Parkenson and spinal stenosis problems and I am worried they will have him in a wheelchair this winter.
My husband had his first infusion in July. There have been times that he has remembered something and I am so wanting to attribute that to the infusion. One day listening to the radio we heard some music that I thought was by a rival of Mozart's but I couldn't think of his name. A little while later they mentioned it and I said, that's it it's Salieri. A minute later I couldn't recall the name and my husband came up with it! We both had a good laugh. He loves it when I forget something! I have a feeling he didn't score any better on the MMSE six weeks after the infusion. Part of the reason for that is his nervousness whenever we are at the doctor's. Hopefully that will change as we see the research assistants more frequently. He really likes the one and even remembered her name last time and it's not an easy one. I was told we should see more improvement after the second infusion if he is indeed getting the vaccine. I keep hoping.
My DH had a dramatic improvement after starting Aricept and Namenda. He is almost normal most days, just forgets things and can't keep the days of the week straight. He says it's because he's not working and doesn't have to date papers, etc. anymore. We still have meaningful conversations and he still helps make decisions. Occasionally, though, he has days when he seems not "with it" as much so I'm also waiting for the other shoe to drop.
He does not do well and gets confused when we travel so we've not taken any trips in the last 9 months. He is so much better in familiar surroundings and in a regular routine. I really miss traveling but would rather do things near home and see him function better.
Bluedaze, gosh how I wish that were true....that dementia isn't a terminal disease after all. We all know better, don't we?
Handling Improvements: Thankful when they occur...so so thankful. Today was a better day for my husb who has been battling not only Alzheimer's, but kidney stones & UTI. He was with his caregiver today (9am-4pm) and I was able to get out & go to a Kalidescope of Homes (home show)...the day was sunny & in the mid-70's...a glorious beautiful day...inside & out!! We are blessed & are to be counted in with those who continue to have hope for a cure...
We are long past the days where there were ups and downs... they are all down days. I am now thankful if it is a peaceful day for Lynn.
Back in the day, when he was in the earlier stages.. when he still had ups and downs... To answer you question Joan, I would LIKE to say I treasured the ups! But, the truth is - I was too worried about when the down would come that I never was able to enjoy it for long. Sad, now looking back on it.
So, my best advice to you.. is to try to enjoy the time you have now. Treasure each "up" moment and make it a memory for you to hold onto later.
I too am so happy to hear so many of your loved ones are doing well on the new medications.......... holding out hope!
We really haven't seen any improvements with any of the medications we've tried,even though we got the diagnosis early and started right out on medication. I, too, wait for the next skill that is lost or the next sign the disease is progressing onward. But then I think, maybe it would have gone so much faster without any treatment...who knows? However, I live my life watching my DH and wondering what is going on in his head and hoping we can get through the next challenge. It's such a cruel disease!
Hope is such a two-edged sword. During the whole progress of the disease there were times when the clouds seemed to clear away for just a moment, and my husband would say or do something that was just like the man he used to be. Then the clouds would sail in again, thicker than ever.... I don't think there ever was an "improvement." It was that for a short length of time the circuits in his brain hooked up again - who knows why.
My LO is in the early stages of AD and is very high functioning. He was an absolute monster for the first year and a half - a man I didn't know and was afraid of what would come next. He has been under a psychiatrist care for over 10 years and his depressions had been well managed. I didn't know if the bad moods and ugly behavior was AD, or psych related, reaction to new meds or adjusting to the new diagnosis - and probably a combination of all three. He was put on Namenda several months ago and they changed his antidepressant to Lexapro. I didn't think it would make any difference as he seemed so entrenched in that behavior. I am happy to report I have my sweet husband back - for a while - and I will take it. I was nervous at first thinking he was putting on because he can be very cunning and then vicious when he wants to be. But it seems to be for real. He is more relaxed overall, much fewer outbursts and not as severe. So for now, we are doing well - and I question myself wondering "Does he really have any disorder, or is it my imagination". The Neruo tests and MRI and Petscans say confirm that he does have AD, but it just doesn't seem real now that he is in such a better mood. AD is a very cunning and vicious disease as well. Trips me up when I least expect it.
So happy and relieved to see many of your loved ones profiting from the Alz meds and trial meds! its always a plus to have these extra times to enjoy their abilities and skills and the excitement that new drugs may be of such benefit- even better is that there may be the cure on the horizon-divvi
My husband has been on namenda, arecept and wellbutrin for 4 years. Plus some others on and off. Just recently I changed his muscle relaxant and eleminated 2 of the neurotin and there has been a dramatic improvement in his behavior. He has made jokes, talked and laughed more, whisled and even hummed. It has been 2 weeks and I know what you mean about questioning your own sanity that he has AD. In the spring he scored 18 on the MM test.
I hear each one of you. I cannot believe that my DH will talk freely about his ulcerative colitis, his heart disease but will not discuss his AD. There are times when I question the diagnosis and to be honest, it is hearing from everyone at this sight who see the same behaviors that keeps me grounded. It is so hard not to talk with him and discuss our worries or fears as we do with other illnesses. I think, it would be so much better if only he would talk about it, but I know it is the disease itself that does not allow that conversation to happen. It is such a cruel disease..frustration and resentment and the anxiety of waiting for the next symptoms is now a daily part of our lives and interfers with us enjoying the time we do have together before things get worse..it is not fair!
sandy D are you still in practice? For your husband to discuss his dementia would be admitting to be dying-very hard to do. Unfortunately all the planning will fall on your shoulders. We will be with you every step of the way. Nora
I have a full practice and am sole owner of a practice that has 7 providers and 30 employees. I work about 60-70 hours per week and love my job. It is so difficult to keep him as independent as possible and focus on his needs as well as keep the office running as it should. I know I have to give somewhere, but if I were to quit working, I would go insane. I am working on how to solve that problem.
sandy D - My DH mentions about his memory when I criticize him about not remembering something but he doesn't discuss it and neither do I. I agree, I think it would be better to talk about it. He doesn't question med changes, Dr. appointments etc. Before the AD he did not even take a tylenol.
It seems most people do not want to think about dying. Most people do not buy a cemetary plot, plan funerals before the fact. My husband was not interested in preplanning our funerals, so I did so by myself. He did go with me to choose a cemetary plot, several years ago.
I had a cousin age 45 dying of breast cancer. She told me she wanted to talk about things with DR but he would not and yet she needed to do so.
When my husband was regaling our neighbor with his fantasies yesterday, I noticed he was saying, well, you know, I have holes in my head. That's the way he thinks of the AD: holes. And no shame or embarrassment about that or about anything else, like his Depends, or his inability to walk without the walker. NO frustration about that, that I can see. But also no awareness that he's making things up, or embarrassment if he's confronted!
We have had a couple of really good weeks. No anger or outbursts. No depressive type talk. I can tell that he is trying really hard to be good. He asked me on Sunday if he had given me a good weekend that he tried really had to. I talk with him on the cell phone at least two times a day when he is working out of town. Monday and Tuesday morning he sounded really good and positive. He let me talk about the happenings here in town and didn't get agitated with the talk like he usually does. Tuesday afternoon his uncle passed away. Although they were not close they were family. He didn't seem to be hit hard by it. I was able to get a message through a local friend to him at the job site on Tuesday afternoon. Now we have the depressive talk, no one loves him, he thinks I should get a new man who is happy and fun. Back to the same old stuff. Now I get to dread a bad weekend. The improvements are nice but it gives us a false sense of calm. I don't know which is worse. Just when you get feeling a little calm, then something happens to change it.
I was just at a local support group at the clinic where they administer trials. There was a man there whose wife was in the BAP trial. He is big and aggressive - a former cop - very much on the edge, I would say, poor man, very worried about his wife but says she has been doing SO WELL since the infusion.. that he has to have hope that she's going to be okay now, he can't live without hope, etc.
And I sit there sourly thinking, well, you may have to, my friend... but enjoy it while it lasts. I'm not going to pop his balloon.
This guy says he loves to fight. Loved war, was totally immersed in it (I would guess Korean), became a cop, loved the job, loves to fight. His wife always fought with him but I gather in a way they both enjoyed. And then she got really combative and nasty. Now she's back to being her old self again. I don't know, I'd never seen him before, and he was one of a group. Maybe she's now become docile and compliant and he likes that! I don't know.
We are still enjoying the improvement he has now had for a month. If it wasn't for his spinal stenosis, we could even try a cruise....maybe.... The last 3 evenings he has taken his own shower..I hope he rinsed off the soap......but I still had to help him put his clothes on. He didn't complain today when I went to town for four hours and left him with a friend at the house. But she said he slept most of the time I was gone. It must be the aricept and or the namenda making him want to sleep most of the time.