Hi all. DH has been in a vaccine trial for over a month. He's had 2 injections so far. I don't really see improvement. In fact, he seems to be getting worse to me. Dressing himself has become very difficult. He has a hard time understanding that he has to remove clothes before putting on other ones. Last night really scared me. He was being very lovey dovey, talking about wanting to be with me, not that that's new, but he actually said we could have babies, which really threw me. I had to remind him that we have kids and aren't having any more. (something I know he feels as strongly about as I do.) It was like he thought we were just starting out together or something. I wonder if this is a new phase where he forgets significant things about his current life. The disease seems to be progressing pretty rapidly over the last few months. Do those of you whose LO's have been in vaccine trials have experience with them getting worse, then improving, or should improvement happen pretty quickly if it's going to?
Mine is in the Merck trial, and he got his first dose (of whatever it turned out to be) last month. I have not seen any notable changes. He gets dose #2 in another month.
I don't know about trials, but as AD advances the patient goes back in time. My husband asked me to marry him and was so excited when I said yes. He then told me how he would seduce me afte we were married--too late, he'd done that already. But acting like a teen-ager is quite common. Sexual advances are common, especially in men, and many women have made advances to their male docs, or said they were going to marry Paul Newman-- youthful activities. He won't understand your explanations. In asmuch as possible, try to go into his reality for the moment. It's hard because they go in and out of various times in their lives, keeps you off balance.
Keep in mind that your husband may not be getting the real drug. He may be on the placebo.
I know two people who are in the same drug trial. They were both going downhill quickly. About 4 months after being in the trial, C. improved so drastically, he is doing most of what he did before his disease advanced. J. has continued to go downhill. She may be on the placebo, or if she is on the drug, it may not be affecting her in the same way as C. There are so many variables.
However, I would definitely tell the doctor about your husband's decline.
Kelly, my DH got worse on every Alzheimer's drug he tried. And he wasn't on a trial (placebo). Makes me wonder if there are diseases we call Alzheimer's-type that are something quite different.
It looks like my DH has advanced again, I truely believe he enterd stage 6, if you go by stages. He was diagnosed one year ago and it all happens so quickly. He rarely knows who I am and he ussually addresses me as Dona Anna. I may get some respite care from the VA. I'm his only caregiver and I'm 67 years old, in pretty decend health, but this 24/7 is catching up with me. If they don't come through then I will have to pay out of pocket, but I need the brake. Wish me luck with the VA. They are supposed to send someone to the house for an evaluation, so we see how it goes. Of course they might take their time till they come.
I wish you the best of luck. When you deal with the VA, it is best to hook up with one person who knows the ropes inside and out. Stick with that person and keep calling. We have a great liaison in this area, and she has helped so many people in our support group get the benefits they deserve.
Yes Joan I'm going to keep at them, it took me 10 months to get him back into the VA system. He deserves every bit of help from them. He was in the Airborne for 20 years and in Vietnam twice. I finaly got him a 10% service connected disabilty, that was what I needed to get him back into the system. I just can't believe how fast he advances in his AD. This is so hard, we been married 48 years, and as to the marriage vow, for better or for worse, (this is the "worse") this is one desease I would not wish on my worst enemy. Sometimes I wonder why God would put this on our LO's and ourselves. But he must have a reason. Thanks Joan for your encouragement.
If the "drug" is a "vaccine", then it is something that has to induce a reaction in your DH's immune system. That's a very different type of drug than one which interacts directly with a biomolecule associated with AD symptoms (e.g., aricept binds to the enzyme cholinesterase and slows its activity.) So it could indeed take quite some time for you to see any sort of reaction. joang said she knows of one person who took four months to have a positive reaction. Your DH just had the second injection, right?