Neurologist’s visit

ImMaggieMae

My husband had a follow up Neurologist visit yesterday. His last one was at the beginning of July when they had noticed some improvements over the previous visit which we had attributed to an increased dosage of Memantine which he had been taking for about 2 years, 5mg in the morning and 5 at night. They had added an additional 5mg to the morning dose in mid June. The improvements noticed at the last visit (and by me at home) was a return of empathy which he hadn’t shown for over a year, and he did better at some of the cognitive tests. 

They confirmed the greater improvements we had been seeing at home and said he is doing a lot better than at his previous appointment. At the beginning of this year he was able to spell 3 letter words but it was hit and miss on 4 or 5 letter words. He is now able to spell words like television, bookcase, charismatic, phonograph and knows the difference between click and clique when asked to spell them. He is able to dress himself if I put out clothes. Before he couldn’t. If I don’t put clothes out he might put a pair of shorts over pajama bottoms or unmatched socks. The bowel incontinence has disappeared and the urinary incontinence greatly decreased to mainly at night or late at night when we’re watching movies. He is eating a much larger variety of foods although he still has some trouble swallowing. He can eat by himself but at dinner asks me to help feed him. He gained back all of the weight he lost early in the year. He always remembers my name now and when I handed him the phone the other day, telling him the person’s first and last name, he addressed him by his nickname.

He can count backwards from 100 where it was only from 20 before. The things that haven’t improved are being able to recall 4 words several minutes after the NP had had given them. He also didn’t know the date or day of the week, although we rarely talk about dates at home and our routines are the same regardless of the day. 

When we pulled into the parking garage at the office, I started turning into the wrong lane for the valet parking. He pointed out that I was going the wrong way, to turn around. He never would have been able to do this a few months ago.

The drawback of the increased Memantine is that it makes him drowsy in the morning and he will regularly nod off for 5 or 10 minutes. The NP said that isn’t a common side effect but can happen. She agreed that the trade off was probably worth it. I know these improvements won’t last, but it’s been over 4 months and we’re still seeing improvement. At the beginning of the year things seemed so awful. But medications, Risperidone and Memantine, have helped.

About a week ago he had a UTI. Almost all of these improvements went back to square one except the empathy. That remained. I was afraid his improvements wouldn’t return. But a few days after finishing the antibiotic, he is back to where he was. I sure hope this lasts a very long time.

Dio

That's wonderful!! Hope this will last for a long while. We're still plagued with Jekyll/Hyde days. I wish the Hyde days would disappear. I can handle the Jekyll days and keep up with the 24/7 caregiving easily. The Hyde days can be so bad that I just want to crawl into a hole.

Ed1937

I remember when you posted about that before. That is *really* great news! I hope it lasts too.

storycrafter

Wow, big differences you've seen. I know they make a difference in how your relationship feels. I hope it lasts a while. My husband has also had a return of some empathy and is better in some ways. I wonder sometimes if a brain with more cognitive reserve can perhaps find/develop new pathways in some cases.

Joydean

Maggie May, great news I hope it continues for a long time.  I too remember when you had posted about the change. I had stated that my dh’s doctors had increased his also and it was great. Sadly my dh has not done so well. He is progressing and can do very little at this time. He’s also starting to be angry, not at me or towards me, and told me today he doesn’t understand why he can’t just die. He said “my friend died why can’t I?”  This friend died 4 years ago. 

I am so very happy for you and your dh. Prayers that it will keep on.  

Scooterr

Good news is always great news on the forum, I know it's been rough getting through the UTI and everything that goes with. Your doing a GREAT job ImMaggieMae!

Hoot619

I'm so happy for both of you. May it continue for a long long time. There aren't to many stories that cheer us up on here but yours sure do!!

Just Bill

It's a pretty big difference between what we would call a good day before diagnosis and after. Days DW is difficult and unmanageable is a bad day. Days DW is pleasant and manageable is a good day. It really makes you appreciate the moment when you are having good days, and when the bad days come you know it is only temporary. A brain shift or medication adjustment and we are back to good days. Bad days make us more resilient and in personal growth mode. The upside to the bad days is you get really over appreciative of the good days. It has conditioned me to really live in the moment, it is normal to wonder when is the other shoe going to drop but I'll worry about that then, not now. If it's a good day savor it put your brain on record for the memory. When the bad days come, emotionally batten down the hatches and ride out the storm. It will pass.

toolbeltexpert

ImMaggieMae that is fantastic, getting improvements and not just slowing it down is almost unbelievable, I really hope this lasts for a long time. 

Praise the Lord.

Stewart

ImMaggieMae

Stewart, we are seeing improvements, but it is the medications that are causing the improvements. Maybe, like storycrafter said, it is just opening up different pathways in the brain or something. But it really is just a slowing down of the symptoms. I would like to believe that things will get still  better, but ultimately we all know they will not. I think the best I can hope for is that they stay this way for a long time and that there are other meds or combinations of meds that can be tried when these lose their effectiveness. Having good doctors who will listen is a big part. It took a long time. 

Like Bill said, a good day post diagnosis is a lot different than a day pre diagnosis. My DH still has dementia, he is just functioning better right now. 

I hope my post will encourage others who have had success with medications or other treatments will post them here so that maybe we can all benefit.

Ed1937

ImMaggieMae wrote

I hope my post will encourage others who have had success with medications or other treatments will post them here so that maybe we can all benefit.

Let's hope so. I've read thousands of posts here, and never saw one that came close to what you're experiencing. Most people say they don't know if the meds are helping or not. It would be great to find a combination that really works for a lot of people. 

 

ImMaggieMae

Ed, the med that seems to be making the big difference, Memantine, is one that he had been taking at a lower dose and I never knew if it was helping or not either. It was only with the increase that I saw the changes. 

I wonder if people are just more inclined to post when things are going badly or they need help with something?  Or maybe they are hesitant to post good news? I know I was. Most of the posts here seem to be from new people asking advice on dealing with a newly diagnosed LO and financial advice. The others seem to be questions on finding placement or dealing with problems after placement. As far as I can tell there are only a few people here who are caregiving at home for someone in the later stages and it seems like taking care of a loved one at home is actively discouraged. 

Ed1937

ImMaggieMae wrote:

it seems like taking care of a loved one at home is actively discouraged. 

I think what's happening here is that we're all looking out for one another, knowing what's in store for people when they are fighting to keep their LO at home when they clearly are at the end of their rope themselves. And their LO is not going to get better. At least that's the way I see it.

 It wasn't long ago when I had a thread about wanting to help other caregivers by watching their LOs so they could get a break. Several people tried to discourage me from doing that for various reasons, while others thought it was a good idea. Those who tried to discourage me only did that because they were looking out for me. There were potential pitfalls to consider.

M1

Maggie, more power to you--I don't think you should ever feel hesitant to post good news, regardless.  Part of it may be that dramatic responses like your husband has had are so rare, but hey--nice to see it documented.  The figures I always quote (I sound like a broken record):  one in twelve will benefit, one in twelve will have a bad side effect, and ten of twelve will. have equivocal results.  No reason though not to be glad that he has responded so well.