Neurologist appointment

Kevcoy

We had our appointment with the neurologist last week.  I took some of your advice and told him we were going to a Medicare well check that we have to start doing every year.  The appointment lasted about two hours and my DH was given the full scope of tests.  He did pretty good on some (name as many animals as you can in 30 seconds).  Then not so well on others (remember five words and drawing a clock).  At the end of the visit he did say that my DH's dementia was indeed Alzheimer's but he didn't say if it could be a combination with any others.  He said he would send me the full report along with what he believes what stage he is in,  

He did offer a medication suggestion which I hadn't heard about which is Namenda.  Have any of your loved ones used this drug?  If so, what do you think about it good or bad?

I'm grateful for the diagnosis even though it wasn't anything I wasn't expecting but now I can move on to the next step.

clndaniels

My DH has been on Namenda for about 4 years along with aricept. Some literature says that they will slow the progression of Alz. Most says it is best for a year. Don’t know how you know if it has done that. Asked the neurologist if it should be stopped after that amount of time and he says to just keep using it in case it does help. Have not seen any significant side effects.

ImMaggieMae

Kevcoy, my DH had been taking Memantine, the generic version of Namenda for at least a couple of years. His PCP originally prescribed 5mg twice a day. He told me it could delay symptoms of Alz/bvFTD. I couldn’t see much difference, but it didn’t seem to have any side effects. My DH was somewhere in stage 6. He needed help with all ADLs and had urinary incontinence and occasional bowel. Then after finally getting an appointment with a neurologist after more than 8 months, he increased the dosage to 10mg in the am and 5mg in the pm back in mid June. Within a week or two I started seeing improvements. The first was empathy. That was one of first things to go with dementia and it started coming back at first just asking if I was alright when I sneezed or coughed, and later expressing concern when his caregiver had to miss a visit because she was sick. A few weeks ago I dropped a container in the pantry and cried out, “Oh no!” when some contents spilled. He came running over to see if I was hurt, asking if I was ok. 

I had been mostly hand feeding him because of some swallowing issues apparently common to the disease. He had lost about 15 pounds and I was adding Ensure type drinks to make sure he was getting enough calories because there were only a few foods he would eat. After increasing the Memantine, he started accepting more foods and eating more on his own. Now, he will eat almost anything that doesn’t irritate his throat, like crackers or popcorn, or foods that are too dry. He gained back the 15 pounds he lost and an additional 3. 

Much of the incontinence had stopped during the day and sometimes at night. The bowl incontinence has disappeared altogether. He was unable to dress himself before the increase in the med but can now dress himself if I lay out his clothes. If I don’t, he is likely to put on multiple layers or mismatching socks. I still have to get in the shower with him, but he is much more agreeable to showers every other day.

The only downside is that the increased dose makes him sleepy, one of the drug’s listed side effects, mainly in the morning and later at night when watching TV. He will rest his chin on his chest and fall asleep for 5 to 10 minutes. He does this multiple times throughout the morning if he isn’t engaged in doing something other than watching tv. The neurologist wanted to increase the dosage to 10mg twice per day to a total of 20mg daily after a month, but agreed with me to hold off due to the drowsiness. When I finally increased it a week or so ago, it didn’t seem to increase the drowsiness. I was able to decrease his Risperidone early on due to the drowsiness. 

I think the drowsiness is worth the trade off in empathy and mental clarity. He always calls me by my name now where he previously knew I was his wife and caregiver, but often couldn’t recall my name. Prior to the increase in the Memantine he could write 3 letter and sometimes 4 letter words. Last week when  a friend asked me if he could verbally spell words, I stated asking him to spell increasing longer words. He was able to spell and write words like television, bookcase, incredible, and meaningful. He can count backwards from 100 with only a couple corrections or prompts, where he could only count backwards from 20 prior.

I know these improvements won’t last forever, but I hope things stay like this for a very long time. Kevcoy, I hope you have similar results. 

Joydean

Kevcoy, my dh has been on memantine for several years. He too started out with 5mg. And was increased to adding 5mg at bedtime, then to 10mg am and 10mg at bedtime. I could definitely see improvement. Not as wonderful as MaggieMae, but still any improvement is so very much appreciated. A funny thing about empathy for my dh, before he could not even notice if I was sick, but now he will tell me he hopes I feel better because “you’re the one that takes care of me “! At least he can now recognize that I am taking care of him! 

Wishing good luck to you and your dh. 

ImMaggieMae

I should mention that when my DH’s PCP started him on the Memantine it was 5mg per day, then increasing to 10mg where he stayed until his neurologist increased to his current dosage.

Newground

Kevcoy, how many visits did you have with neologist before getting an official diagnosis?

Newground

Kevcoy, how many visits did you have with the neurologist before you received an official diagnosis?

Ed1937

When my wife was diagnosed, the doctor wanted to give her some medications "for memory". She refused, and refused probably 4 or 5 other times when other doctors wanted to give it to her. She never took any medications related to dementia.

Most of the time when I see people discussing this, they say they don't really know if it helps or not, but it's not hurting anything, so they continue to use it. I think most will say that if it does help, it only helps for a limited amount of time.

Jeff86

My DW has been on Namenda and Aricept since dx almost six years ago.  In truth, I’ll never know if they helped slow progression—can’t know if she would have progressed faster without them.   Only observable side effect is a runny nose.

All of DW’s doctors have recommended against stopping the drugs, as they uniformly have said their clinical experience is a lower baseline upon discontinuance.

YMMV

Laurie1282

My HWA just added Namenda two weeks ago with a very small dose, starting with 5 mg a day and is now at 10 mg a day.  He has been complaining about more nausea, weakness and dizziness the last few days. I'm hoping as his body gets used to the drug, these symptoms will decrease.  Does anyone have any experience or advice?