Can Someone Really Get Better?

LorettaP

I am wondering could the meds really be helping this much? DH has been on Aricept (10mgs) and Mamentine (28mgs) and got better as soon as he started taking them. Memamtine has been increased in dosage from 7mg to 28mgs, but he was good at 7mgs. I don’t manage his meds, he functions independently as well.  How can someone go from not knowing who I am for days, severe hallucinations, etc., to almost normal? There are still memory issues however… I don’t want to paint an incorrect picture. Even the neurologist was surprised and encouraged him to get evaluated by an occupational therapist to get his drivers license back. Should I keep waiting for him to decline???  I don’t understand! Should I take advantage and plan some vacations? I am somewhat confused. Any input would be appreciated.

Iris L.

After years of being on the memory meds and after further testing, my neurologist determined that I do not have Alzheimer's Disease.  But my initial diagnosis included "not otherwise specified."  I did not have hallucinations nor did I forget people close to me.  

I believe the memory meds can improve cognitive function in some people.  But if they truly have Alzheimer's Disease, the brain damage is not repaired by the meds.  

In your case, my suggestion would be to take advantage of the reprieve you have and attempt travel.  Follow Best Practices.  Keep in mind that AD is unpredictable in many ways.  Best wishes to you both! 

 Iris L.

JJAz

You mentioned 3 things that suggest Lewy Body Dementia.  Check it out

• Fluctuating cognition
• Hallucinations early in the disease
• Significant improvement from Aricept

Crushed

If a person has Alzheimer's  there are symptoms (what we can see) and underlying pathology (what we can't see)  lots of things can improve symptoms temporarily. 
Nothing we know of changes the pathology

That is why Alzheimer's is QUACK heaven.   

Non Alzheimers dementia has different patterns

Pam BH

My DH has been on memantine 10mg for 4 months and it did decrease his anxiety. He still had ongoing delusions, etc., but they didn't cause agitation or chaos.  I'm now seeing that it's losing its effectiveness. I knew going in taking the medication would only give us a short reprieve for which I'm very grateful to have time to regroup from all the stress, educate myself, and be more confident in my approach to different situations. Will make a decision soon whether to increase memantine, sertraline, or add Aricept.  Sounds like your DH had very positive results and I hope your situation will be long lasting and give you a chance to do the things you both enjoy.

lqadams

I agree with JJAz.  What you are describing sounds like my husband's early stage Lewy Body Dementia.

Kenzie56

Even though the symptoms are improving, the brain cells are still dying. My DH has been on Aricept and Memantine for about 18 months. Like your DH, he did not recognize me, was disoriented and anxious prior to the meds. Enjoy the period of "having him back" as the medications only help for awhile (length of time is different for each patient) because as the disease progresses the meds can't keep up. My DH is back to not recognizing me from time to time and his memory and communication skills are much worse. Unfortunately the time his symptoms were better, the country was in lock-down and we couldn't take advantage of getting out. Take advantage of this period of time with your DH!

Stuck in the middle

That's great news!  My advice is this:  Plan the vacations, prepare for decline in the future.

Have as much fun as you can.  Life is finite, for people with AD and those without.  Eat those steaks while you still have teeth!

My wife takes Memantine and Aricept.  I believe it improves function because it did so for test subjects in clinical trials.  I can't say for certain that it helps her, because she hasn't missed a dose in five years, and I see no reason to stop it to find out.

Despite medications, my wife is slowly "losing her marbles" as she puts it.  She can't even start the car that she bought in 2012 and drove daily for years until the onset of her illness.  This is the time to see an elder law attorney and obtain financial and medical powers of attorney.  As time goes on, you will become the one functional adult in the household and will need the ability to control the money, the medications, etc. 

We drove down to Savannah, Georgia a few years ago, during a music festival.  We sat on Forrest Gump's park bench, ate at Paula Dean's restaurant, walked in the Garden of Good and Evil, and heard some good music.  We toured some old houses, and I made a fool of myself playing the role of a newspaper reporter in a dinner theater.  She has no memory of the trip at all.  But we had a good time while it happened, and I remember it.  

LorettaP

JJAz wrote:

You mentioned 3 things that suggest Lewy Body Dementia.  Check it out

• Fluctuating cognition
• Hallucinations early in the disease
• Significant improvement from Aricept

I talked to the neurologist about Lewy Body and he said he didn’t think that was what it was because he doesn’t have any issues with his gait or walking? Neurologist said that’s the most common symptom he sees for LB? But I felt the same way after researching Lewy Body, he has several symptoms. And it happened all of a sudden. One day several months ago he asked me who I was. I thought he was kidding. 

JJAz

LorettaP wrote:

I talked to the neurologist about Lewy Body and he said he didn’t think that was what it was because he doesn’t have any issues with his gait or walking? Neurologist said that’s the most common symptom he sees for LB? But I felt the same way after researching Lewy Body, he has several symptoms. And it happened all of a sudden. One day several months ago he asked me who I was. I thought he was kidding. 

My husband didn't have gait issues or any other parkinsonisms until later in this disease.  The diagnosis criteria requires that so many symptoms be in place before a diagnosis.  As a result, many patients only meet the 'Lewy Body Possible' or 'Lewy Body Probable' criteria, and their diagnosis is made post-mortem. 

Also, more than half of Lewy patients also have Alzheimer's too (also true for my husband - and confirmed after death).  The concern about Lewy is really, really important because there so many day-to-day medication that can cause severe problems for Lewy patients.  For example, my DH went into a tail-spin after taking Dimetap cold medicine for three days.  He never recovered his previous cognition level, became incontinent and lost significant speech after 3 days.  It was horrible.

Gthoma

My DW has been on memantine and donepezil (ariceptl

) for 9 months. It helped significantly. Reduced anxiety and delusions. However, as her neurologist cautioned, the benefits are temporary and just delay the progression. Sometimes I think half the benefit is just slowing the roller coaster down enough that the family can catch our breath and adjust to the new future. We're now at the max dosage and continuing the rx while we see the disease take a little bit more every day. Best wishes and good luck to you.  

storycrafter

In our case, too, the meds made almost an immediate huge improvement and continue to give quality of life despite dh's slow decline.

It IS confusing and can cause a caregiver to question their own sanity. Thus the priceless value of a support group such as this! Thank you all for being here.

CStrope

My question is this......so on the rare occasion that my DH forgets to take his pills, is his ability to function or actually not function a window into what he would be like if he never took the medications?  I arrange his pills, have alarms set, but there have been a few times when he has gotten distracted while in the process of getting his pills and he has missed a dose. It is always very noticeable later on that he didn't take them.  So is part of the major difference because his body is so used to having the medication in his system, or is it really just that the medication helps that much.

Crushed

CStrope wrote:

My question is this......so on the rare occasion that my DH forgets to take his pills, is his ability to function or actually not function a window into what he would be like if he never took the medications?  I arrange his pills, have alarms set, but there have been a few times when he has gotten distracted while in the process of getting his pills and he has missed a dose. It is always very noticeable later on that he didn't take them.  So is part of the major difference because his body is so used to having the medication in his system, or is it really just that the medication helps that much.

could be neither . what pills?  For example mamantine

  Memantine is excreted predominantly (about 48%) unchanged in urine and has a terminal elimination half-life of about 60-80 hours.

 So the body maintains a steady level with daily pills  it wouls take several days for the level to drop. about half the drug is unused. 
 
The elimination half life of donepezil is about 70 hours......Following multiple dose administration, donepezil accumulates in plasma by 4-7 fold and steady state is reached within 15 days.

Good analogy is a slow leak from a tire. lets say 3 psi per day.  You put in air every day , but if you miss a day its no big deal  

 There are other medications where timing  is much more critical
  

CStrope

It would be Memantine and Aricept.

Lane Simonian

The short answer is yes; the long answer is much more complicated.

The usual contrast is between treating symptoms and treating underlying causes.  A much rarer view is threefold: treating initial or secondary triggers, checking points that lead to the underlying causes, and treating the underlying causes themselves.  I don't like analogies but this is a pretty good one:

Dr Carrasco and his team think a clinical trial of anti-fungal drugs is the next logical step. But there is yet another possibility. In the absence of a definitive ultimate cause, it may be that the symptoms of Alzheimer’s disease can arise from many different types of insult to the brain. There have been several papers, says Dr Le Guillou, that have found correlations between various infectious organisms and Alzheimer’s. “It could be a bit like the Mississippi river,” says Dr Hardy. “You can start in all sorts of places, but eventually you’re going to end up in New Orleans.” If Alzheimer’s is a general response to all sorts of neurological triggers then it may be that the fungal infections found by Dr Carrasco are simply one of a long list of causes.

If you divert all the initial tributaries, you dry up the river, but in medicine like in geography that is nearly impossible to do.   Moreover, for Alzheimer's disease, almost all the focus is on secondary triggers: misfolded amyloid proteins, misfolded tau proteins, and neuroinflammation.  Treating secondary triggers does little to stop the progression of the disease.

Aricept and memantine are like diversion dams.  They inhibit processes that lead to the underlying causes of the disease.  They can do some good for awhile, and prolonged withdrawal can speed the progression of the disease for awhile, but for most forms of dementia and in most people they do not alter the course of the dementia over the long term.

What then is the underlying cause of most dementias. It is this:

Collectively, these findings imply that alpha-synuclein is nitrated in pathological lesions. The widespread presence of nitrated alpha-synuclein in diverse intracellular inclusions suggests that oxidation/ nitration is involved in the onset and/or progression of neurodegenerative diseases [Lewy-body diseases].

https://ajp.amjpathol.org/article/S0002-9440(10)64781-5/pdf

These findings provide strong evidence that peroxynitrite is involved in oxidative damage of Alzheimer’s disease. Moreover, the widespread occurrence of nitrotyrosine in neurons suggests that oxidative damage is not restricted to long-lived polymers such as NFTs, [neurofibrillary tangles] but instead reflects a generalized oxidative stress that is important in disease pathogenesis.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6573097/

Certain plant compounds found in (but not limited) to panax ginseng and in some essential oils (via direct inhalation aromatherapy) not only inhibit oxidation and nitration, they partially reverse the damage that oxidation and nitration does to the brain.  They produce short-term improvements in certain forms of memory that are largely maintained over long periods of time.  The best confirmation of this for panax ginseng/Korean red ginseng (despite the limitations of the study) is the following:

A 24-week randomized open-label study with Korean red ginseng (KRG) showed cognitive benefits in patients with Alzheimer’s disease. To further determine long-term effect of KRG, the subjects were recruited to be followed up to 2 yr. Cognitive function was evaluated every 12 wk using the Alzheimer’s Disease Assessment Scale (ADAS) and the Korean version of the Mini Mental Status Examination (K-MMSE) with the maintaining dose of 4.5 g or 9.0 g KRG per d. At 24 wk, there had been a significant improvement in KRG-treated groups. In the long-term evaluation of the efficacy of KRG after 24 wk, the improved MMSE score remained without significant decline at the 48th and 96th wk. ADAS-cog showed similar findings. Maximum improvement was found around week 24. In conclusion, the effect of KRG on cognitive functions was sustained for 2 yr follow-up, indicating feasible efficacies of long-term follow-up for Alzheimer’s disease.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3659550/

Various neurological conditions and diseases share similar underlying causes.  Treat these underlying causes and you partially treat the disease.