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Medications/Slow Progressive Dementia
MaggieH
Posted: Saturday, January 28, 2012 10:30 AM
Joined: 1/28/2012
Posts: 3


I have been a member here for awhile, but this new website is driving me crazy.  I thought the older one was easy, and I enoyed it.  In fact, I learned more here thand from doctors, nurses, literature, etc.

 

My husband is stage 7.  He was diagnosed in 2000, but there were signs years before.  The Hospice nurse has taken all his medications for dementia away.  He is now saying some words/phrases.  He has not been able to talk in a couple of years.  Now without the medicine, he is able to say phrases.  Some do not seem to be the appropriate answers, but some do.  It has me baffled.  Also, his disease has been so slow progressing.  Do any of you have an insight to this? 


Iris L.
Posted: Saturday, January 28, 2012 2:02 PM
Joined: 12/15/2011
Posts: 16187


Maggie, welcome back to our group.  Some medications or combinations of medications may cause decline in brain function which reverses when those medications are discontinued.  Perhaps that is what happened in your husband's case.   

 

Alzheimer's is a slowly progressing disease with many twists and changes.  Others may have better information for you. 

 

Iris L. 


jfkoc
Posted: Saturday, January 28, 2012 2:05 PM
Joined: 12/4/2011
Posts: 17529


My husband (disclaimer: not diagnosed with ALZ but MCI) improved when taken off Ariceipt and the Namenda.
Marjk
Posted: Saturday, January 28, 2012 2:05 PM
Joined: 11/29/2011
Posts: 799


I wish I had something to offer you other than hugs, but I don't.  This disease has always been so baffling to me.

 

It is possible that ONE of the medications he was on was causing speech side effects, but this is a guess.

 

About the new site, it's weird at first.  I have actually gotten quite used to it already and am beginning to really like it.  There are still some kinks that I am sure will be worked out in time, but for the most part I have adjusted.  Give this site a little time and practice a little, you'll get used to it.  Trust me, I shed a few tears over this new site in the beginning - as I'm sure others did as well.


baydey
Posted: Saturday, January 28, 2012 2:27 PM
Joined: 1/21/2012
Posts: 43


My mom takes seroquel which I think causes some additional confusion and some drowsiness but without it, she becomes very agitated and has temper tantrums that are frightening. She could not tolerate the Aricept or Exelon patch. They made her violently ill.

 

I know that this sounds awful but why would you even want to give someone a drug to slow the progression of an already slowly progressive and fatal disease? Mom was diagnosed in 2009 but clearly had symptoms for almost ten years prior to that. The symptoms were so subtle at first that we recognize them only in hind sight. I think if were possible to diagnose AD in it's earliest stages, it would be worth doing something to slow the progression but since the diagnosis often comes so far into the disease, it seems almost cruel to try to slow it at that point.

 

My mom became so paranoid and difficult that we had to wait until she was far enough gone that we could trick her into seeing a Dr. for it. Even then, it was like an espionage plot in order to get the diagnosis. We do our best to make her happy (which is not easy) and deal with her frustration as well as our own.

 

She is physically strong and considering the toll her disease has taken on her husband and me, we may go before she does!! 


Bobbie F
Posted: Saturday, January 28, 2012 2:53 PM
Joined: 12/6/2011
Posts: 1


baydey wrote:

My mom takes seroquel which I think causes some additional confusion and some drowsiness but without it, she becomes very agitated and has temper tantrums that are frightening. She could not tolerate the Aricept or Exelon patch. They made her violently ill.

 

I know that this sounds awful but why would you even want to give someone a drug to slow the progression of an already slowly progressive and fatal disease? Mom was diagnosed in 2009 but clearly had symptoms for almost ten years prior to that. The symptoms were so subtle at first that we recognize them only in hind sight. I think if were possible to diagnose AD in it's earliest stages, it would be worth doing something to slow the progression but since the diagnosis often comes so far into the disease, it seems almost cruel to try to slow it at that point.

 

My mom became so paranoid and difficult that we had to wait until she was far enough gone that we could trick her into seeing a Dr. for it. Even then, it was like an espionage plot in order to get the diagnosis. We do our best to make her happy (which is not easy) and deal with her frustration as well as our own.

 

She is physically strong and considering the toll her disease has taken on her husband and me, we may go before she does!! 



Iris L.
Posted: Sunday, January 29, 2012 1:40 AM
Joined: 12/15/2011
Posts: 16187


baydey wrote:

I know that this sounds awful but why would you even want to give someone a drug to slow the progression of an already slowly progressive and fatal disease? Mom was diagnosed in 2009 but clearly had symptoms for almost ten years prior to that. The symptoms were so subtle at first that we recognize them only in hind sight. I think if were possible to diagnose AD in it's earliest stages, it would be worth doing something to slow the progression but since the diagnosis often comes so far into the disease, it seems almost cruel to try to slow it at that point.

 

 

 

People use the term "to slow the progression of the disease."  I have also heard it said that the medications do NOT slow the progression of the disease.  The medications DO help with memory, speech and language and with daily functioning.  These aspects may allow an ADLO to remain in the home for a longer time before placement into a facility is indicated. 

 

I believe lifestyle changes may in fact slow the progression of the disease.  I'm talking about changes in nutritional and hormonal supplements, cardiovascular improvements, and treating and reversing co-morbidities such as diabetes and chronic infections.  

 

Every patient's treatment must be individualized because the nature of the complex etiologies that cause a patient to develop Alzheimer's disease are so varied.  We have to make up our own treatment plans in conjunction with the "professionals". 

 

Iris L. 



MaggieH
Posted: Sunday, January 29, 2012 8:25 AM
Joined: 1/28/2012
Posts: 3


Glad to be back and hear from all of you.  This site is not "friendly", but perhaps I will get use to it.

 

I think the removal of the medicines could have made him somewhat moe alert.  He is saying a few words, but I am not sure that many of them are appropriate to the person hearing them.  It seems to me that he is mostly having coversations with someone not in the room. He mumbles all his words and all of sudden there is one you can understand.  I am glad he is off the medications.  I asked the doctor to take him off a couple of years ago, but she would not take him off.  I really think that most of the drugs for Alzheimer's are useless, but people use them because there is hope.  I really think the drug manufacturers are taking us to the cleaners.  LOL  I can say in all certainty that this has been the most destructive disease that I have ever been associated with.  It destroys family and the person.  God bless all of you who are involved with it. 


MistyBliss
Posted: Sunday, January 29, 2012 9:15 AM
Joined: 12/27/2011
Posts: 46


baydey wrote:

She is physically strong and considering the toll her disease has taken on her husband and me, we may go before she does!! 


Somewhere I saw a quote that 40% of Caregivers die before their loved one.  It can be so stressful!

baydey
Posted: Sunday, January 29, 2012 3:40 PM
Joined: 1/21/2012
Posts: 43


This site can seem like an unfriendly place sometimes. There is so much anxiety, frustration, and stress for caregivers and this site is a venue to relieve some of that. You will also find compassion, empathy, and genuine concern here. It could the cheapest therapy you will ever have.
JAB
Posted: Sunday, January 29, 2012 7:14 PM
Joined: 11/30/2011
Posts: 740


I think Maggie means the software is unfriendly, not the members.   

 

Maggie, it is possible to develop chronic adverse effects to meds, as well as near-term "acute" ones.  In addition, as the loved one ages and the liver and kidneys don't function as well, the loved one loses or gains weight, and/or has other changes in meds, the loved one may react differently to the AD meds.  If any of those happens, then s/he may do better when taken off.  And I'm ever so happy for you that it seems to be working out that way for your husband.

 

It's impossible to tell how much AD meds are doing for our loved ones, since we don't know how well they'd be doing if they weren't taking them.  I do know that, at least in the beginning, my husband responded so well to Namenda that his neuro kept saying it was a miracle.  Is it helping him that much now?  Who knows...

 

Iris is right, as far as studies have been able to determine, the meds do not slow the damage that is being done to the brain.  On average, there is no effect on mortality.  What the meds can do -- on average -- is help the brain function better in spite of the damage.  And that means they can help delay the emergence of symptoms.  But ... that's on average.  What happens with a given individual is difficult to predict.  They are just beginning to understand some of the differences in responses to Aricept, for example, which are driven by genetic differences in the drug's metabolism.

 

Diagnosed in 2000.  Wow, what a long time you've been on this journey!


MaggieH
Posted: Monday, January 30, 2012 11:13 AM
Joined: 1/28/2012
Posts: 3


Yes, I did mean "user friendly".  The people on this board have been so wonderful that I would love to meet all of them and give them a hug.  No, this site is not as easily accessible as the other one, but I am sure I will get use to it.

 

Yes, this has been a long journey.  My husband was the first dementia patient admitted to this new nursing home.  The home opened 4 years ago.  He and another lady are the only two remaining original 20 dementia patients.  Of course, my husband was only 58 when he was diagnosed.  He is now 69, and if it were not for the dementia he would be in excellent health.  I, on the other hand, have been through heart surgery, diabetes, etc., so the caregiver does suffer along with the Alzheimer's patient. 

 

I wish all of you love, patience, and support from friends and family.  Love all of you.