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what were the earliest signs?
heart
Posted: Monday, January 2, 2012 4:48 PM
Joined: 12/2/2011
Posts: 138


What were the earliest signs of EOAD that you wer aware of?

 

I have noticed memory issues with my LO, as well as a total personality change. AD runs in the family, though not EOAD. He has been low in B12 for many yrs, and testosterone levels have also been very low for several yrs.

 

With the sudden personality  change, I am wondering if more may be going on here. He will not discuss it with me, and refuses.


nwlegaleagle
Posted: Monday, January 2, 2012 6:12 PM
Joined: 12/6/2011
Posts: 3326


AD runs in my family. I was 62 when the first thing that happened to me was coming to a 4 way stop near my home, and forgetting whether I needed to turn right, left or go straight. It took 4 - 5 minutes for me to figure it out. Then several months later, as I was driving in well known areas, I would became confused as to where I was. I looked for landmarks until within a few minutes I recognized my location.  That happened off and on for about 5 months. Then one day I was about to leave my daughter's house and when I put my hand on the door knob, I found I didn't know where I was, though within a minute or two, I knew. 

That's when I saw a neurologist who immediately prescribed Aricept and Namenda waiting for my DNA test to came through. 

 

I was fine for about a year, but then I began to forget some words, although I could retrieve them after concentrating for a few minutes. That lasted for several months and happens now only occasionally.

 

About three months ago, I began to feel foggy headed, but after starting Axona, the fog cleared up.

These experiences have left me feeling insecure, so am no longer as adventuresome as I have been throughout my life. I think I'm an anomaly because no one at work or my family and friends notice any indication of AD. 

I have a sibling who exhibited behavior, such as asking me the same question 3 times in a row within 5 minutes, having some difficulty at work, and a change in her personality (anger, resentment), who was diagnosed with AD. We do not live close to each other, so don't know what else is happening.

 


Michigan Guy
Posted: Tuesday, January 3, 2012 7:28 AM
Joined: 12/28/2011
Posts: 5


Hi My name is Michigan Guy. Like you, I am also a lawyer.. I don't jhave much time to write,

Have a wonderful day,

MG


Iris L.
Posted: Tuesday, January 3, 2012 12:31 PM
Joined: 12/15/2011
Posts: 16183


nwlegaleagle wrote:

 

...I think I'm an anomaly because no one at work or my family and friends notice any indication of AD. 

 

 

 

Dear legal, what you have described is a touchy subject for me.  Unless you have specifically discussed your AD symptoms with people, it is hard to say.  Many times people have noticed changes, but they attribute changes to something else. 

 

 

 

 

 

 

 In my case, although I had been Chief of Pediatrics at my medical group, the Chief of Staff interpreted changes he noticed as bad behavior, and put me on probation.  I was a Senior Medical Officer, not a newly hired doctor.  One medical consult said there was nothing wrong with me, that I was malingering.  Needless to say, I'm still dealing with the same memory and cognitive issues 24 years later. 

 

 

 

I could tell you many other stories about friends and family who have withdrawn from me, thinking something negative about me, when the problem was merely that I was having trouble remembering.  Just recently a very close friend who I regarded as a sister told me she was "backing away" from our friendship, because she said I sent "mixed signals".  I don't know what "mixed signals" she meant, but she did not give me a chance to explain myself or even know what she was talking about. 

 

 

 

Iris L.   

  

  



nwlegaleagle
Posted: Tuesday, January 3, 2012 1:01 PM
Joined: 12/6/2011
Posts: 3326


Iris L. wrote:
nwlegaleagle wrote:

 

Dear legal, what you have described is a touchy subject for me.  Unless you have specifically discussed your AD symptoms with people, it is hard to say. 


Needless to say, I'm still dealing with the same memory and cognitive issues 24 years later. 

I could tell you many other stories about friends and family who have withdrawn from me, thinking something negative about me, when the problem was merely that I was having trouble remembering.  

I'm so sorry, Iris L., for the pain you have experienced because you haven't been understood and that friends and family have withdrawn. How frustrating and hurtful that must be for you. I am, however, impressed, amazed and a little jealous that you are so blessed to be doing so well after 24 years! 


John891
Posted: Tuesday, January 3, 2012 2:13 PM

Iris,

 

It seems to me that most people don't understand especially if you're young.  I'm 39 and according to doctors how can I possibly have AD.  I don't want to have it.  I probably don't but I know myself well and my memory has been bad for four years. Every second I forget something and it comes back to me after some serious concentration.  Sometimes it doesn't.  I'm tired of this, but I've learned to accept it.  I have no choice.  I'm following the best practices.   

 

You might remember that I said my testosterone levels were low and prolactin levels were high.  Risperdal, which I took for 8 years was responsible for that.  I weaned off from it partially and in December my testosterone levels improved.  They are not at the perfect range yet.  I will go in for another blood test next week to see how I am doing.  I also got off of Zoloft.  I don't feel that depressed anymore, but still have chronic anxiety.  My neurologist said it would take 3 months for my memory to come back to normal after stabilized testosterone levelsl.  A month has passed and my memory has not gotten any better.

 

I read that having low testosterone for a long period of time can make you susceptible to AD.  Like I said I took Risperdal for 8 years and probably had low testosterone all that time.  I am still hoping this is reversible.  I got to wait until March to see.

 

Well anyway I told my ex-urologist that I had bad memory and that's why the neurologist sent me  to him.  He totally dismissed me and said I had excellent memory.  I said he doesn't know my mind.  He said it happens to everyone.  He dismissed me as a nut.  As I result I dislike this doctor.  I appreciate it when they take your concerns seriously.  They aren't always right.  Now I have to make an appointment with another urologist and possibly an endocrinologist.   If this doesn't get better I'll go to the neurologist and get a spinal tap done. 

 

John


Iris L.
Posted: Wednesday, January 4, 2012 1:02 AM
Joined: 12/15/2011
Posts: 16183


John, have you searched manopause (male menopause) plus memory loss on the internet?  I know memory loss increases when a woman goes through menopause.  You need to find a knowledgeable urologist pronto.

Antidepressants can have a parodoxical effect and cause one to lose memory, not regain it.  It's good that you are off Zoloft.

Iris L.


John891
Posted: Wednesday, January 4, 2012 6:19 AM

Hi Iris,

 

This totally disappoints me that these psychiatric meds can cause permanent memory loss.  I was hoping that I would regain my memory.   I was having dreams of going back to college and having a good job.   The reason I never got my degree was because of anxiety and depression.  I'm close to it 15 more credits.  I have a huge problem too.  I have social phobia.  I really don't have friends.  This alone has ruined my life, and on top of that an enlarged heart caused by high blood pressure.  And the HBP is probably caused by the anxiety.

 

Why don't these doctors let you know that anti-depressants can cause memory loss.  This is totally fxxxxx up.  Excuse my French.  I probably never really needed these drugs in the first place.  I was not depressed when I first went to see a psychiatrist.  This was when I was 19.  My dad placed me there because I was terrified to go to work or college.  And for 10 months of graduating high school I was home bound.  My problem was fear of people.  I should have tried cognitive behavioral therapy and worked on my mind naturally not with medicines. 

 

Now I can't go back to college.  I know I will not pass the courses.  I only can do what I can do   And re-accept that the memory loss probably won't go away.  I'll have to live with it.  As a consequence I am going to drop the other two psychiatric drugs-Wellbutrin and Xanax before I get worse.  If I stay like I am that will fine.  I can't afford to lose more memory that is if I don't have dementia already.  That's why I am working out 2 hours a day everyday, doing meditation, doing deep breathing exercises, eating right, doing affirmations/ positive self-talk to make my anxiety less.  After I have been doing these things for the last 3 weeks and weaning off Risperdal and Zoloft, I have been doing great.  I have not been depressed.  I probably don't even have a chemical imbalance.  They want every depressed people to believe that so they take meds for life.

 

When you said that the memory loss will not be regained, I did some research and found extensive posts of people whose short and long term memory have been affected thanks to these psychiatric drugs.  I'll see in the following weeks if I can live without these meds.  So far with the withdrawal of the others I've been fine. 

 

And the doctor wanted to add Abilify.  I bought it and its sitting there.  Forget it.  I took like 10 different anti-depressants in 2004-05.  None of which worked. I have been non depressed without using Abilify so I know I don't need it.  I'm not going to pay 300 dollars out of my pocket to make myself worse.  Insurance barely covers.  I also learned that one of the side effects of anti depressants and anti anxiety drugs is that it can make you more anxious and depressed.  WTF?  Why do they even make these drugs if they can make you worse.   

 

I'm glad I have this board where people understand and thanks to you Iris and everyone for your support.  Life goes on.

 

John

 

 

 


nwlegaleagle
Posted: Wednesday, January 4, 2012 1:06 PM
Joined: 12/6/2011
Posts: 3326


Hi, John.

 

I had a bad reaction to Wellbutrin (very loud ringing in ears). I'm now using only a full spectrum lamp and feel great. (I also exercise and eat right.)  I have the lamp sitting next to my laptop and turn in on for 20 minutes a day while I'm perusing this Board.

 

Maybe you can borrow one to see if it works for you...or buy one and return it if it doesn't work for you.

 

Myriam 


John891
Posted: Wednesday, January 4, 2012 1:39 PM

Hi Myriam,

 

Thank for the suggestion.  I have never used this type of therapy.  I know lights can help me make feel better.  A sunny room for instance is good.  Staying out in the sun for 20 minutes is good Vitamin D.  Of course that's kind of hard in the summer since its so hot.  I'll look into this.  I noticed they cost over $100 though. 

 

John


nwlegaleagle
Posted: Wednesday, January 4, 2012 7:32 PM
Joined: 12/6/2011
Posts: 3326


John891 wrote:

I noticed they cost over $100 though. 

 

John

Yes, John. But a month's supply of Wellbutrin costs well over $100 a month. I've had my full spectrum lamp for almost 10 years. Needed it when I first moved to Drizzly Seattle from the sunny East Coast  (Don't get me wrong. Seattle is a great city!)

Ttom
Posted: Thursday, January 5, 2012 7:59 AM
Joined: 11/29/2011
Posts: 182


I'm taking a generic for Prozac called Fluoxetine HCL fro MedVantx (888-825-8474). They cost me $10 for a 3 month supply without using any insurance. Still have the ringing in my ears and dry mouth but at least I haven't paid much for the privilege!

 

They only sell generic precription drugs.

 

I think there are other mail order suppliers but I don't know of them for sure.

 

 

My disclaimer:
I'm not a professional in this area, only a person with AD that cares about others and can express myself yet. Diagnosed at age 58 in Stage 5, now appear firmly in Stage 4 for now- wonderful meds! I 'm 62 now..

We encourage you to call the Alzheimer's Association's 24/7 Helpline

1-800-272-3900 . Ask for a Care Consultant who will be available

Helpful hints for slowing the progression:

  1. Get Early detection
  2. Start the required drug therapy
  3. Avoid stress
  4. Mediterranean diet with antioxidants and Omega 3
  5. Mental and physical exercise


LATER... Tom

 


JAB
Posted: Thursday, January 5, 2012 12:02 PM
Joined: 11/30/2011
Posts: 740


Tom, you have the best sense of humor...
Iris L.
Posted: Thursday, January 5, 2012 4:37 PM
Joined: 12/15/2011
Posts: 16183


nwlegaleagle wrote:

...I'm now using only a full spectrum lamp and feel great.

Myriam 

 

 

Dear Myriam,  Cathy JM on the old board had many posts about how she set up light therapy for her partner.  When the archives are available you can check those posts to see if you want to make any additions or adjustments.

Iris L.


nwlegaleagle
Posted: Thursday, January 5, 2012 6:59 PM
Joined: 12/6/2011
Posts: 3326


Thanks, Iris.
JAB
Posted: Friday, January 6, 2012 2:02 PM
Joined: 11/30/2011
Posts: 740


Cathyjm has been posting recently.  You might want to start a thread on one of the caregiver forums (she posts on both) to ask her for information, Myriam.

 

I have this in my notes:

 

From: Southern Illinois University

 
    http://perspect.siuc.edu/05_fall/alzheimers.html

 

 While blue light was very calming to the Alzheimer's patients, LaGarce found that white light allowed them to be more attentive, alert, and relaxed and to function better.
    

 But when the ambient light was yellow or red, the patients' agitation grew markedly worse and their functioning declined.
    

 The study's findings were published in the autumn 2004 issue of the Journal of Architectural and Planning Research.

 

 Cathy JM posted:

 

 At night, though, amber light is better because it doesn't block melatonin production.
    

 So the idea is to have high levels of daylight and daylight-type artificial lighting during waking hours, but amber or yellow night at light. This helps regulate the melatonin cycle.
    

 I found amber LED night lights at Amazon.com that turn on automatically when it's dark, and use a yellow CFL bulb at one end of the room where we sleep. Keeping a little bit of yellow light on all night helps my partner not have hallucinations, which her vision problems otherwise trigger.


nwlegaleagle
Posted: Friday, January 6, 2012 4:04 PM
Joined: 12/6/2011
Posts: 3326


Thanks, JAB. I've been using the full spectrum lamp for the last 5 days since stopping Bupropion and have no signs of depression. The ringing in the ears because of Bupropion is now much less annoying and am hoping it will disappear within two weeks, as it did for Iris.  Am feeling really good!  For me, it's better than ingesting more chemicals.
John891
Posted: Friday, January 6, 2012 4:41 PM

Myriam,

 

Yeah I quit Wellbutrin (Buproprion) cold turkey I think about 4-5 days ago.  I feel fine as well. No withdrawal effects.

 

John


ffwife
Posted: Saturday, January 7, 2012 1:38 PM
Sorry to be weighing in late on the topic of dry mouth caused by meds. i use Bioten, it is a mouthwash made for people with dry mouth.No rx needed it is a OTC.
Iris L.
Posted: Saturday, January 7, 2012 9:20 PM
Joined: 12/15/2011
Posts: 16183


Myriam and John, congratulations on getting rid of the buproprion!  In addition to the light therapy that JAB mentioned above, please make sure you are getting adequate sleep, especially early morning sleep.  Many hormones are produced during early morning sleep, and when this is disrupted, depression ensues.

Iris L.


Violet
Posted: Monday, January 9, 2012 12:05 AM
Joined: 1/8/2012
Posts: 1


Is anyone familar with frontal temperol dementia?
John891
Posted: Monday, January 9, 2012 7:37 AM

Iris,

 

Thanks.  I quit Risperdal a month ago, but not cold turkey.  It was a slow process.  I quit Zoloft about three weeks ago.  And I quit Wellbutrin about a week and a half.  And I have been feeling great.  Very little depression.  I feel motivated with goals in my mind and a desire to live.  This proves to me that my depression is probably a hormonal problem.  I get tested on Wed to see how my testosterone is doing.  I think it might be in the normal ranges now since I quit this garbage. 

 

I still take Xanax. That is the only psychiatric drug I am taking. Anxiety is something I have to live with and it can get the best of me sometimes.

 

Oh and yes there is some improvement in my memory.  Yesterday someone asked me directions to the mall.  I was able to give them so well.  My thinking was clear I was impressed.  Word retrieval is easier now.  I am using words I rarely have used.  Maybe this is happening because there's not much depression and it makes my mind more clearer.  In other aspects, my memory is the same, but that's okay

 

John


Ttom
Posted: Monday, January 9, 2012 8:11 AM
Joined: 11/29/2011
Posts: 182


Violet wrote:
Is anyone familar with frontal temperol dementia?

Hi Violet an d Welcome. FTD is understood here. What are your questions?

 

I have stared a topic dedicated to FTD under "I have Alzheimer's or Another form of dementia". I hope that will aid you and other members.


JAB
Posted: Monday, January 9, 2012 7:59 PM
Joined: 11/30/2011
Posts: 740


Violet wrote:
Is anyone familar with frontal temperol dementia?
Hi, Violet, welcome to the forum.  We have many caregivers whose loved ones have frontotemporal dementia (FTD), and younghope has FTD.