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New Diagnosis - Dementia Very Likely Alzheimer's
RetiredGeek
Posted: Thursday, January 24, 2019 8:34 PM
Joined: 12/24/2018
Posts: 8


In October 2018, I was diagnosed with Mild Neurocognitive Disorder. Three weeks ago I posted that I was concerned about having "frequent senior moments." I have had two follow-up assessment appointments since then and on Monday 1/20/19, I learned that I have Dementia, very likely Alzheimer's Disease. I will be having new MRI and CT scans at Duke Univ. to rule out other potential causes (brain tumor?). My symptoms are clearly Alzheimer's (8 of 10).

My senior moment frequency has increased to 15 - 25 times daily. I am very concerned that my memory issues have profoundly increased in the past six months and may represent a fast progression pace. Sure hope I'm wrong on that point.

In the past couple of weeks, I have been having anxiety attacks, not panic attacks, 2 - 3 times weekly. The attacks last from 5 - 15 minutes long. 

It's only been 4 days since the diagnosis and I'm still trying to come to terms with it. 

This has unfolded in the midst of my wife's chemo & immuno therapy drug infusions. She was initially diagnosed with breast cancer five years ago. (Our cancers were diagnosed five months apart in 2013.) She had a lumpectomy and 35 rounds of radiation treatments.

Three months ago during a routine Mammogram it was determined that the breast cancer had returned and had the HER2 gene mutation which is an aggressive form. She had bi-lateral mastectomies with reconstruction. Six weeks ago she developed an antibiotic-resistant infection in her right breast. The left breast reconstruction is progressing as expected. 

On Monday (same day as my Dementia diagnosis) she learned that she needed surgery the next morning. She received the two immunotherapy drugs but the chemo drugs were delayed until next week due to the infection. She had surgery on Tuesday to remove the right breast tissue.

The point is this has been a really shitty week for us. Hopefully better days are ahead soon. 

I will be keeping a daily log of memory lapses et al moving forward.


AmyJo5
Posted: Tuesday, February 5, 2019 8:27 PM
Joined: 7/28/2017
Posts: 176


Thinking of you and your wife. A shitty week indeed. Thank you for sharing your struggles: we're here to lean on one another. Wish I could help more.
Iris L.
Posted: Tuesday, February 5, 2019 10:14 PM
Joined: 12/15/2011
Posts: 16088


I am sorry to learn of your wife's cancer diagnosis, Retired Geek.  May she have success in her treatments!

 

I too had anxiety spells in the earlier years.  One of our emeritus members, Alan in Colorado, who was himself a psychologist, told us that stress and anxiety reduce our cognition by HALF!  This awareness made me more diligent to seek out and use stress-reduction techniques.  I have noticed a difference.

 

Iris L.


Smilesyourway
Posted: Wednesday, February 6, 2019 1:17 AM
Joined: 1/11/2019
Posts: 70


How are you doing Retired Greek? Your plate is certainly full. The anxiety is crazy, don't hesitate to talk to your doc about it.  When I was first diagnosed I cried myself to sleep for months.  Depression was over the top!  I finally talked to my doc and she prescribed Buspirone which settled me right down without that I can't get out of my chair feeling.  Chat with you doc, they may be able to ease the anxiety a bit. 

I thought I was progressing on a rapid track, until I finally got myself settled down with a tad of anti-depressants and the Buspirone.  Of course the last thing we want is more medications........but like Iris shared cognition declines with high anxiety and depression which is exactly what my doc shared as well. 

Each darn* step is scary.  Hang in there and keep us posted on how your doing. 

Smiles!

 

 


HowDoYouDeal
Posted: Friday, June 28, 2019 11:30 AM
Joined: 2/17/2019
Posts: 124


I am going to sound like a crazed person, but light therapy aka PhotoNeuroModulation and Focused ultrasound therapy, as well as LLLT ( low level laser therapy) Redlight therapy, NearInfrared Light /Cold Lasers are doing wonderful things for diseases that are otherwise considered untreatable, including brain cancer, alzheimers, parkinsons......
Michael Ellenbogen
Posted: Friday, June 28, 2019 8:32 PM
Joined: 11/30/2011
Posts: 2389


Let us know how it works for you?
EHC
Posted: Saturday, June 29, 2019 5:18 AM
Joined: 12/4/2018
Posts: 5


Hello Retired Geek. I read your post and it seems you are in or near despair. My heart goes out to you but please don’t despair. I was diagnosed with Alzheimer’s a little over three years ago based on a Pet Scan which is the only 100% certain and reliable diagnosis available. It actually highlights the amloyd plaques associated with Alzheimer’s so their is no maybe about it - I have Alzheimer’s.  I can vividly recall the shock I felt when my Alzheimer’s was positively confirmed. Even though I knew something was wrong with my constant memory lapses and ever increasing agitation over things that never bothered me before, deep inside I was hoping they would call it a normal age related phenomenon. Even when you’re half way prepared for the diagnosis it still comes as a shock. That’s because all the hype surrounding dementia makes one view it as a death sentence. It seems so final.

While it is true that Alzheimer’s is still incurable always  remember that it’s usually a long term progression. Many Alzheimers patients live to advanced ages and often outlive the societal norm. Anyway, everyone has an expiration date, even the healthiest among us. It’s called the circle of life. That knowledge helped me escape the depression of filling sorry for myself. It just happens to be true that nobody escapes death. It’s also true that everybody has to die of something.

 I also have severe COPD. Their is a high likelihood that my COPD will take me out before my Alzheimer’s so I’m not going to spend an exorbitant amount of time worrying about my Alzheimer’s. You see, it’s all a matter of perspective. Certainly pray for a cure and certainly take care of yourself and supplement wisely to delay the progression of the disease and enhance your cognition and focus, but still live your life. Remember, stress is the absolute worst thing that will exasperate and speed the progression of any dementia. Laughter is a stress reliever and one of the most beneficial things to slow down the progression of Alzheimer’s. Replace sadness with gladness and find reasons to laugh as much as possible. Use your time to live your life to the fullest within your means to do so.

Use the time that you still have full control of your faculties to get your affairs in order as quickly as possible (i.e., wills, powers of attorney, arranging joint bank accounts with your partner or other trusted family member to pay your bills and make decisions on your behalf when you are no longer able to do so). This you must do and do quickly while you still can. Consider it both a duty and a responsibility. This is NOT something you put off. Once it’s done you won’t have to worry about it anymore and you’ll experience a sense of peace in knowing that the future is taken care of and that it will be done in accordance with your wishes. Then you can rest and enjoy the rest of your life - and you still have a lot of life left to enjoy.

Keep a good attitude. Sometimes I even joke about my Alzheimer’s to put others at ease. Don’t hide your diagnosis as if you were ashamed of it. It’s not an STD. You didn’t do anything to get it. It’s not your fault in anyway. Alzheimer’s is NOT taboo so don’t hide your diagnosis or allow anyone else to. Talk about it openly and freely with family and friends. They need to know what to expect when you progress and how they can help you. That means you should make yourself an expert on Alzheimer’s so you can answer all questions and help others to understand and plan. This research also forces you to use your mind which is very important in maintaining your cognition for as long as possible.

My advice, start taking a tablespoon full of coconut oil every morning and just before bedtime. Buy a good quality MCT oil in addition to that. Their is considerable research attesting to its benefits to all dementia patients and frankly I credit it with slowing down my Alzheimer’s progression far more then doneprizil ever could. I also take Ashwandada and Bacopa on the advice of my neurologist and together, after three years since my diagnosis, my Alzheimer’s progression has only barely advanced. The medical staff who monitor me are astonished by this. I can’t promise you’ll get the same results that I have but I can tell you that it definitely works for me.

I also drink lemon juice. a teaspoon of honey, and a teaspoon of Moranga once a day in tea or hot water. I also take achemp oil pill every morning and “Geneaire Rebuilder” twice a day. “ Geneaire Rebuilder is a bit pricey and to my knowledge is only available over-the-counter in the USA. It’s a fairly recent phenomenon. Is highly scientifically tested and fully approved by the stringent US Food and Drug Administration (FDA). I buy mine on Amazon.com USA. I’m actually surprised by how much it has helped me. Look it up. Google it. Research it like I did. 

Don’t despair my friend. We still have a life to live so make it a good one for as long as possibly can. Keep a positive attitude and never forget to laugh. In fact, laugh a lot.

 


EHC
Posted: Saturday, June 29, 2019 5:45 AM
Joined: 12/4/2018
Posts: 5


MY ADVICE TO ALL RECENTLY DIAGNOSED ALZHEIMERS PATIENTS.

Hello my fellow Alzheimer’s patients. I was diagnosed with Alzheimer’s a little over three years ago based on a Pet Scan which is the only 100% certain and reliable diagnosis available. It actually highlights the amloyd plaques associated with Alzheimer’s so their is no maybe about it - I definitely have Alzheimer’s.  I can vividly recall the shock I felt when my Alzheimer’s was positively confirmed. Even though I knew something was wrong with my constant memory lapses and ever increasing agitation over things that never bothered me before, deep inside I was hoping they would call it a normal age related phenomenon. Even when you’re half way prepared for the diagnosis it still comes as a shock. That’s because all the hype surrounding dementia makes one view it as a death sentence. It seems so final. But hold up. It’s not that grim. You still have a life to live.

While it is true that Alzheimer’s is still incurable always remember that it’s usually a long term progression. Many Alzheimers patients live to advanced ages and often outlive the societal norm. Anyway, everyone has an expiration date, even the healthiest among us. It’s called the circle of life. That knowledge helped me escape the depression of filling sorry for myself. It just happens to be true that nobody escapes death. It’s also true that everybody has to die of something. And give up this “Why me” attitude. If not you then who? Would you take the place of a terminal cancer patient because they said, “why me?” If not them then who. This is just how life works out. I certainly am not pleased that I have Alzheimer’s but I don’t wish it on anyone else either. I wish all diseases could be eradicated but they’re not, and that’s reality. Just like the rest of us, you need to accept and deal with your reality and then make the most of it. Feeling miserable and depressed will not cure you but it will Savage the lives of your loved ones around you so stop it. 

 I also have severe COPD. Their is a high likelihood that my COPD will take me out before my Alzheimer’s so I’m not going to spend an exorbitant amount of time worrying about my Alzheimer’s. You could die in a car crash or die of a heart attack tomorrow. Just because you have Alzheimer’s doesn’t mean you will die of Alzheimer’s. You see, it’s all a matter of perspective. 

Certainly pray for a cure and certainly take care of yourself and supplement wisely to delay the progression of the disease and enhance your cognition and focus, but still live your life. Remember, stress is the absolute worst thing that will exasperate and speed the progression of any dementia. Laughter is a stress reliever and one of the most beneficial things to slow down the progression of Alzheimer’s. Replace sadness with gladness and find reasons to laugh as much as possible. Use your time to live your life to the fullest within your means to do so.

Use the time that you still have full control of your faculties to get your affairs in order as quickly as possible (i.e., wills, powers of attorney, arranging joint bank accounts with your partner or other trusted family member to pay your bills and make decisions on your behalf when you are no longer able to do so, etc, etc.).  This you must do and do quickly while you still can. Consider it both a duty and a responsibility. This is NOT something you put off. Once it’s done you won’t have to worry about it anymore and you’ll experience a sense of peace in knowing that the future is taken care of and that it will be done in accordance with your wishes. Then you can rest and enjoy the rest of your life - and you still have a lot of life left to enjoy.

Keep a good attitude. Sometimes I even joke about my Alzheimer’s to put others at ease. Don’t hide your diagnosis as if you were ashamed of it. It’s not an STD. You didn’t do anything to get it. It’s not your fault in anyway. Alzheimer’s is NOT taboo so don’t hide your diagnosis or allow anyone else to. Talk about it openly and freely with family and friends. They need to know what to expect when you progress and how they can help you. That means you should make yourself an expert on Alzheimer’s so you can answer all questions and help others to understand and plan. This research also forces you to use your mind which is very important in maintaining your cognition for as long as possible.

My advice, start taking a tablespoon full of coconut oil every morning and just before bedtime. Buy a good quality MCT oil in addition to that. Their is considerable research attesting to its benefits to all dementia patients and frankly I credit it with slowing down my Alzheimer’s progression far more then doneprizil ever could. I also take Ashwandada and Bacopa on the advice of my neurologist and together, after three years since my diagnosis, my Alzheimer’s progression has only barely advanced. The medical staff who monitor me are astonished by this. I can’t promise you’ll get the same results that I have but I can tell you that it definitely works for me.

I also drink lemon juice, a teaspoon of honey, and a teaspoon of Moranga once a day in tea or hot water. I also take a hemp oil pill every morning and “Geneaire Rebuilder” twice a day.” Geneaire Rebuilder is a bit pricey and to my knowledge is only available over-the-counter in the USA. It’s a fairly recent phenomenon. It is highly scientifically tested and fully approved by the US Food and Drug Administration (FDA), a stringent governing body. I buy mine on Amazon.com USA. I’m actually surprised by how much it has helped me. Look it up. Google it. Research it like I did. 

Don’t despair my friend. We still have a life to live so make it a good one for as long as possibly can. Keep a positive attitude and never forget to laugh. In fact, laugh a lot.

 

 


Michael Ellenbogen
Posted: Saturday, June 29, 2019 7:18 AM
Joined: 11/30/2011
Posts: 2389


What great advice.
Iris L.
Posted: Saturday, June 29, 2019 11:44 AM
Joined: 12/15/2011
Posts: 16088


Ditto.  You have a great philosophy, EHC.  

Iris


Iwish
Posted: Thursday, July 4, 2019 11:51 PM
Joined: 7/2/2019
Posts: 6


Were you under all that stress when they did the testing? Did they know about it? 

If my spouse was in a life-threatening crises, I probably wouldn't score 10 points on an IQ test. I would be lucky if I remembered my name.

Take care. I wish you the best.


Iris L.
Posted: Friday, July 5, 2019 11:00 PM
Joined: 12/15/2011
Posts: 16088


Neurocognitive testing is supposed to be done under neutral conditions, meaning not under stress.  The neuropsychologist is supposed to evaluate for factors that might interfere with the testing.

Iris L.  


PattieR
Posted: Tuesday, August 13, 2019 3:28 PM
Joined: 8/13/2019
Posts: 2


Wow. I really needed to find this site and read your message. I am 65 yo female just diagnosed (1 week)  with early alzheimers.  I have 2 aunts that were diagnosed in their early 70s. When I told my cardiologist of my diagnosis he told me to take 1 tsp virgin coconut oil a day. Maybe I should increase it.!! I started the Mememtine starter pack 7 days ago and am scheduled to begin Aricept in a couple of months. I read it causes nausea so I'm not looking forward to that. Even though I am retired from my full time Controller position, I still teach online accounting courses for an online university.  I am trying to keep as mentally active as possible. My greatest fear is spending our nest egg on my long term care rather than having my husband enjoy what we both worked for all those years. (no kids).
Army_Vet60
Posted: Tuesday, August 13, 2019 8:40 PM
Joined: 6/21/2019
Posts: 348


Retired Greek,

The type of stress and depression you're under causes "dementia" like symptoms.

If you're not being treated for anxiety/depression with meds, you may want to deal with that issue before accepting the Dementia diagnosis.

I was in the military and after 15 years presented symptoms that were identical to middle stage ALZ. I was forgetting where I lived, the names of co-workers, where I parked my car, etc.

I admitted myself to the base hospital for testing. It turned out other service related issues triggered PTSD and severe depression. My brain was overloaded and short circuiting. Medication cleared it up to the point I could function again and finish the last five years of service.


Iris L.
Posted: Wednesday, August 14, 2019 5:30 PM
Joined: 12/15/2011
Posts: 16088


Welcome, PattieR.  Although there is no cure for Alzheimer's Disease, there is much you can do.  If you have trouble with Aricept, consider Exelon patch instead.

Get your legal and financial affairs in order.  Then travel and do other bucket list activities now, while you can.  Make changes to your living situation now, if you decide you need to make changes. 

The journey will be hard, but there are many here who will help.

Iris L.


squeeker
Posted: Thursday, August 15, 2019 9:17 AM
Joined: 5/23/2019
Posts: 1


I have a diagnosis of Alz via a Pet Scan.  The day I was tested for amount of dementia

[verbal, computer, memory word lists, etc.]  I had just had a stressful fasting sugar where nurse seemed nervous and missed my vein 3 times, finally digging deep and hitting a nerve.  This was very stressful to me and I had completely lost confidence in that nurse. All I wanted was to go home but 3 more hours of testing ensued.

I have since emailed my neurologist and asked to be re-tested.  I have an appt on Sept 3rd.

Wish me luck.  I know I have mild Alz but would like to be cleared to drive short distances.  Has anyone else had their driving privileges take away?  I did pass my driver's license renewal tests.

 

 

 


PattieR
Posted: Thursday, August 15, 2019 3:27 PM
Joined: 8/13/2019
Posts: 2


Thanks for recommendations. Keep them coming.
Iris L.
Posted: Thursday, August 15, 2019 4:43 PM
Joined: 12/15/2011
Posts: 16088


Welcome, squeeker.  You are right to be concerned.  The neurocognitive tests are supposed to be administered under optimal conditions, not when the patient is under stress.  

I hope dementia mimics have been ruled out by medical tests.

Iris


 
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