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How did you handle the diagnosis?
Ed1937
Posted: Monday, August 6, 2018 1:55 PM
Joined: 4/2/2018
Posts: 1307


This is my first post on this forum. I'm usually on the spouse/partner caregiver forum.

My wife, a retired RN, has had the tests, and we have a meeting with the neurologist coming up within the next two weeks. We have a good relationship with him, and I'm struggling with whether or not I should get the diagnosis (if he has one) without her knowing because I'm not sure how she will handle it. The needed papers have been signed to allow this. So that brings me to this question - If you have been diagnosed, what emotions did you experience, and how long did they last before you became accepting to the point where you could focus more on what you could do to improve your life, instead of having those emotions consume your every minute? I know there are pros and cons for her knowing the diagnosis. Any suggestions will be appreciated.

I wish you all the best on this difficult road to be on.


Mimi S.
Posted: Monday, August 6, 2018 7:36 PM
Joined: 11/29/2011
Posts: 7036


I'm all for telling. If she is in Early Stage and knows something is wrong, many of us found the actual words a relief. yes, I'm not crazy. There is something wrong with mew.  After the diagnosis, when I'd forget or goof, I merely shrugged and thought, that's the AD.

Some folks have what is called Anosognosia, the inability to recognize there is a problem. others will refuse to hear the A word.  In those cases, you deal with it.  some folks might acdept: you have a slight memory problem. 

i reiterate, your wife should have the right to hear her diagnosis once.

 


Ed1937
Posted: Monday, August 6, 2018 8:07 PM
Joined: 4/2/2018
Posts: 1307


Thank you, Mimi. I was leaning toward asking for the diagnosis in front of her at the next appointment. I guess I'm expecting a diagnosis of MCI, but I know she has a deficiency in 2 "B" vitamins. Maybe we'll get lucky.

I've read many of your posts, and I want to say thank you for those. Every one seemed to be helping someone.


Misssy2
Posted: Friday, August 31, 2018 8:41 PM
Joined: 12/14/2017
Posts: 1714


I'm still being consumed every minute..diagnosed last Friday with FTD.  

And I knew there was more wrong with me than "anxiety" as Drs have been claiming for years.

NOW I have anxiety...LOL.

I will pass thru this quickly and on to acceptance cause i have AA and the gym...we have tools that my parents didn't have. 

And I will use them.

 


dolor
Posted: Friday, August 31, 2018 10:00 PM
Joined: 11/9/2017
Posts: 308


Missy, I am so sorry. Did you get a copy of the pet scan? I can't help but wonder if you should get a second opinion, just in case. 

I thought pets were only efficient in diagnosing Alz...


Mimi S.
Posted: Friday, August 31, 2018 10:47 PM
Joined: 11/29/2011
Posts: 7036


Hi Dolor, Why do you think a second opinion is in order? if the diagnosis were given by an organization such as a large Medical Center or Hospital and covered all the important items coverd by Doraiswamy and Gwyther, I would have confidence. It's usually several days of appoijtments; to me repeating would not be fun.  I'm not sure an insurance co would pay.

Pet scans when positive show the progression of the disease (too well.)


dolor
Posted: Saturday, September 1, 2018 12:04 AM
Joined: 11/9/2017
Posts: 308


Hi Mimi,

Part of the reason admittedly is that I don't understand what the pet scan shows. I was under the impression, apparently mistaken, that they were only useful in diagnosing Alz, not the other dementia diseases. Unfortunately I don't remember where I got this idea. But the use of the pet scans for diagnoses is new, correct? Meaning we no longer have to rely on autopsy?

Which is the other part of the reason--if the technique is new, I would be uneasy not having a second (or more) doctor evaluate. I have a profound lack of trust in doctors, not made better by the ineffective and disorganized treatment my mom received. My brother is a hospice and LTC doctor; talking to him I learn how...difficult...precision is. 


Misssy2
Posted: Saturday, September 1, 2018 7:36 AM
Joined: 12/14/2017
Posts: 1714


Hi dolor..this was my second opinion.

4 years ago I started having testing because i left lucrative employment due to them mentioning my behaviors and my forgetfulness..

I got sick of them thinking I was just being careless and/or spiteful and decided to go out on leave after 19 years..and testing began because I wanted to prove to them that I could NOT help it and I knew that something was wrong with me....

My first Neurologist was looking for MS because my sister has MS.

My CT Scan came back "abnormal" but not typical of MS.

Then my MRI came back as "abnormal" but again not typical of MS.

The original Neurologist I had said they really don't know enough about the brain in combination with my abnormal scans to determine IF the patterns my brain were showing on the CT and MRI could be the reasons for the memory and behavior changes.

I was pissed....so when I took my Dad to this Neurologist for his dementia...

I asked her if she would take a look at my scans and give me a second opinion.

I went back to her about a month ago because I was having more troublesome symptoms....and she ordered the PET Scan.

She called me last Friday and told me that I was "correct" and that she did the PET Scan to see how my brain was functioning (metabolically)...She said my brain was not functioning metabolically as would be expected for my age...and that she saw in my brain the reason why I am struggling in the areas I am struggling in and here is the excerpt she wrote in my letter.

"We obtained a PE scan of her brain (metabolic evaluation) and this demonstrated decreased metabolism in a pattern most suggestive of an early fronto-temporal type dementia".

This letter is for me to take to all the Naysayers that tell me that my memory problems are DUE TO ANXIETY ONLY.  Every single Dr or therapist I have had in the last 4 years has chalked all of my symptoms up to anxiety and I am on disability for "severe anxiety" because of all these drs..lol.

 

 


ExpressoTime
Posted: Saturday, September 1, 2018 9:39 AM
Joined: 3/11/2018
Posts: 548


Missy, hugs! At least you have an answer. You can work with what is called "best practices" to keep this at bay as long as possible. I'm sure you know about eating right, exercise, staying away from cigarettes and alcohol, and getting enough sleep. Also keeping stress levels to a minimum whenever possible. I'm here anytime you want to talk! You'll be alright
dolor
Posted: Saturday, September 1, 2018 11:09 AM
Joined: 11/9/2017
Posts: 308


Wow Missy what a tornado of emotions that has been! 

I know that feeling of validation of getting a diagnosis that will shut people up. American employers are sharks--and sometimes families aren't much better. 

You must be exhausted. 

Your dad has a diagnosis of LBD, correct? I have been reading about "back to back generational FTD"--to add to the giant jigsaw puzzle from hell, there appear to be several types. 

I'm so sorry you are going through this. 


Misssy2
Posted: Saturday, September 1, 2018 10:32 PM
Joined: 12/14/2017
Posts: 1714


There is  a sort of brain cancer but I think I found out really early...so I have plenty to do

 


Misssy2
Posted: Sunday, September 2, 2018 4:28 PM
Joined: 12/14/2017
Posts: 1714


Ed I was caught up in my stuff...and after diagnosis which was over a week ago...I am finally accepting that there is a different life coming my way.

I think that keeping a positive attitude..taking walks....reading...taking brain tests...on line.

I think she has the right to know..so hopefully you will hear the diagnosis together...and then when it is said...you can then support her in how she will be the best she can be...

I would say an absolute wrong thing to do would be to say stuff like "alot of people have this diagnosis"....You are young..you will beat it.

I think she needs validation first...like "Wow" I'm sorry honey this is the diagnosis...

What can we do to take your mind off this and let you absorb it? A massage at the local spa? A pedicure...a nail job? Dinner?

Anything but focus on it ...until she wants to focus on it.

 


Carls
Posted: Thursday, February 28, 2019 11:28 AM
Joined: 2/28/2019
Posts: 6


Hi. I have been recently diagnosed with White matter disease, Vascular dementia and clogged carotid arteries . I am curious to know if there is someone out there with the same combination?
Mimi S.
Posted: Thursday, February 28, 2019 12:24 PM
Joined: 11/29/2011
Posts: 7036


Welcome to our world Carls, I'm so glad you found our site.

Yes, I have white matter that shows in brain scans but not clogged arteries. 

I do recall that when I first saw an internist upon the recommendation of my neurologist, that he was very proactive in monitoring the heart. 

Several of the PWD on these boards strongly advocate for the Best practices life style. Research has shown it can prolong or stay in the earlier stages.

1. Take meds when directed.

2. Vigorous as possible physical exercise.  The goal is to get the heart pupig at a faster than normal rate for a bit. This has been shown to build new brain tissue.

3. Varied cognitive exercises. The goal is to stimulate, not frustrate.

4. Mediterranea diet. If this is a drastic change, go slowly.  No smoking!!!   Limited alcohol.

Maintain or increase socialization.  We need personal interaction with others daily.  Most of us do not do well in crowds and noise.

Do keep in touch.


Iris L.
Posted: Thursday, February 28, 2019 1:55 PM
Joined: 12/15/2011
Posts: 16085


Welcome Carls.  I, too, have lesions in the white matter of my brain on MRI.  My neurologist calls it leukoairiosis.  Following Best Practices as Mimi has outlined has given me time.  My functioning has improved and my early stage was prolonged for many years. No one can predict the future because we are all individuals.  We can only do the best we can and hope for the best.  Note, following Best Practices is not a cure, but they can help.

 

Please continue to read and to post.  Feel free to begin your own thread by clicking on "Add Topic" on the main "I have Alzheimer's" page.

Iris L.


Smilesyourway
Posted: Friday, March 1, 2019 2:18 AM
Joined: 1/11/2019
Posts: 70


Hi Carls:

I, like you, have a diagnosis of WMD, hence vascular dementia.  I was diagnosed 18 months ago when I was 57.  How you you doing?  How are managing the diagnosis?  Will they be correcting your carotids? 

Smile


Carls
Posted: Friday, March 1, 2019 8:23 AM
Joined: 2/28/2019
Posts: 6


I apologize for the lack of posting, but as what has become of my life, I lost it some how after writing for over an hour! This has become a constant in my life. I cannot finish anything. I cannot think anymore. Nothing comes out correctly as I was used too. I will try it again after I get over this.
Iris L.
Posted: Friday, March 1, 2019 4:10 PM
Joined: 12/15/2011
Posts: 16085


No worries, Carls!  Losing posts happens to all of us.  If I think I will have a long post, I will sometimes type it out in Word, then copy and paste it into my post on this board.  It involves more steps, but then I don't risk losing a long post.  I hope you will have a good weekend.

Iris


Carls
Posted: Saturday, March 2, 2019 7:16 AM
Joined: 2/28/2019
Posts: 6


Thank you Iris. That is a good idea. I want to thank all of you that accepted me into your group. I hope that I can be beneficial and not just a swirling drain. Have a great weekend!
Smilesyourway
Posted: Saturday, March 2, 2019 7:44 AM
Joined: 1/11/2019
Posts: 70


Good Morning All:

Carls, please remember to take the time to just be.  You are newly diagnosed and the typical story is depression, anxiety and grief (all forms of grief) anger, denial, depression and eventually acceptance.  I cried myself to sleep for months after my diagnosis.  I definetely know that my symtoms were FAR worse during that period of time then they are now.  My brain was all over the board............

Please give yourself some time and step right into the fear and embrace the human natural reactions to grief.  It will help you get through it all faster.  Most everyone out here knows just what you are going through and its awful.

Hugs and well wishes.

Smiles


Iris L.
Posted: Saturday, March 2, 2019 9:53 AM
Joined: 12/15/2011
Posts: 16085


I went through a deep depression and determined that I was not going to let my life be awful. It hasn't been easy, but I used all that I learned from the members here in order to make my life not awful, but fulfilling for me.  I refuse to live in misery.

 

Iris


Carls
Posted: Saturday, March 2, 2019 11:48 AM
Joined: 2/28/2019
Posts: 6


Thank you Smiles and Iris. I do realize what has to happen but I have had my lifestyle for 68+ years. I don't especially want to change it. I know it has to change but what will be the consequences if I don't adhere to Best Practices, how will this all turn out? A shorter lifespan or a lot more suffering?
Iris L.
Posted: Saturday, March 2, 2019 4:03 PM
Joined: 12/15/2011
Posts: 16085


As there is yet no cure for the dementias, the treatment is whatever makes you comfortable.  The Best Practices lifestyle may help you function better.  Or it may not.  The Best Practices lifestyle may prolong the early stages.  Or it may not.  No one can predict for you; you have to see what happens over time.  

 

In 2008 I was functioning so poorly that I was ready to move in with a relative.  Now, after following Best Practices lifestyle, I still live independently, and I expect to do so for a few more years.  This doesn't mean that I haven't had progression, because I can tell that I have progressed.  In fact, I am getting ready for some major accommodations this year.

 

Carls, do as much or as little as you feel comfortable doing for yourself.  This is YOUR life.  You should not feel pressured to do more than you want to do.  We can use this time to figure out how we want to spend the rest of our lives.  We can make preparations and inform family members and any others who might have a need to know.  We can make our plans.  Then, go for it!  Live! Live the way you want!

 

Iris


Carls
Posted: Monday, March 4, 2019 8:32 AM
Joined: 2/28/2019
Posts: 6


Thank you again Iris.