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PET scan results(1)
Horse Lover
Posted: Friday, June 22, 2018 5:45 PM
Joined: 11/4/2017
Posts: 124


I received bad news today.  I was enrolled to participate in a study and it paid for me to have a PET scan.  I got the results today.  Too much Amyloid plaque to even participate in the study.  All the way around, this has been bad news.  The study was cancelled right after I had the PET done.  Now, my hopes have gone down the tubes that maybe I don't really have Alzheimers disease.  They told me that this, along with the results of my other tests, confirms the diagnosis.  I'm heart broken, angry, frustrated, scared and every other emotion that you can imagine.  This was my last hope at proving that they were wrong.  I have seen this disease kill several family members and my oldest sister has been in a nursing with EOAD for several years.  Honestly, I don't know how she is still alive.  She can't remember how to do anything, including how to walk or feed herself.  She is a shell.  I'm really scared. I'm worried that my husband won't know how to take care of me.  Worse yet, I'm worried that I'll become one of those uncontrollable patients that we have all read about.  I've always been able to fix problems in my life.  I don't know how to fix this.  I'm at a total loss right now.
Iris L.
Posted: Friday, June 22, 2018 7:10 PM
Joined: 12/15/2011
Posts: 16200


I'm sorry you have gotten confirmation of Alzheimer's Disease, Horse Lover.  You can't fix what is happening to you but you can fix how you respond to what is happening.  How do you want your life to go?  Not all patients have a rough journey.   Some patients have a gentle journey.  What can you do to prepare yourself?  What can you do to take care of yourself?  You do have some power in your own hands right now.  


Iris L.


jfkoc
Posted: Friday, June 22, 2018 8:22 PM
Joined: 12/4/2011
Posts: 17566


I am certain it is going to take some time to absorb your news and sorry it was not what you were longing to hear.
We are here with you, people with dementia and caregivers too. We have much to share with you and your husband...

alz+
Posted: Saturday, June 23, 2018 7:05 AM
Joined: 9/12/2013
Posts: 3549


Horse lover!

the shock lasts awhile. Almost everyone struggles with the diagnosis and I still do, I think we all do when our abilities change along the way. It brought up all kinds of other losses for me, but I had zero support at the time.

Iris talked me through every day for 2+ YEARS. You have only people here who understand this shock and the fear of what is to come.

Maybe as you process this consider there are now some things that could help you a lot and there are new insights into the illness coming fast. I know it seems hopeless, I still have those moments but I keep them short because that is not happening yet.

Use the boards as much as you need to handle the news. Love on your animals, be inspired by While You Still Can to do what matters to you most regarding your life with  others.

and as you go thru this, note what you WISH YOU HAD to help handle this diagnosis and help us create that for the millions of others yet to be diagnosed.

You matter, you always will, much love to you.


BadMoonRising
Posted: Saturday, June 23, 2018 12:15 PM
Joined: 4/22/2017
Posts: 286


I get it. The excessive amyloid can actually be SEEN so it's difficult, if not impossible, to maintain any sense of denial. God knows I've tried.

It is not unlike a patient complaining of a lump and learning from her PET scan that she has metastatic cancer for which there is no proven successful treatment.

In fact, we receive similar  advice. First and foremost, get your affairs in order.  Eat well, exercise and start working on your bucket list while you are still able to do so. Oh, and while you're at it, consider participating in clinical studies that will help us beat this horrible disease. (Note that I do not disagree with this advice.)

I pray that your emotional roller coaster ride will soon end and that your anger, sadness, and bone chilling fear subside. 



Horse Lover
Posted: Saturday, June 23, 2018 5:07 PM
Joined: 11/4/2017
Posts: 124


Thank you.  Very good advice from each of you.  Thank you for the support.
jfkoc
Posted: Saturday, June 23, 2018 5:43 PM
Joined: 12/4/2011
Posts: 17566


thinking of  you today...
Horse Lover
Posted: Saturday, June 23, 2018 9:39 PM
Joined: 11/4/2017
Posts: 124


Thank you jfkoc
llee08032
Posted: Sunday, June 24, 2018 7:11 AM
Joined: 5/20/2014
Posts: 4406


Horse Lover,

Very sorry to hear about the results of you're PET scan. I know you were feeling hopeful about participating in the study- and now to find out you are not an appropriate candidate for the study on top of the scan results has to feel terrible.

I lost hope and became depressed for a short period of time when I could no longer tolerate the Exelon patch and had a bad reaction to Namenda. Although I was not the same w/o the patch, the results of having to stop the patch eventually, for me were not as bad as I had anticipated.

Through all the hard times the members on the board here have always propped me up, supported and inspired me. Encouraged me to dig deeper in finding and sourcing my strength and spirit.

Let us help. Be encouraged. Stay inspired, source your strength and that Horse Loving spirit. Let this be all about you. Kick and scream all you like. We're here for you!


Horse Lover
Posted: Wednesday, June 27, 2018 6:00 PM
Joined: 11/4/2017
Posts: 124


Thanks LLEE.  I understand what you mean about the depression.  To top it off, I had to put my heart dog to sleep yesterday.  That has made me feel even worse.  She was my Angel and she is the one I held a lot when I first got my diagnosis.  She always gave me comfort when I needed it.
llee08032
Posted: Thursday, June 28, 2018 5:04 AM
Joined: 5/20/2014
Posts: 4406


Oh no! I am so sorry for your loss. Our pets are family and can be a great source of comfort and joy. My avatar is a pic of my dear beloved Diesel who passed on. He used to nuzzle his head into my neck and it felt like he was trying to hug me. My Bubby was just dx with heartworm. Please check in and take care.
MLJA
Posted: Thursday, June 28, 2018 8:48 AM
Joined: 6/27/2018
Posts: 3


So very sorry about your pet. They add so much to our lives. This disease is a cruel master. God bless.