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Newly diagnosed
Horse Lover
Posted: Wednesday, November 8, 2017 9:44 AM
Joined: 11/4/2017
Posts: 16


Hello everyone. I was just diagnosed with AD in August. I'm scared and I need some... any advice that you could give
Iris L.
Posted: Wednesday, November 8, 2017 1:42 PM
Joined: 12/15/2011
Posts: 14523


Welcome to our online support group, Horse Lover.  I'm sorry that you have received that diagnosis.  This will be the greatest challenge of your life.  We will gather around and help you.  We'll give you the benefit of our experiences, and let you share your own experiences and vent and do whatever you have to do to get by.  Please feel free to post on this board and on the Younger Onset board, where most of us post.  Please tell us more about yourself.


Iris L.


Mimi S.
Posted: Wednesday, November 8, 2017 5:41 PM
Joined: 11/29/2011
Posts: 5961


Welcome to our world, Horse Lover. We're so glad you found us.

The following link will take you to information from the Alzheimer's Assoc:

https://alz.org/cnfl/in_my_community_101626.asp  If the link doesn't turn blue, copy and paste.

What was the process of your diagnosis?  Any idea how long along the line you are?


Winsor
Posted: Thursday, November 9, 2017 6:22 PM
Joined: 10/25/2016
Posts: 2


For awhile I spent time being mad...but then I figured I'd try to "make the best" by reading a lot on what I can do to manage (to whatever extent I will be able to).

The research suggests that these can help manage:

Exercise 150 minutes a week of moderate intensity (inc.c weight work & balance exercise)

Stay connected with people (I try to do that every day, but a lot of the time I don't want to)

Healthy diet...esp cutting sugar & add Omega 3 fats, fruit, veggies & white or oolong tea

Mental stimulation:learn new things...practice piano, play Scrabble with your spouse, visit new places.

Get quality sleep.

Manage stress (meditation is good for that).


Iris L.
Posted: Thursday, November 9, 2017 8:30 PM
Joined: 12/15/2011
Posts: 14523


Thanks for sharing, Winsor.  It's great when we can help ourselves.


Iris L.


Horse Lover
Posted: Thursday, November 9, 2017 10:07 PM
Joined: 11/4/2017
Posts: 16


Thanks Winsor.  I'll try to do these things.  Cutting sugar will likely be the hardest for me. I think I'm addicted to sugar. I currently have a concussion, so I'll likely chat more when I stop having migraines
Horse Lover
Posted: Thursday, November 9, 2017 10:12 PM
Joined: 11/4/2017
Posts: 16


II had blood tests, MRI and spinal tap. Spinal tap showed that I am likely in very early stages. AD runs heavy in my family. I'm going to be in a research study starting in February. The study will pay for a PET scan.
Horse Lover
Posted: Thursday, November 9, 2017 10:15 PM
Joined: 11/4/2017
Posts: 16


TThanks to all of you for your advice. I current have a concussion, so I'll have to get on here more at a later date.
Mimi S.
Posted: Friday, November 10, 2017 9:12 AM
Joined: 11/29/2011
Posts: 5961


Hi again, Horse Lover.

Did you also have a few hours long neuro-psych?  That's important for screening for depression and figuring out the type of dementia. From your library ask for: Doraiswamy and Gwyther of Duke Univ, The Alzheimer's Action Plan. They may have a later book. 

Did you have symptoms before your concussion?  Did they worsen after?

Fantastic that you are enrolled in a clinical study. You get the best care.  Can you tell us more abut the study?


BadMoonRising
Posted: Saturday, November 11, 2017 2:43 PM
Joined: 4/22/2017
Posts: 61


Horse Lover,

What is the name of the study? Several of us have undergone amyloid PET testing through the IDEAS study.  Best of luck with the PET and I hope your headaches soon stop.


Horse Lover
Posted: Saturday, November 11, 2017 5:10 PM
Joined: 11/4/2017
Posts: 16


I don't think I did anything several hours long. I answered a lot of questions and it addressed depression.  Also, I'm already being treated for depression. That, as well as my memory problems have become worse since the concussion.
Horse Lover
Posted: Saturday, November 11, 2017 5:16 PM
Joined: 11/4/2017
Posts: 16


I don't have much info yet about the study. I think it has something to do with genetics. The doctor is a leading researcher on alzheimers.  I checked on the computer and she has been involved in a lot of genetics research. She said she will tell me more about it when she starts the study. She also said the studY would pay for the pet scan
Mimi S.
Posted: Saturday, November 11, 2017 8:13 PM
Joined: 11/29/2011
Posts: 5961


Hi again,

I wouldn't worry about whether or not you had the neuro-psych. If the study thinks you need one, they'll get it.  There should be no expense to you.  Some studies even pay transportation costs.

I am still concerned about any connection between your concussion and cognitive issues. This needs to be explored.  Try asking when you go to the appointment for your  clinical study.
 
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