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Newly diagnosed
Horse Lover
Posted: Wednesday, November 8, 2017 9:44 AM
Joined: 11/4/2017
Posts: 79


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: 15195


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: 6162


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: 15195


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: 79


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: 79


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: 79


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: 6162


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: 136


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: 79


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: 79


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: 6162


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.
surfergirl
Posted: Sunday, December 31, 2017 6:17 PM
Joined: 1/23/2012
Posts: 695


Hi Horse Lover,
I am not a patient but am also a horse lover and owner,is your concussion horse accident related? I am having to give up my horses for financial reasons .But if you own a horse or can be around them, there's nothing better for your health. The outside of a horse is good for the inside of a man, [or of course woman. Wishing you all the best. One horse lover to another.

Surfergirl and oh yes I love the ocean as well


Horse Lover
Posted: Tuesday, January 2, 2018 7:08 PM
Joined: 11/4/2017
Posts: 79


Surfer Girl.  No my concussion was caused by me tripping as I was walking up some steps.  My boot caught on the top edge of the step.  I'm sorry to hear that you have to give up your horse.  I know how deeply that hurts.  I have 4 horses.  I also love the Ocean.  I'm leaving on the 13th to go to Venice, Florida to visit my daughter and family.  I'll be 10 minutes from Venice Beach.  I'm traveling by myself and my husband won't go in the winter because he is afraid that if we hired someone to take care of the horses, they might not do a good job.  We both know how quickly that could become a crisis.  Anyway, I'm hoping that this is not the last time that I can travel alone.  Have a great day and I hope you live near the Ocean.
abc123
Posted: Wednesday, January 3, 2018 8:59 AM
Joined: 6/12/2016
Posts: 149


To Horselover & Surfergirl,

I am also a horse lover! Have been all of my life. My parents told me I used to ride a broom stick up and down the driveway making horses sounds when I was a very little girl! When I was 7 they bought me my first horse. Its a seed of passion that God planted in my soul! Oh yes! The outside of a horse is good medicine for man! I miss the smell of hay and oats. I miss the smell of saddle soap. I miss grooming my horses and combing their mane & tail. I always had the best groomed horse around! 

Gotta go. Grandbaby just got here


abc123
Posted: Wednesday, January 3, 2018 3:16 PM
Joined: 6/12/2016
Posts: 149


Dear Horselover, I have no advice to offer and I apologize for that. But I am a woman who has a deep faith and I pray a lot. I will be praying for you.

Sincerely,

Susan


abc123
Posted: Wednesday, January 3, 2018 3:18 PM
Joined: 6/12/2016
Posts: 149


To SurferGirl,

I'm so sorry you have to let go of your horses. My heart is heavy for you for!

Sincerely,

Susan


no way!
Posted: Thursday, January 11, 2018 6:32 PM
Joined: 1/11/2018
Posts: 2


II am having a neuro-psych in March. This alone is causing me even more anxiety. Exactly how is this done? Mine is going to take 6 hours. What is involved and how is it accomplished?
julielarson
Posted: Friday, January 12, 2018 4:49 PM
Joined: 9/30/2015
Posts: 1156


No way, there are many tests that they will administer to you.. You just do your best and they will be able to tell you if it is dementia or depression or other things that are contributing to your memory problems.. Do not get upset with yourself if you struggle it is important for them to get a good picture of what is going on.. You will go through the test and they will score it and at a future appointment they will go over the results with you.. Oh and before any testing happens at the appointment for the test the psychologist will ask you questions about yourself and your life and get a good picture of what you are like as a person.. I went through the testing twice and both times it was not a bad experience but I tell you I was drained after the testing was complete.. I wish you luck on your testing..
Lisita
Posted: Thursday, April 5, 2018 5:16 PM
Joined: 4/3/2018
Posts: 14


Dementia is a livable situation . It is scary but we will survive. Life is a gift and we must keep involved with friends, family, church, neighbors, and pets.  This will help us to go own. We do have a choice , to succumb to the disease or plunge into life!  Lisita
Lisita
Posted: Thursday, April 5, 2018 5:19 PM
Joined: 4/3/2018
Posts: 14


Horse lover pet study what is that
Iris L.
Posted: Thursday, April 5, 2018 7:35 PM
Joined: 12/15/2011
Posts: 15195


Lisita, a PET scan is one type of imaging study that seeks to locate areas in the brain which have decreased glucose consumption.  It is a radioactive study.  The PET scans usually are not covered by insurance.  Here is more information about the PET scan.

https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers/art-20048075?pg=2


Iris L.


Smirky
Posted: Friday, April 20, 2018 4:43 AM
Joined: 3/26/2018
Posts: 1


Hi, my name isDonald E and I have ALZ as well. I was diagnosed about 4 years ago, I’m 64 years old now. It is a very scary thing to hear, but you can live with it and do about anything you want. Get involved with a group in your area that support you.
 
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