Caregiving resources for every stage of the disease.
RSS Feed Print
Newly diagnosed
Horse Lover
Posted: Wednesday, November 8, 2017 9:44 AM
Joined: 11/4/2017
Posts: 122


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: 15457


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: 6630


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: 15457


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: 122


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: 122


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: 122


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: 6630


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: 236


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: 122


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: 122


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: 6630


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: 778


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: 122


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: 254


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: 254


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: 254


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: 1155


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: 58


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: 58


Horse lover pet study what is that
Iris L.
Posted: Thursday, April 5, 2018 7:35 PM
Joined: 12/15/2011
Posts: 15457


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: 4


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.
Cookie Cool
Posted: Thursday, May 10, 2018 9:10 AM
Joined: 5/9/2018
Posts: 1


I was diagnosed with Alzheimer's last September. I've just joined Alz. Connected and looking for some connections in the Alheimer's community. I live in Santa Fe, New Mexico, where I worked as the editor of the local newspaper's weekly arts and entertainment magazine.

 


Iris L.
Posted: Thursday, May 10, 2018 12:43 PM
Joined: 12/15/2011
Posts: 15457


Welcome, Donald E and Cookie Cool.  I am glad that you joined Alzconnected even though I'm sorry that you have to be here.  Your lives are changing but they can still be fulfilling.  I have a diagnosis of cognitive impairment not otherwise specified. 

Please feel free to post on this board or on the Younger Onset board.  These are patient boards, but you can post on any board on this site.


Iris L.


Mimi S.
Posted: Thursday, May 10, 2018 7:56 PM
Joined: 11/29/2011
Posts: 6630


Hi Cookie Cool,

Welcome to our world. I'm so glad you found us. 

I love Santa Fe. Used to subscribe to El Palacio, until my eyes gave out. Also visited the missions in the area.

Do tell us more about your process of diagnosis.

Do call our help line: 1-800-272-3900 and ask about support groups in your area for those diagnosed. Unfortunately they are few and far between. Most folks are diagnosed too late to actively participate in a group and others are in denial or don't want to identify themselves.  So ad because we need personal support.  Perhaps your local chapter (ask for the local # whe you call the hot line. Call during business hours and make sure you are speaking with the local chapter. National will pick up after a certain # of rings.  Perhaps the local chapter can connect you with someone in your area.  Some localities ave memory Cafes where people with dementia meet to just socialize.  It's a wonderful idea!!!

We will wait to hear more from you.


Mo42
Posted: Monday, May 21, 2018 7:05 AM
Joined: 5/20/2018
Posts: 13


Winsor,   I'm Mo42.   I just posted on here for support but I'm not getting much response.     This is what my sister posted for me so she could get me started, but only one mona responded,   I guess not many who are diagnosed are able to post, but we need support,    here is my post

Sorry, it is not posting for me,   the .Heading says I use to be on here

I hope you will reach out to me,   I'm sorry both of us have to be here

MMo42


Mo42
Posted: Monday, May 21, 2018 7:32 AM
Joined: 5/20/2018
Posts: 13


Cookie,   I just joined because i couldn't find SUPPORT,  my Sister Biddie  set me up with a tablet she posted intro for me on this board but only Mimi replied, I'm scared I need support ,   I'm 75yr,  so I'm slow on using a new device.   I hope someone will reach out to me.  I was diagnosed with MIC , mild cognitive impairment.   Donepezil  ,makes me feel like I'm in a fog, hard to get around.I hope I will hear from someone,  I have been reading a lot because, their are no support groups here in NJ      

Nice to meet you Cookie


Mo42
Posted: Monday, May 21, 2018 7:34 AM
Joined: 5/20/2018
Posts: 13


Cookie,   I just joined because i couldn't find SUPPORT,  my Sister Biddie  set me up with a tablet she posted intro for me on this board but only Mimi replied, I'm scared I need support ,   I'm 75yr,  so I'm slow on using a new device.   I hope someone will reach out to me.  I was diagnosed with MIC , mild cognitive impairment.   Donepezil  ,makes me feel like I'm in a fog, hard to get around.I hope I will hear from someone,  I have been reading a lot because, their are no support groups here in NJ      

Nice to meet you Cookie


Mary Pat
Posted: Monday, June 11, 2018 5:06 PM
Joined: 6/11/2018
Posts: 1


I was diagnosed with Early Alzh, FTD. , in May 2007.   I was started on Namenda and Exelon starter packs which gradually increased to Namenda 10 mg,  2 times daily and Exelon 4.5 mg, 2 times daily.  My journey to now has been filled with ups and downs , but I am doing quite well mentally.  I still drive, write checks and take my medications ect.  I take a variety of vitamins which I feel have helped me.  I have written some children's stories . Two have been published along with two books of poetry.    I read that Exelon (or Aricept},which have a similar action in the brain need to be taken with Namenda, to be affective. Namenda affects the brain in a different way.  The meds have helped me  a lot and I still have good cognitive control.  I have had 3 Pet Scans over the years ordered by my Dr and my insurance paid for them. I have Medicare and a supplement ins.  There is a lot of Info on the internet.  I researched and found ways to help my self.  I hope this post will help some of you.  Mary Pat
Mimi S.
Posted: Monday, June 11, 2018 6:34 PM
Joined: 11/29/2011
Posts: 6630


Welcome to our world, Mary Pat. I'm so glad you found this site.

Three PET scans. Were they the glucose type that shows amyloid? And did it show in yours?

And an active writer! Fantastic!!!

Are you aware of what some of s PWD  call Best Practices?

1. Take meds as directed.

2. Increase physical activity. Goal to get heart pumping at a faster rate.

3. Increase cognitive activities. Writing is great. A variety is best.

4. Socialization, maintain or increase. We usually don't like large crowds  or a lot of noise.

Mediterranean diet. Limit alcohol and no smoking!

Do stay with us.

 


linda52766
Posted: Friday, June 22, 2018 2:34 PM
Joined: 6/22/2018
Posts: 6


I was just diagnosed this week. Kind of scared. Hoping to hear from some of you to help me through this. I know I would like to try anything available to slow this down. I have not received the Aricept yet. Has anyone had any issues with this medicine? Thank you!
Mimi S.
Posted: Friday, June 22, 2018 6:52 PM
Joined: 11/29/2011
Posts: 6630


Dear Linda,

Take a deep breath.
Welcome to our world. I'm so glad you found us.

 

Do tell us the process of your diagnosis. A complete work up, including complete physical, blood work up, brain scan and several hour long neuro-psych must all have been done.
Some folks have problems with Aricept. Begin with a 5 mg, or even less. Some folks have sleep problems; take last thing at night.  Some folks have GI issues  a lactose3 free diet worked great for me, but you have to read labels.Feta cheese with cow's milk as the main ingredient! I think there was soy milk ice-cream with cow's milk as the main ingredient, etc. Milk chocolate ins out (took me a while to figure that out, but dark is OK.)
Best practices; research has shown it can slow down the progression.
1. Take meds as and when directed.
2. Increase physical exercise. You want to get that heart pumping.
3. Cognitive exerecise. A variety is best. Forget paying for those fancy courses.
4. Mediterranean diet  Search.  Limit alcohol and no smoking.
5. Maintain or increase socialization.  We usually do not tolerate noise and large crowds.
Do get acquainted with your nearest Alz. Assoc. office. Call our help line: 1-800-272-3900 for the number. Be active. Ask about support groups and Memory Cafes.

 

And do stick with us!!!!!

 


 
× Close Menu