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I Have Alzheimer’s or Another Dementia
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.
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?
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).
Thanks for sharing, Winsor. It's great when we can help ourselves.
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?
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.
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.
Surfergirl and oh yes I love the ocean as well
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
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.
I'm so sorry you have to let go of your horses. My heart is heavy for you for!
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.
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.
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.
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.
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
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
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.