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I Have Alzheimer’s or Another Dementia
New posters needed
I am here, Mimi! I have been feeling somewhat sluggish after returning from my overseas trip, so I have not been posting much.
I am over 60, but I continue to post on the YOAD board, because that is where I started. Should I move over to this board more consistently?
Do we still need to divide the patient boards based on age?
Iris, I think at first, before my time, there was just one board. Those who are diagnosed early, do have a unique set of problems. They are often still working or recently dismissed, when diagnosed. They are still apt to have children at home. So, I imagine that those folks felt they had nothing in common with the majority of folks like myself who are diagnosed at retirement age or later.
However, when you examine the content of both boards, the content is mostly about the person with dementia and not age.
And you are free to post wherever you are most comfortable.
I would just like to see some Newbies who are browsing, join us.
Mimi S!!!! You are incredible. You were diagnosed about the age my mom is now. I'm so thrilled to find your post because I recently (essentially) forced my mom to get cognitive testing. She's 76 and has been showing symptoms for about a year. She hasn't done her testing yet (and I hope it's not Alz, but it could be as we have VERY strong family history) but her argument for not being tested was "there's nothing that can be done so why bother!" I do hope that if she is diagnosed, that she will be able to stabilize her mental state and retain it for as many years as possible. I do hope she thanks me for making her get testing as I think there is hope at least for some relief.
My entire family was totally traumatized by my grandmother's (my mom's mom) experience- she began showing symptoms Alz in the late 1970s and her symptoms were not recognized until she was evicted from her apartment after letting water run out of her bathtubs and into the apt the below.
You're an inspiration and I will share your story with others! I hope you're still doing well.
Radar, I am still doing incredibly well. This time twelve years ago, I was in the middle of my diagnosis. I knew that I had not done well. I knew I had memory problems, but the inability to turn a cube to follow a pattern? That had nothing to do with memory!
I went to the final meeting fully prepared to hear a diagnosis of dementia. In my then knowledge, that was a minor state compared to the dreaded A word.
I do remember the trip home from the clinic that day. I was in shock, but made decisions contrary to most. I vowed that my diagnosis would not remain a secret. I had no thought of changing the world's opinion about what AD was.
Early Stage AD looked like. I was just so d... tired of family secrets.
It's now twelve years later and I'm still around.
I attribute a lot of my success to two things, my very early diagnosis and Best Practices.
Also in the picture and I would love some study as to what extent a drug I take in massive doses for another neurological disease has caused the progression of the AD to slow to a crawl.
Robin, I hit disregard on your Connection invitation. I have a policy of only accepting invitations from those who have the disease. I feel what I have to say should be said for all to read.
From your local library ask for a copy of The Alzheimer's Action Plan by Doraiswamy and Gwyther. it explains the seesentials of a good diagnosis. You need all parts done.
There're some things that cause dementia-like symptoms that need to be excluded. If dementia, what type. This needs to be determined before any meds should be ordered.
Dusty with us.
The PET scan with the Pittsburg compound is great. One usually needs to be in a clinical trial to get one
Welcome to our online support group, Bill. I was just diagnosed with heart disease a few months ago. I had been visiting the cardiologist for a few years, but I had been asymptomatic. Now, I have begun to have chest pain. The cardiologist says it is due to elevated blood pressure. The neurologist says he cannot rule out elevated blood pressure as an etiology in my cognitive impairment not otherwise specified.
As Mimi says, the best hope we have is Best Practices. I can attest that Best Practices has helped me over the past six and a half years that I have been following them. I am stabilized, and even better, except for the chest pain.
It's great that you do not need a heart transplant. What a load off your shoulders! Your life is not over yet. Get your legal and financial affairs in order, and then do your bucket list.. Do all the things you have put off while being on the heart transplant list. Do as much as you can.
We make use of all accommodations and adaptations to help us with memory loss and other impairments. There are many that can help.
I call us Dementia Pioneers. I believe dementia is different from when your Mom had it twenty years ago. We are the first generation to be pro-active in our fight against dementia and who are diagnosed early. Just about every treatment and tip I know I have learned on the pages of these message boards.
Please keep reading, Bill, and keep coming back. Write down your user name and password and keep it close by so you cannot be blocked out. Keep posting.
Bill, learning to play the piano is on my bucket list. Appreciation for music is one of the aspects that lasts a long time with us. Play and sing as much as you can! We used to have a great music thread on the old board. Have you seen this video, "Revived by Music"?
A most hearty welcome to you. We are so glad you found us.
yes you’re understand here and you can say whatever you feel like saying.
You really did a fantastic job fighting this while you still had a job.
I love Colorado. I’ve kids, grand and great grand in the Denver area. I’ll be out visiting there in a few months.
How are you doing living by yourself? is there anyone close that can check on you?
I still live by myself but live in a town where the neighbors are close and do check on me.
I’m glad you have your dog. If I forgot, my dog would pick up the empty dish and drop it once or twice. Then he’d check out the couch to see if I heard. Oh yes, he let me know.
Do you know about the Best Practices. Do make them your motto:
1. Take meds as prescribed.
2. Strenuous physical exercise. If you’ve been a couch potato, start slowly. And yes, you’ve had a lot of snow there so you may have to do jumping jacks or something in the house. Strenous physical exercise build new brain cells.
3. Varied mental exercises. Did you used to play an istrument? Write you biography. Do puzzles. Just do lot of different things.
4. Mediterranean Diet. Google it. I also take Omega 3 and antioxidants.
5. Living in a small tow, you may to work on getting social. It doesn’t have to be with a large crowd. Do you have a fried or two in town?
Do stay in touch. So glad you found us.
Welcome to our online support group, Alie. Here is where you can write whatever is on your mind and heart. Someone here probably has the same thoughts. We share with each other how to live with dementia. I call us Dementia Pioneers, because we are the first generation pro-actively living with and treating dementia in the early stages.
My own diagnosis is cognitive impairment not otherwise specified. I have been on Exelon patch and Namenda for over six and a half years, and they are helping me. I also follow the Best Practices that Mimi introduced us to.
My memory symptoms actually began in 1987, when I was 37 years of age. I am now 65 years. I too, live alone, with my four cats. I try to keep a month's supply of cat food and litter in the house, in case I cannot get out to the stores. I also have lupus and other diseases, which limit my mobility.
I have found wonderful support among my fellow patients. I hope you will too. Please keep reading the boards, and keep posting. We are all here to help each other, Alie.
Alieje, I really don't see how you were able to do it, stay working for so long, but good for you. I also live in a small mountain village. The perm population is here around 1300. Very little traffic. Everyone knows everyone type place. A few months ago I had to go to the big city to see my heart doctor, and I got lost coming home. The traffic drove me crazy and I got lost. Took almost 2 hours longer for me to get home. I refused to stop for help, because I wasn't sure they would understand me or that I would understand them. I got home ok, just took a long time. I absolutely hate confusion and chaos, so I know the feeling. Went to a Christmas party last night with my wife, large thing, and I ended up sitting at an empty table at the far end of the room. It was a community type party, so it was in the American Legion House, which just got newly rebuilt by the town as a community center. Nobody around here knows about me having trouble, other than with my heart, other than my wife that is. There are number who suspect, I guess.
What amazes me is how long so many people seem to be able to live independly with Alz. I started with minor symptoms about 5 to 6 years ago, and I still don't appear to most folks to have any problem. I wonder how long I can expect to at home without ruining my wife's life. Just wondering.
Happy new week to everyone.
What amazes me is how long so many people seem to be able to live independly with Alz.
I wonder how long I can expect to at home without ruining my wife's life. Just wondering.
One of the benefits of following Best Practices is the ability to live independently for a long time.
I believe it is not a given that patient with dementia or cognitive impairment ruin someone else's life. It will be necessary for ALL involved to ACCEPT that there will be CHANGES. But if someone is selfish and reacts to changes negatively, then lives will be ruined.
My biggest fear is being under the control of someone who is negative and bitter and not willing to provide for my changing needs if I cannot speak and do for myself. Mimi and others are always promoting Naomi Feil and Teepa Snow, who have videos and other information about enhancing communication between the patient and the care partner.
From reading the boards, it appears to me that many patients are miserable, living with their caregivers, whom in some cases, appear to be their wardens.
I would rather live in a one-room studio apartment on my own, than live in a fancy house with someone who is hostile to me.
The good thing about this board that I have always loved, is that we work together to discover what works for us, to enable us to have better lives with dementia or cognitive impairment.
Welcome back FF Wife.
Sounds like you need to figure out a better system for remembering. Even with the best of symptoms, we still goof.
What exercise are you getting these days? Lots of it will sometimes help the worries.
Does your sate have any local support groups for you or even a state wide call support group?