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Overwhelmed
dbbwlk
Posted: Monday, June 1, 2020 5:33 PM
Joined: 5/31/2020
Posts: 7


I was just diagnosed with dementia from mild Alzheimer's four days ago. I am overwhelmed by just about everything. I am 63.

These message boards confused me too. Seems like very good message boards but alot to digest at first. I dont know where I should post a message like this one.
Any directions would be greatly appreciated.
Iris L.
Posted: Monday, June 1, 2020 8:35 PM
Joined: 12/15/2011
Posts: 16642


Welcome dbbwil.  I'm sorry you received that diagnosis.  There is much that you can learn about your illness.  Much of what you read in the public about dementia and Alzheimer's Disease is uninformed.  Read credible information on this site and the alz.org site.  Post questions when you need to.  The patient boards are somewhat slow, but someone will respond.  I have been a member for over ten years.  I have a diagnosis of cognitive impairment not otherwise stated.


Iris


dbbwlk
Posted: Monday, June 1, 2020 9:07 PM
Joined: 5/31/2020
Posts: 7


Thank you Iris. The public were not alone in ignorance. I was taken aback by the lack of knowledge (like none) I have about the disease. These boards will help that hopefully
DebbieKW
Posted: Friday, June 12, 2020 3:42 AM
Joined: 4/30/2019
Posts: 4


Hi my name is Debbie and I was diagnosed about a year ago (I think). Lol. I find it difficult to use this site also. I was hoping for something more like an IG chat area that comments and sharing were easily posted and seen. In my mind I thought there would be many newly diagnosed Alz who wanted to converse with others. Cant seem to find this opportunity.  

I am 62 yrs old. I was diagnosed with Alzheimer's,  but I've also lived for 32 yrs with a rare neuromuscular autoimmune disease called Polymyositis. My basket is full. 


jcalz2019
Posted: Friday, June 12, 2020 5:14 PM
Joined: 9/2/2019
Posts: 7


I was diagnosed with early onset Alz. a year ago today, but I showed signs a year or more before diagnosis. I am 57 years old, both my parents have ALZ. My mother passed after 61/2 years  in 2017 from complications from ALZ. My father has had ALZ going on 10 years and is currently on hospice. I was diagnosed after about a year of testing, I had APOE 4 gene from both of my parents  and then had a spinal tap done and and my fluid was analyzed and confirmed the diagnosis. 

I haven't worked or driven for a long time. My wife and I were the caregivers for my parents early on but my dad and mother has had around the clock CNAs for around 5 years now.

Unfortunately I have had a lot experience as caregiver and unlike most people I know what to expect the rest of my life from taking care of my parents. Everyone is usually willing to answer your questions my self included.

WELCOME


Iris L.
Posted: Friday, June 12, 2020 11:15 PM
Joined: 12/15/2011
Posts: 16642


Welcome Debbie and jc.  This board and the Younger Onset board used to be full of patient posts.  I suggest that you new members continue to post in order to be supportive of each other.  There are a few long-term patient members who might respond.  Also, some caregiver members may respond.  


There is also a chat room available to patients for real-time conversations.  One of you will have to post a time to chat, and hopefully others will join in.


Debbie, I am living with systemic lupus, which is why I have a diagnosis of cognitive impairment not otherwise specified. I dealt with myositis for many yrears until I got into remission.  


Iris L.


BadMoonRising
Posted: Saturday, June 13, 2020 5:57 PM
Joined: 4/22/2017
Posts: 323


Hi everyone!

I pop in now and then. My diagnosis is "Multi-Domain Mild Cognitive Impairment presumably due to Alzheimer's Disease" or "Early stage of AD".

I did have a positive Amyloid PET which is why the presumption of AD is added to the MCI diagnosis. I was in my late 50's when I was initially diagnosed with cognitive impairment.

The initial diagnosis is shocking, for sure. It may take quite a while for it to sink in. Feel free to ask questions or share concerns. Or complain. That sometimes helps, too.


dbbwlk
Posted: Monday, June 22, 2020 6:32 PM
Joined: 5/31/2020
Posts: 7


Hello Debbie, nice to hear you. I agree about the message boards and lack of chat. Anyway good luck to you.
BadMoonRising
Posted: Saturday, July 4, 2020 11:26 AM
Joined: 4/22/2017
Posts: 323


There have been complaints throughout the years about the functionality of the message boards. There HAS to be a way for the Alz Association to make the boards as user friendly as the gazillions of boards used by people who do not have cognitive issues. This needs to be remedied. I'm going to try and advocate for this over the next month or so. In the grand scheme of things, what do I have to lose?
flyingEagle1
Posted: Sunday, July 5, 2020 2:26 AM
Joined: 7/8/2014
Posts: 15


HI I'm new to board also it is confusing to me as well, but will see if I can handle it. I was diagnosed 7 years ago with vascula Dementia. A month ago i was told that there is a small chanhe in brain volume. Whatever tat mean. I'm still waiting to see Neuro. I have my problems. My son & hubby live with me for what its worth. I'm also bipolar. I'm trying to decide if I should CBC oil. Don't know a lot about it. Good days & bad many sleepless night.
flyingEagle1
Posted: Sunday, July 5, 2020 2:30 AM
Joined: 7/8/2014
Posts: 15


HHow do u get to chat room. Im new here with Vascular dementia & Bipolar.
Michael Ellenbogen
Posted: Sunday, July 5, 2020 7:24 AM
Joined: 11/30/2011
Posts: 3493


I wish you the best of luck with that one BadMoonRising. I have connection here and tried to do it for about 10 years. They did make some minor changes but most of them went no were. The said it was a money issue and i went to MIT to get them to volunteer their time to help and they agreed to do so. But AA did not want to give them access to the system. Go figure the best of minds in the world willing to help them at no cost. I gave up as they are so stubborn their ways and they think they know what is best internal but external it very different. Please do not let me discourage you as you may have more luck then I. Wish you the best as it is Truly needed. Came from IT background and this has to be one of the worst sites I have ever seen by far.  They definitely do not have the expertise in house and it is mostly outsourced. 


Iris L.
Posted: Sunday, July 5, 2020 9:21 PM
Joined: 12/15/2011
Posts: 16642


FlyingEagle, if you go to the main dashboard with all the message boards, you will see a link for "chat room."  Click on that, and you will see three chat rooms.  There is a chat room for PWDs (persons with dementia), a chat room for general caregivers and a chat room for spouse and partner caregivers.  Any member may enter and participate in any chat room.  


The chat rooms used to be very well utilized in the past, but not so much now.  If you want to chat, it would be a good idea to post the day and time and time zone that you want to chat, so other members will know when to meet you.  You might also want to post a topic of what you want to chat about.  


I used to chat a lot, and I really got a great deal of encouragement from the other members.  I hope you can find the same encouragement.


Iris


BadMoonRising
Posted: Sunday, July 12, 2020 7:14 PM
Joined: 4/22/2017
Posts: 323


Hey, Michael

I have an idea that is somewhat similar to yours. I started working on it the last time I posted but haven't yet finished my preliminary "research".  If I can just follow through...



leuqos
Posted: Wednesday, July 15, 2020 12:54 PM
Joined: 6/8/2018
Posts: 2


Hi: I'm so glad to have found a discussion/chat opportunity. I have MCI and hope I can learn all I need to know before this disease takes me to the next stage!

Do most of you utilize outside caregivers who come into your home? From what I have read, being a caregiver for a loved one with dementia is a full-time job - wow!

I am looking for a good support network where I can turn for advice and support - also to answer all the many questions that come up.

From the posts I have read, there seem to be many compassionate, caring  and supportive folks here on these boards. Thank you so much. This is a very frightening disease. I try to stay in the moment, but it is hard not to look ahead!

Have a great day. Stay safe!


Iris L.
Posted: Wednesday, July 15, 2020 2:49 PM
Joined: 12/15/2011
Posts: 16642


Welcome leuqos.  I too have a diagnosis of cognitive impairment.  I learned most of what I need to do for myself from the members in these webpages, both patient and caregiver members.  Most of the older patients no longer post. 


 It would be great if you and the other new members could become support for each other.  Post about your concerns and get some dialogue going.  Feel free to begin new threads in this "I Have Alzheimer's" board or the Younger Onset (YOAD) board.  


This can become an invaluable place for knowledge and support that you won't find in the outside world.  Why?  Because the people here are living with MCI and dementia, not just reading about it from a book or magazine article.  They will tell you the truth from their own experiences.  This is what makes it invaluable.  


So again, I urge all the new members to post and to respond.  Be support for each other.  


Iris


leuqos
Posted: Sunday, August 2, 2020 8:16 PM
Joined: 6/8/2018
Posts: 2


Thanks, Iris, for your encouragement. 

Is it possible on these boards to send private messages to members? Other boards have that option; I find it very helpful to establish relationships with specific people. 

Thanks. 

 


Iris L.
Posted: Monday, August 3, 2020 12:02 AM
Joined: 12/15/2011
Posts: 16642


Hello leucos.  Yes, it's possible to send private messages.  Nevertheless, I believe it is most helpful to share problems and concerns on the message boards.  That way, many members and lurkers can benefit.  This is because the issues we face are very common.  They seem to be unique, but that is because they are unique to PWDs.  We never have been confronted with these issues before.  Also, as I said above, the outside world doesn't understand MCI and early dementia and has no way of giving us RELEVANT advice.  There is no problem that has not been discussed on these boards.  


If you still want to connect privately, click on the member's name  and then click "invite" when the profile comes up.


Iris


Farmerswife
Posted: Monday, August 3, 2020 11:08 AM
Joined: 8/3/2020
Posts: 2


Hi, my name is Charlotte and I am currently being assessed for early onset Dementia. I am 52 years old and have had issues for the past 3 years that have gotten progressively worse. I’m terrified right now. I don’t know what to expect. I have a 2 year old, 4 grown children and 5 grandchildren. I’m scared for them and I’m scared for me.
Michael Ellenbogen
Posted: Monday, August 3, 2020 11:27 AM
Joined: 11/30/2011
Posts: 3493


What makes you think its some kind of dementia? 


KawKaw
Posted: Monday, August 3, 2020 11:42 AM
Joined: 11/22/2019
Posts: 335


Welcome Charlotte!

I am sorry for your diagnosis (dx).  These message boards are a good place to get information, give and receive support, and help you navigate the new normal.

I can understand your fear and anxiety for your children and yourself.  Experiencing your condition while mothering a toddler must be very challenging.

Do you have a good neurologist?  I hope you also have a supportive primary care physician.

Is your family supportive?

My diagnosis is Mild Cognitive Impairment (MCI) at this point.  I do not know how my impairment will progress.

I know that anxiety, stress and breaks in my routine can increase my confusion and disorientation.

Life with a 2 yr old must include a lot of that!

Again, welcome.  I think you found a good place. 


Farmerswife
Posted: Monday, August 3, 2020 11:47 AM
Joined: 8/3/2020
Posts: 2


I have issues with memory, significant short term memory, I have issues with communication at times. I was a paramedic for 10 years and although I could do the job I could not take exams because I couldn’t communicate the answers. I lose things in my home constantly. Words escape me often. The list goes on and on. When I was doing research on early onset dementia, I have 6 of the 10 symptoms. I was tested already tested for vitamin deficiencies and as of right now it is fine.  I have more appointments coming up with a neurologist and GP to discuss other issues.
Iris L.
Posted: Monday, August 3, 2020 2:41 PM
Joined: 12/15/2011
Posts: 16642


Welcome, Charlotte.  I'm glad you are still in the diagnostic process.  The diagnosis of the dementias is a rule-out diagnosis, after all other possible treatable and potentially reversible causes of memory loss have been ruled out.  This requires an extensive work-up by the primary care doctor, the neurologist, the neuropsychologist, and possibly other practitioners.  Also, progression of the cognitive impairment must be documented. Be aware that stress and anxiety worsen our impairments.  Unfortunately, in these Covid-19 avoidance times, we are all extra stressed and extra anxious.  While you are awaiting the conclusion of your evaluation, take whatever steps uou can to relieve stress and get good sleep, as much as you can.  It will really help you.    Please keep in contact and let up know how you are doing.  


Iris


kdickerson50
Posted: Wednesday, August 5, 2020 2:23 AM
Joined: 8/5/2020
Posts: 1


Hi all my 87yr old Mom was diagnosed just yesterday with Vascular Dementia I am looking for ideas, experience and advice on mitigating some of the challenges that we as a family face. I am  like most in uncharted territory with all of this. I’ve been up since 1:50 am now 3:15 am I simply cannot sleep. I’m trying to figure out how I can be of any help to my Mom and family by gathering  as much to inform us all. Any guidance or advice on what to expect and how to prepare for and deal with what will undoubtedly become new challenges would be greatly appreciated
Niigi
Posted: Thursday, August 6, 2020 7:26 AM
Joined: 8/3/2020
Posts: 2


I am new on here also. I am 63, was diagnosed in 2007 with MCI due to five years of heavy cancer medications. A month ago, ( I think, lol) I was diagnosed wit early stage Alzheimer’s. My daughter made me make a doctor appointment and she told on me. I noticed many unexplainable things over the past couple years. I want to talk/chat with others that are where I am. What happens to others, how does this progress, what to expect?

I have tried to do my own research but have only found stuff about the different stages. I am guessing that I’m stage 3.

Anita


Niigi
Posted: Thursday, August 6, 2020 7:38 AM
Joined: 8/3/2020
Posts: 2


Hi farmerswife, 

I’m new on here, diagnosed a month ago with Alzheimer’s. I was diagnosed with MCI in 2007. I had breast cancer and underwent therapy that shut down my estrogen and thought that was the cause. I couldn’t remember my passwords, hard time with remembering vocabulary and always misplacing things. I would run into people and wouldn’t be able to remember them. I was good at covering and coping. The past two years, it has gotten worse. I wish that I would have been given the Alzheimer’s med back in 2007, maybe it would have held it back more. I take Memantine.

I hope for you to have a doctor that will give you the med now. Good luck on this new journey.

Anita


KawKaw
Posted: Thursday, August 6, 2020 8:22 PM
Joined: 11/22/2019
Posts: 335


Welcome Niigi!

I am not functioning at my best this evening, so this will be a short welcome to the message boards.

I was a caregiver for my mother who had advanced dementia.

I am planning on becoming a caregiver for my father-in-law who is experiencing some dementia in the next few months.

I am also dealing with MCI and am in the process of trying to discover more about my condition, what the future might hold.

Must go rest now, so take good care and welcome again!


Iris L.
Posted: Thursday, August 6, 2020 9:46 PM
Joined: 12/15/2011
Posts: 16642


Welcome Niigi.  I'm sorry for your diagnosis but glad you've found this site.  I hope the medication is helping you.  Has your neurologist mentioned adding Aricept or Exelon patch to the memantine?  I have been on Exelon patch and Memantine for over ten years.  I hope you are staying safe and avoiding Covid-19.



Iris


AggieMac
Posted: Sunday, October 11, 2020 1:17 PM
Joined: 10/10/2020
Posts: 2


Hi I am Aggie ang this is my first message to Alz connected to Overwhelmod Room.  I am 75 years old..my  stroke happened 8 years ago.  I suffered a hemorragic stroke which damanged the area of reading,words,and thinking...I wounered if I woulded if I would not be my humanity again! But thanks to ny twin soctores,excelent re-habs, and my excellent Family!  By daugheter, Kelly, has set up this excellent alz connecting
Iris L.
Posted: Monday, October 12, 2020 11:45 AM
Joined: 12/15/2011
Posts: 16642


Welcome AggieMac.  I'm sorry about your stroke.  It looks like you have a wonderful group of supportive people around you.  You are blessed!  

 

Iris


KawKaw
Posted: Tuesday, October 13, 2020 7:06 PM
Joined: 11/22/2019
Posts: 335


Welcome, AggieMac!
I am sorry also for your stroke and difficulties.  It sounds like your family has rallied around you, and you had access to useful rehab as well.

 


AggieMac
Posted: Wednesday, October 21, 2020 8:51 AM
Joined: 10/10/2020
Posts: 2


good morning...Thank You..reading the discussiones from all is helpfull!
missymoo
Posted: Friday, October 30, 2020 9:50 AM
Joined: 10/29/2020
Posts: 3


We are all frightened, coping with the confusion is a task in itself. It sound as though you are surrounded by family. How fortunate for you. I live in Rancho Mirage, CA. and you can reach out anytime to chat with me.

Nancy

nancy.cooper@rogers.com


Arrowhead
Posted: Sunday, November 1, 2020 11:00 AM
Joined: 7/17/2020
Posts: 39


If you haven't already, get all of your legal work done. Will, Power of Attorney, HIPPA, and Medical Directive. You may consider a Trust.