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Is anyone going to post on Early Onset forum again?
Canada111
Posted: Saturday, November 9, 2019 6:53 PM
Joined: 8/22/2016
Posts: 263


I will start a new thread because Alz+ is gone, and it’s now dead here since she signed off. There must be some early onset folks who still need support and friendship. Let’s  see if anyone does. I certainly do. Alzheimer’s is a very tough disease and very isolating. Is anyone feeling lonely tonight?
eaglemom
Posted: Saturday, November 9, 2019 6:58 PM
Joined: 3/7/2012
Posts: 2378


Please do post on that forum. I'm sure we have others whom will come along on that forum eventually. Let's hope some whom have been lurking will start posting.

eagle

 


Michael Ellenbogen
Posted: Saturday, November 9, 2019 7:02 PM
Joined: 11/30/2011
Posts: 2679


She is gone because people lied about her. Not sure what they felt they needed to prove when she was in need of help. I am also considering to leave. I am tired of arguing with people who defend thing on rumors and not actual facts. I don’t know why I waste my time with them instead of debating those that really matter. I wish you the best and it is sad how so many have left. To be honest with you I can not blame them. This was once a nice place and it really changed a few years ago because of certain folks.   


Michael Ellenbogen
Posted: Saturday, November 9, 2019 7:04 PM
Joined: 11/30/2011
Posts: 2679


Please also remove her name. Thanks
Canada111
Posted: Saturday, November 9, 2019 7:15 PM
Joined: 8/22/2016
Posts: 263


Michael, You are one of the good guys. Please don’t leave. Let’s keep this forum going. I’m in the dark as to what really happened but I know your intention was to help and always has been. There was so much drama around the last posts. And now silence. I’m just here to revive support for myself and the rest of us.
jfkoc
Posted: Saturday, November 9, 2019 7:29 PM
Joined: 12/4/2011
Posts: 17560


People may not be posting a lot right now but the numbers of people reading is still high.

I think a good topic might be planning ahead. Another might be a discussion of how you have worked around something that was causing you difficulty.  What do you think?


Canada111
Posted: Saturday, November 9, 2019 8:33 PM
Joined: 8/22/2016
Posts: 263


Thanks for recommending topics. 
I have no plans except to let nature and this disease take its course, and pray I don’t reach late stage. I know that’s not a very good plan but because I’m in the middle stage of this disease I am not in charge anymore. My husband will have to wing it as he’s been doing. Ability to plan is relegated to the present and immediate future now. One day at a time. I know that I don’t ever want to be placed in facility. I hope that doesn’t become necessary. I know you did not place your husband. He was fortunate you loved him so much and were able to keep him home. 

 Michael have you planned ahead? 

 

 


Michael Ellenbogen
Posted: Sunday, November 10, 2019 6:53 AM
Joined: 11/30/2011
Posts: 2679


I have all the plans in place. Unfortunately they are not my first choice. I also don’t know if they will happen as I planned. One never knows what will happen with this dam disses as it may throw curves at you that will derail them. Just need to go with the flow for the for as long as I can. Some one with dementia said this to me recently. The “help is killing me”. It is so true in so many ways. That is worse than the dementia.  

 

The good news is I finally figured out what to write on my funeral plot. Just yesterday I added “He changed the world” I think I will add more but this was a good stat as it recently came to me as I went thru some of my accomplishments. I had anther one on Friday. I just hope I can keep making them happen. That is the only thing that keeps me going. 

I am glad you are finnaly at peace. 


jfkoc
Posted: Sunday, November 10, 2019 12:53 PM
Joined: 12/4/2011
Posts: 17560


My husband was at home for all of his illness for two reasons. First because it was one thing that I knew he wanted and two because it was possible. Plan B was always in the ready.

Having been  a caregiver and a person of some years has made me keenly  aware of what can happen to a person needing help. 

I intend to be very specific on what I want in my future. I will have plan A plus plan B and perhaps plan C.

I want to stay in my home is A. I have selected two acceptable placements for Plan B and neither of them are close to family. Both have highly trained staffs. I prefer to be with trained people rather than a weekly pop in from a child. 

My children  have picked out item that they want...the rest I do not care about or will give away now. 

A trust has been in place for years as has a will, medical and financial DPOAs and a living will. I am looking into POLST. 

I think it was extremely important to have a long hard talk with my DPOA agents about my future. I do not think it would be fair to make them guess about what my choices would be. This will include what I want done with my remains

Michael... a share. I am named for a great grandmother who taught herself Greek when she was in her 80s. Her tombstone says She hath done all she could.


Canada111
Posted: Monday, November 11, 2019 10:45 PM
Joined: 8/22/2016
Posts: 263


This is circuitous rant. 
Is it that no one comes to the Early Onset forum because the people who really suffer from Alzheimer’s and other forms of progressed dementia are too far gone and can’t read or write and have nothing to share? I wonder about this. Am I the only one who has a need for a community of people who can still write about their experiences?  I wonder if all the activity that went on this forum was because one person was able to write about her tumultuous story in detail FOR SIX YEARS. Why no one else? Could it be that that one person did not really have Alz? I do know that she never went to a neurologist who did the imaging (Spect scan and FDG Pet Ct) that shows the pattern of these dementias. MRI is not sufficient to show likelihood of Alzheimer’s. So maybe her drama was not neurodegeneration. She certainly was a mesmerizing and vivid writer!
Are there others who have been diagnosed, who read the forum who also want to vent! If I write I am now one hand clapping, unless I agree to talk about planning for the future (what future? Every day is pretty much Groundhog Day! I can’t plan beyond the next day or week. I just put things in my iPhone calendar so I will know what’s coming up, then set my alarm so I can be dressed and ready if I have to go somewhere with my husband or a companion). 
I was a world traveler, and an educator and filmmaker. The last two trips I was able to take were to Israel in March 2015 where I presented my film work at Jerusalem University by invitation. The next trip was in June 2016 to New Mexico and California to detox from medications that had made me lose my sleep cycle and contributed to the onset of dementia/Alzheimer’s. It took me months to be able to be able to fall and stay asleep after the detox. In my case the medications I took for depression and anxiety triggered the onset. What I learned is that onset can be spontaneous and progression can be fast. I pushed myself to continue working for another 10 months and then it was obvious I had to retire. That was June 2017. It’s like I died and time had stood still as I watch myself progress and deteriorate s-l-o-w-l-y. 

Now 3 and 1/2 years later my days are difficult. I have difficulty walking and rarely go out alone. As soon as I retired and I told friends my diagnosis they all disappeared. I have one friend who visits once a week and brings a meal and we play Scrabble. My husband works full time and he hired a companion to help clean the house and provide companionship. He leaves me breakfast and does all the cooking and food prep and shopping. 

It is hard to get out of bed and dress myself but I push myself to. My accommodations include putting my clothing for next day on a hanger before I go to bed and leaving my shoes where I remember they will be. I write a list every day for what I’d like to accomplish. This includes eating meals and getting dressed, groomed and brushing my teeth. I can still write and draw and converse. I see a therapist once a week who knows I have this disease. I’ve been going to her for 2 and 1/2 years. Her office is 3 blocks  away. I used to go alone but now my husband takes me and picks me up.  She encourages me to continue writing my blog and drawing (I’ve still been posting in my blog once a month). I take photographs on my iPhone which I post to my blog with my drawings and writing. 

This is a disease of forgetting and though I have impaired short term memory I still can reflect on each day. Yesterday I watched the entire 3rd season of Designated Survivor on Netflix. Keifer Sutherland and company took me away from this for awhile. Yes I can follow a storyline and as far out as that one was its plausible. 

In the past year I’ve started to babble and gibberish often comes out. I am aware of this and often can’t control it. My husband will say “you are babbling”, and I will try and stop. 

I text with a woman some of you will remember from her Avatar “Blue Skies”. She has FTD and can’t speak now, but still writes eloquently. She wrote that when she tries to speak only gibberish comes out. With me it isn’t that way all the time. I can still converse. 

I push myself very hard to keep going which means I walk, do simple yoga once a week with a teacher who comes to my home. We do some postures and work on my balance. I write and read some and participate in online dementia zoom chats. I go with my friend by Uber to accessibility programs for people who have dementia at Lincoln Center and museums. It’s impossible to have a conversation with anyone who has dementia there. I wretch if I smell someone’s diapers! I speak with the caregivers and the spouses. 
I am still here and aware of what is going on. My ability to walk and navigate is limited,  
What a tragic, boring, lonely and inescapable fate this is. I would never have imagined this would happen to me. I am now 65 and 1/2.

Is there anyone else out there with a similar trajectory? Have I asked that question before? Lol! 

I would never want to go into a facility. What’s your story? Am I one hand clapping alone here? 


Michael Ellenbogen
Posted: Tuesday, November 12, 2019 6:05 AM
Joined: 11/30/2011
Posts: 2679


What gives you the right to questions some one’s diagnoses? This is why people no longer post. 
Canada111
Posted: Tuesday, November 12, 2019 8:56 AM
Joined: 8/22/2016
Posts: 263


Why are you attacking me Michael? You do not know why people don’t post here anymore. I know that each persons pattern with Alz and dementia is different but also know that loss of function is what I’m experiencing and it is and continues to be very very scary and I have need for communication and support. Not to be attacked for asking questions or expressing doubt.  I wish you would have more compassion for those who are brave enough to STILL be here and show vulnerability.
Michael Ellenbogen
Posted: Tuesday, November 12, 2019 9:03 AM
Joined: 11/30/2011
Posts: 2679


I am not attacking you but pointing out that you should not question others diagnoses.

 

This what you wrote. I don’t think it is nice to say that.

 

I wonder if all the activity that went on this forum was because one person was able to write about her tumultuous story in detail FOR SIX YEARS. Why no one else? Could it be that that one person did not really have Alz? I do know that she never went to a neurologist who did the imaging (Spect scan and FDG Pet Ct) that shows the pattern of these dementias. MRI is not sufficient to show likelihood of Alzheimer’s. So maybe her drama was not neurodegeneration. She certainly was a mesmerizing and vivid writer!


jfkoc
Posted: Tuesday, November 12, 2019 10:56 AM
Joined: 12/4/2011
Posts: 17560


We all know that diagnosis is very difficult. It was not long ago that the diagnosis of AD was only possible postmortum.

Three years ago who talked about FTD, VD, LBD, PDD, DPD and more? These were rarely discussed. Today what was once lumped together as AD is found to be different and let's not forget to go way back to when everything was senility.

So the question might be begged "who is this forum for"?

My answer would be that it is for anyone faced with living with first of all a problem with cognition. That would be the opening ante and that does leave it open to those with a cognitive problem as well as those effected by it. In other words caregivers. That said I personally feel that the space is primarily for those affected but caregivers have a  lot to offer and mush to learn from the posts here.

Take a look at what Canada has shared on how she manages her day. There are ideas that both the PWD and their care partner can use. hopefully other will join in and share what help them and the whole topic builds.

The topic of social interaction was also brought up. Discussion? Ideas? Feelings?

Planning for the future? How are you going to manage where you sleep if you can not do stairs? Are you remodeling your bathroom?

I could be all wrong. I am going to start a topic that will probably make it clear if I am.


Unforgiven
Posted: Tuesday, November 12, 2019 1:58 PM
Joined: 1/28/2013
Posts: 2616


Just an observation, because I have been enjoying the social interaction on this board for a while now.  I have seen people disappear, most likely from progression, while others continue to post with only minimal change.

To doubt a diagnosis says nothing about the individual PWD.  It says more about the doctors who are sometimes out of their depth and their ability to communicate effectively to their patients.  Doctors are taught to expect horses when they hear hoofbeats, not zebras.  But the pattern of progression over an extended period of time may provide more insight.  I know a few zebras on this board, and I enjoy their company.

Remember, dementia and cognitive decline are merely symptoms of any number of causes.  This is not to say that those affected don't have a very tough road to walk.  But maybe they suffer from something other than the catchall A-word.

Questioning a diagnosis is not an attack on a person, and Canada's post was actually quite perceptive.  Neither is asking questions about a situations.  It may just be an attempt to get better information about a situation where clear communication has become problematic.

Case in point, my mother, who began having cognitive issues shortly after her 80th birthday.  She repeatedly said to me that her doctors had told her it was not Alzheimers.  So I blamed narcotics and general stubbornness.  Flash forward to 2012, when the final shoe dropped and after a long period of observation (very important because she always sounded very credible and oriented over a short term) a hospital physician declared my mother incapacitated.  I said, "I've been told all along that this isn't Alzhrimers,"  and he replied, "Well, actually . . ."  Best guess was Alzheimers mixed with vascular dementia.  Had my mother just not heard what her doctors were telling her?  As they say, a man hears what he wants to hear and disregards the rest.  If only I had known earlier, things might have gone differently.

My mother remained verbal to the very end.  I would not predict the progression of Alzheimers based on her, and I can see how things are very confusing for people involved here.


Canada111
Posted: Tuesday, November 12, 2019 9:14 PM
Joined: 8/22/2016
Posts: 263


Thank you Unforgiven for saying that questioning a diagnosis is not an attack on a person, and that my post was actually perceptive. As far as I’m concerned the only real evidence of Alzheimer’s or other dementia is ongoing progression not only symptoms.
ALZConnected Moderator
Posted: Wednesday, November 13, 2019 8:26 AM
Joined: 8/17/2011
Posts: 164


Dear ALZConnected Community,

Moderators have taken action to lock this thread. Members, please follow ALZConnected Community Guidelines which promote civility and respect for others.