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Should there be a separate board for SCI?
Iris L.
Posted: Monday, October 21, 2019 12:43 AM
Joined: 12/15/2011
Posts: 16199


SCI is my term for Significant Cognitive Impairment.  I refuse to call what I have MCI, for mild cognitive impairment.  What I have is not mild!  


My neurologist initially diagnosed me as cognitive impairment not otherwise specified.  He has since written on my chart "minimal" cognitive impairment, based on how I perform on computerised tests.  He does not ask how I am doing with my IADLs.  I have significant impairments in the areas of finances and household management.  But I struggle on.

 

Via the grapevine I got the impression that some former members objected to me posting because I do not have AD.  The vast majority of what I have learned about how to take care of myself as a memory-impaired person has come from advice for people with dementia and AD.


Is it a problem for people without AD to post here?  Should we have our own cognitive impairment board?  Or should it be okay to keep posting here?  Please let me know what you think.

 

Iris


Michael Ellenbogen
Posted: Monday, October 21, 2019 6:48 AM
Joined: 11/30/2011
Posts: 2680


WE are all in the same boat no matter how you look at it. I could not care how others feel as its their lack of education if don’t understand. I myself have trouble just to stay on the four boards because its already to many places to go. As far as I am concerned we should be welcomed were ever we go as they all benefit from our comments and response. I will be away for the rest of the week 
alz+
Posted: Monday, October 21, 2019 8:44 AM
Joined: 9/12/2013
Posts: 3549


Is it a problem for people without AD to post here?  Should we have our own cognitive impairment board?  Or should it be okay to keep posting here?  


Iris, aside from all the excellent support and advice you have given for years here you can do what ever you like on boards. A separate section might be more inviting to all the people in a pre diagnosis state. There may be things better shared among pre-diagnosed people, more comfortable and maybe better answers on some stuff.

significant cognitive impairment vs MILD cognitive impairemnt? mild is when you have a glass of wine. significant is when you have to rearrange your whole way of living.

MILD to medical people is based on how much trouble do we cause others? They can not know how it affects us when it does not show on outside except can we do it all alone? do we need help (bother someone for help) once in a while. daily, hourly?

when we are too much trouble then the cognitive problem matters a lot and we don't matter at all. (I'm not sure what I mean by this - cognitive problems make writing senseible stuff out of my reach)

argh!

I miss you here and I use your advice daily and have shared it. 

One thing at a time - I stll bungle more than3 things, but now the trouble it causes it making me slow down.

love you and miss you. 


Iris L.
Posted: Monday, October 21, 2019 3:45 PM
Joined: 12/15/2011
Posts: 16199


Michael, I agree, we patients have much to contribute that others can benefit from.  Alz+, I like your definition of having to rearrange one's whole way of life.  I especially like, how much trouble we cause others!  This truly is significant! In fact, this is GENIUS!

Iris


SallyL
Posted: Monday, October 21, 2019 5:53 PM
Joined: 6/13/2016
Posts: 40


I appreciate the posts I read here -- often very helpful for a care partner. I can't speak to how others with dementia feel about it. Hope you will get some feedback,

Sally


Tink4495
Posted: Monday, October 21, 2019 11:25 PM
Joined: 5/2/2014
Posts: 758


Iris,

It saddens me to think someone would say something so negative especially on a board like this that exists to help everyone. Your support to me while I was caring for my mother was so appreciated. Your posts about what you have been going through were always so helpful. Learning from others who have any type of memory impairment is so valuable. I just don't understand why people are so mean and unappreciative. I am sorry you received negative judgment. I appreciate and have the upmost respect for you. Pioneer on my friend!


jfkoc
Posted: Tuesday, October 22, 2019 10:03 AM
Joined: 12/4/2011
Posts: 17562


We have MCI, Parkinson's with dementia, VA, FTD and many other kinds of dementia. All have always been welcome. 

If someone objects who cares...lol


alz+
Posted: Tuesday, October 22, 2019 11:01 AM
Joined: 9/12/2013
Posts: 3549


on a usual selfish note, Iris could you be here more often cause you are my Significant Other in traveling this road. I thought you were gone because a couple people were being very rude and it seemed uncomfortable enough to drive me away a bit too.

I came here today hoping you might come and respond.

JFKOC and MIchael and others JoC always constant in their insights and their take on things.

Miss Llee too.


Iris L.
Posted: Tuesday, October 22, 2019 7:04 PM
Joined: 12/15/2011
Posts: 16199


Alz+, I'm sorry that I am posting less often.  My mind seems to have been in shock lately.  The venom from some caregivers against me has been toxic.  I have to protect myself.  This is why I thought a separate board for people like me would be beneficial.  There used to be several members with cognitive impairment who posted.  Actually, there is no clear delineation between significant cognitive impairment and early dementia.  So, personally, I don't see a need for separation from a clinical standpoint.  Only from a message board management standpoint.


Iris 


abc123
Posted: Wednesday, October 23, 2019 11:02 AM
Joined: 6/12/2016
Posts: 673


Dear Iris, I look forward to your post. I have learned a lot from you. I think you should feel free to post wherever you choose. We all benefit from your post. I’m sorry that some caregivers have hurt you. I just want you to know I appreciate your wisdom and courage. Thank you for that.
Unforgiven
Posted: Wednesday, October 23, 2019 12:53 PM
Joined: 1/28/2013
Posts: 2616


I really hope there is no issue with people who lack an AD diagnosis posting on this board, and no, we should not segregate people with different forms of CI into their own little boxes.  That would benefit no one.

I have no diagnosis as of yet, but I can tel, I'm not hitting on all six cylinders.  I explain it as residual stress from years of caregiving.  I can stil, handle finances, but the mental strain of fighting with the computer in order to do so is so intense that I avoid it and procrastinate.  Am I unwelcome here?  I hope not, because you all are my friends.

Causing trouble for other people is one of the saddest parts of the PWD to CG relationship, Alz.  Because of anosognosia PWD are unaware of the extent to which they affect others who have to untangle the problems created.  My own mother would not see why I insisted she have certain things done by me and either forget or refuse to comply.  Oh, the number of times she unprogrammed her TV remote by pushing the wrong series of buttons and I would have the mental strain of reversing the process.  Oh, the number of times she broke lightbulbs trying to change them, or worse, played with the plugs making nothing work at all.  The problems became less complex toward the end but even more life threatening, such as night wetting, changing her clothing but forgetting to put on  continence protection and waking up to soaked sheets in the morning, or even worse, falling while trying to get to the bathroom after we had gone to complete adult diapers and hitting her head.  You can't tie a person in bed, and the fall mats provided by hospice were an even bigger trip hazard.  The hell of it was that she did not know any better.  I know you and Iris are having issues, but you are both light-years away from that, and you give me hope if my 'hereafters' and other memory lapses turn into something clinical.

I just figure friends with diffrrent abilities can help one another through life.


abbie81
Posted: Wednesday, October 23, 2019 2:09 PM
Joined: 3/26/2018
Posts: 6


I have gotten a diagonsis of mild cognitive impairment 14 years ago and after hours of testing last June got the same diagnosis.  I had a half hour of testing 2 years ago and was told I had mild Alzheimers.  I choose to believe that I have mild cognitive impairment.

It is nice to know that I don't have Alzheimers.  However having MCI is not easy.  I am always monitoring myself when I make cognitive mistakes.  I wonder if it means I now have Alzheimers.  I live in fear that this might happen to me.

I have a volunteer job and the people I work with notice that I have trouble with more complicated projects, so they give me all the easy work.  Still, sometimes I make more mistakes then I think is normal.  

I monitor when other people make mistakes and then think that maybe I am not so bad after all.  All this monitoring is taking some of the pleasure I want to have in life.  

I want so much to read comments from people that have MCI or SCI, and that I am not alone with my fears.

 

 

 


Iris L.
Posted: Thursday, October 24, 2019 11:37 AM
Joined: 12/15/2011
Posts: 16199


I just lost my post.  Perhaps TPTB are trying to tell me something.  I get it.  There is no interest in a separate board for members with significant cognitive impairment.  I'm okay with this.

 

One another topic, every time there is a monthly update, I have a hard time getting back on to this site.  

 

Iris