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This is the only safe haven
Posted: Saturday, October 6, 2018 7:18 AM
Joined: 7/17/2017
Posts: 342

There is a lot of wisdom and knowledge found on this forum. I have been a member under 2 different names for over 2 years. This section of the forum appears to be the only safe place. In Musings, there is a battle of political nature taking place over soon to be Justice Kavanaugh. In the caregivers sections, Christians and atheists are battling it out.

My question to anyone who reads this is why would any new member want to stay on this forum? I dont get out much, and I enjoy spending time on line with others. But lately, this place can cause more stress than anything else in my life. I know, dont read, stay away. For me, that kind of control is not easy, although I can usually stop myself from jumping in the fray by not responding.

What is really good about this site is all the information one can read when using the search engine to answer any and all questions from previous topics and posts. I have yet to type in a question or category  and not get several answers with lots of posts.

I hope there will be a change in the atmosphere on this forum.

Posted: Saturday, October 6, 2018 9:54 AM
Joined: 9/12/2013
Posts: 3551


I might have contributed to the discord replying about the next Judge and came to delete the comment this morning, then read your post and thought, I don't even want to read responses so I am leaving it.  

Maybe social media has changed the WAY people are communicating online now, when I joined in 2013 people were sharing their stories more, personal stuff that as they went through stages or had new symptoms people comforted each  other.

Now I see 100s of views and hardly any comments from new people.

The effect of american news weighs on me heavily and since I had just shared my My Too events last week or so, and then watching crude people challenging women's reality affects how I get through the day and night. It matters to a lot of us and in past I kept  my views to myself. In my real time life I do not ignore things I used to because it is part of my end of life healing to stand up for what I know is true when others are calling me a cry baby or liar or derogatory words for female.

I do not have enough interest in being polite to chance posting here most days so I have cut back unless I feel something happened or worked that I just want to share.

Andrew - you speak to my heart often. I hope you stay. Differences are essential to expanding our views of ALZ (and the world) since we each have to invent our own best way to get through this condition.

Be the change you are looking for. Tell your story, when you have a bad day or week or month it gives comfort to others who are going through the same things,maybe they found something that helped them, or what didn't help.

love and courage

Posted: Saturday, October 6, 2018 10:38 AM
Joined: 7/17/2017
Posts: 342

Thanks Alz, Im not going away, just hoping for a change.

When I first joined, this young onset section had dozens of posts each day. Now, barely a few each day, but still informative.

Iris L.
Posted: Tuesday, October 9, 2018 3:10 PM
Joined: 12/15/2011
Posts: 16273

It it VITALLY IMPORTANT that we preserve this message board for people with cognitive impairments and dementia!  

Believe me, I have discovered over the years that there is little to no help for people like us in the outside world.  They focus on people who already need caregivers.  The vast majority of everything useful about CI and dementia I have learned from my fellow members here.  

Yes, we used to share our stories and our helps.  We can still do this.  

We have to be strong about putting up our boundaries from the outside world, because the outside world will not help us and will most likely confuse and exasperate us.  

We have to be strong about keeping this board going.  This should be a SAFE space for people with cognitive impairment and dementia to share and emote.

Iris L.