RSS Feed Print
A News Story about Michael, Myriam, and Sandy
Lane Simonian
Posted: Thursday, May 28, 2015 10:15 AM
Joined: 12/12/2011
Posts: 5158

Here is a story about some of our current and former members. Most of the comments were good as well.

More people with Alzheimer’s are becoming activists — which brings its own challenges

Lane Simonian
Posted: Thursday, May 28, 2015 10:19 AM
Joined: 12/12/2011
Posts: 5158

Sorry the link did not work. The story is from yesterday's Washington Post (May 27, 2015).
Lane Simonian
Posted: Thursday, May 28, 2015 10:47 AM
Joined: 12/12/2011
Posts: 5158

I don't know why, but I just wanted to throw in the picture of Myriam and Lisa Genova (author of Still Alice) from the article.

Caption: Myriam Marquez, left, became a public advocate for increased Alzheimer's funding following her diagnosis of early onset dementia. At the right is Lisa Genova, who wrote "Still Alice" (photo courtesy of Myriam Marquez).

Posted: Thursday, June 4, 2015 5:37 PM
Joined: 9/12/2013
Posts: 3608

Just found this post and love it.

I am hoping to give another talk (rant) about ALZ and how we might better fund individuals in need NOW in addition to funding research and so on.

The cash help to a family or person seems money better spent to me. Americans want to cure aging...but the title of a book I just finished, "We all know how this ends" written by a man with ALS about our denial of death and the shock of a terminal illness plus the book on the Myth of Alzheimer's has my wheels turning into a person oriented fund ... help those living with this in addition to a hope in the future of some treatment.

We are all ambassadors. We are the treatment.

Mimi S.
Posted: Friday, June 5, 2015 8:20 AM
Joined: 11/29/2011
Posts: 7027

Lane, Thanks for putting in the picture of Myriam and Lisa.

I miss Myriam on these boards. She is especially helpful for those who suspect a familial Alzheimer's connection, since that is her story.

I do hope that she is so busy with her other commitments to the Alzheimer's cause that she can't fit us in.

Lane Simonian
Posted: Friday, June 5, 2015 10:21 AM
Joined: 12/12/2011
Posts: 5158

I miss Myriam, too. I miss her enthusiasm, encouragement, and knowledge. I do think her advocacy commitments are keeping her very busy.

Keep speaking up Alz+ in multiple places. People need to hear about dementia directly from the people who have it.

More money needs to be spent on helping caregivers understand their loved ones with the disease. Teaching them Naomi Feil's validation methods or the lessons of Bob DeMarco from Alzheimer's Reading Room would be a good place to start. And money should be given to caregivers who want to keep their loved one at home.

As far as research, two things are needed: one following up on a large-scale on what has already worked in small-scale human clinical trials and two studying people who have advanced very slowly and figuring out why. We are all going to die of something, but it does not need to be dementia.

Eventually, the voices in the wilderness will be heard.

Posted: Friday, June 5, 2015 10:56 AM
Joined: 9/12/2013
Posts: 3608

I understand the logic of hoping for a cure.

What is missing some times is that we are the treatment. The ability to help one another, to break through the Language Barrier of dementia, and to question authority in regards to the process of living with dementia.

It is not the most horrific illness or way to die. What is horrific is that people who lack the ability to perceive the continuation of our very humanity when we can not quickly recall and speak a name, or convey our wishes in words, that we are alive and conscious and in need of an environment that enables us to live with dignity and contentment. These conditions were once common place, before the illness gained traction, and it still happens all the time but the problem situations get all the attention.

Having dementia is very hard work for me. I am constantly relearning things, analyzing water faucets and underpants, navigating floors and rooms, trying to communicate with family members who distance themselves but still feel guilty, to accommodate my caregiver's moods and energy levels.

who is asking us, the people living with dementia, what we need now? no one, because by its nature we do not have the time for the learning curve to advocate for ourselves. By the time some of us can figure it out, our ability to make use of that information dwindles, our ambition exceeds our capacity to accomplish.

Our words are used against us. We are held to a standard appropriate only to those without dementia. It is still helpful to teach the blind to move about in the world instead of waiting for a cure for blindness.

Nothing to be taken away from research or organizations, but I want to add help to those of us alive now. It is an inhospitable environment for us to a great extent. Illegal to sleep in your car or sit on a sidewalk. One paycheck from losing your home. This is common in USA and tolerated. No one hopes to cure poverty, but it does not stop some of us from helping those struggling in those conditions.

Posted: Friday, June 5, 2015 11:02 AM
Joined: 9/12/2013
Posts: 3608

Lane Simonian
Posted: Friday, June 5, 2015 11:32 AM
Joined: 12/12/2011
Posts: 5158

Maybe, this is part of the divide. When most caregivers see that their loved one progressively losing most of his or her short-term memory, they see them as losing everything that made them a human being. But short-term memory is only one of the things that makes us human. To love and be loved is more important than short-term memory. As Bob DeMarco on Alzheimer's Reading Room put it recently the person with Alzheimer's disease is not our enemy, he or she is our loved one.

This disease has been my enemy for over a decade now. But maybe the bigger enemy is how we treat people with dementia, especially in the United States.

Thank you very much for the link to an article that hopefully many will read.

Posted: Friday, June 5, 2015 4:24 PM
Joined: 9/13/2013
Posts: 112


I feel that Michael Ellenbogen's case should be looked into again. I hope that HHS and Alz Assoc would reconsider to review the whole situation and change their decisions.

Lane, like you said, short term memory is only a part of who we are. EXACTLY. A person with AD's whole life story shouldn't be set aside or erased just because the person cannot remember as caused by the disease.

Alz+, yes indeed, there is so much to cope with in dealing with daily activities of living. No need for the extra stress of the negative attitude of other people.

The problem here is the lack of 'public awareness' of Alzheimer's Disease (AD), so that the public could be more compassionate to persons who have the disease and would know how to treat them - as a human being with a disease, with dignity and respect - just like people do with cancer patients. If people understood the disease, they would be more supportive and would do the right thing.

In our society, when people hear cancer, the first reaction is more of sympathy and compassion. But with AD, it is a sense of stigma, ridicule, best to be ignored and kept hidden even. People are uneasy about it. We need to change this negative perception of AD.

Alz Assoc has moved 'Alzheimer's and Brain health' month from September to June, using purple color as an symbol of AD awareness. And it is sponsoring a walk called The Longest Day on June 21, a yearly event.

Alz Foundation of America has worked with Rite Aid to promote Alzheimer's and Brain Health month this month of June. This has started in 2014.

Yes, there are many ways of advocating. Let us all continue the fight for a cure, treatments and help where ever we can.

Posted: Saturday, June 6, 2015 6:46 PM
Joined: 9/12/2013
Posts: 3608

In regards to the way dementia has become "the most feared disease in America" and how that creates a negative tone towards people with dementia - people died off at 30 for so many years, then 50 was old age for centuries. Only in past 150 years have so many people lived past 65! So dementia becomes a problem of longevity at a time when youth is worshiped, aging in general is feared, and our comfortable lives makes death an enemy, unnatural. The exploding population of people over 65 means dementia is more common. I am not sure what to make of EOAD as a separate condition.

my grandparents generation - and as far as I know all previous generations to them - accepted dementia, my grand mother was cared for at home, her adult children worked to support her life in different ways. I remember my mom telling me about going to visit her one time and how she swore like a sailor at my Dad , called him names. My grandmother was so proper, ultra proper so my Mom was horrified.

My Mom told me that my Dad replied to this tirade with a gentleness, head bowed, and said quietly, "You are tired. We will come back in a little while when you feel better." and they did go back and she was content again.

I guess growing up with people caring this way has influenced me, being kind is not so hard. then I got to help care for my Dad. Now I focus on how I would like to be treated ,to not be part of a freak show or a burden, just please fill in the blanks as I have more blanks, rub my feet and keep me in dogs.

A counselor I saw after I was diagnosed told me it was good to have high expectations, just not impossibly high expectations. That helped me adjust my expectations towards my husband and others. It is ok to not be gung ho about watching out for me 24 hours a day, forever. I understand I am on a train going one way, I am not getting off of it or coming back. I had to remember how to smile, how to be grateful, how to allow people to give what they can and not berate them for having limitations.

There is a big hole in the discussion about ALZ - help for people living now, disability laws amended, Medicare available...and there are no recovered patients to continue working towards this like cancer survivors.

By the time I comprehended the current attitude landscape after I was diagnosed, my capacity to do much was halved. The timer is always going in my head, how much longer can I participate in the world. Trying to find some way to participate in changing the national environment and mind set is part of my every waking moment. We pass the torch pretty quickly. Words are the currency of raising awareness.

I am losing my train of thought but once you see the hole that exists in the call for help, non-patient based objectives, raise money for a cure, I don't think you can un-see it. Please advocate for help for those of us living with dementia in any way you can.

Lastly, to be able to help others through this board is a tremendous gift of ! I am so humbled when someone feels their burden lifted by taking the longer view, the more loving view towards dementia. This board is an agent of change and I honor the organization for providing this opportunity.

Michael loved being part of this, I hope the rift is mended SOON as his life is changing every day, the time to make it right with him must be soon to matter. Time is everything when living with dementia.

love and courage