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Good evening, everyone,

These past few weeks I've been traveling a lot and working. I haven't been in touch as much as I want to be, and I have missed people's posts that are important. But so many of you have been kind and stayed in touch with me even if I haven't been able to return it and I really appreciate it Thank you!

Yesterday I did a 9 hour interstate drive. Sometimes I listened to music, sometimes I just watched the hawks soar by my side. In the mountains there was dense fog and it was easier to concentrate on the road in complete silence. I like interstate drives. They give me an opportunity to clear my head, to talk out loud to myself (literally)...to hear how phrases and words sound and feel when I repeat them over and over. When I drive, I practice writing out loud, instead of on paper.

Communication is the core of my life. I write all day long every day. And speak. And communicate. And write some more. And yesterday I found myself wondering "Why if I couldn't? What if I lost the ability to speak and the people who were taking care of me thought there was no one in there anymore? But there still was someone in there, only she was unable to reach out, and had become completely dependent on people reaching in toward her? What if that happened to me?

I have a fear that people would forget that I love music, and poetry, and art, and dancing, and gardening. That simple pleasures, like getting a manicure, bring me a tremendous feeling of peace and relaxation. That arranging a vase of flowers can occupy me for 30 minutes. That I love it when someone reads me a story, that I love listening to music and watching dance videos.

This is not so different from men and women who suffer from dementia. I don't care what anyone says. These men and women may lose their capacity to communicate in a manner that we recognize, but it would be a great mistake, and an error in our individual and collective humanity, to simply assume that they can no longer take comfort in simple pleasures - like listening to a piano sonata, working on a coloring book, or taking a few dance steps in the arms of a fellow human being.

There are many interventions for people with dementia. The only ones that seem to get any attention are the pharmaceutical ones. But this is changing, and stories like The Faces of Alzheimer's, by Anahad O'Connor in the NY Times will eventually tip the balance until people pay more attention to things that can be introduced into the daily care of dementia patients that are soothing - like music therapy (about which I posted last week) and art therapy.

When we spend time with ourselves, it puts us in touch with what matters to us. It reminds us who we are. How deeply connected we are. How much we need one another. And if we can remember what we need, it will be easier to remember what someone else needs when the time comes to reach out to them.

Thank you all for reading...and staying connected. Have a lovely night.

Giselle
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26 comments
 
you have such a beautiful soul Giselle. I would remember.
 
It is a pleasure reading your posts Giselle. A lovely evening to you as well.
 
Good evening to you, too .. what a great post .
 
Wonderful post- Thank you for sharing it . I promise to always hear this in mind from here on in ! how people willo still take pleasure, soul deep, in the things they enjoy
 
It is always worthwhile to try to reach within the shell of Alzheimers, and draw the person out. Yes, we should always try. One day we may be able to completely reach the minds of those who are trapped, and still find that person within. Oh wait. We already can find that person. We are just frequently tied up in expecting familiar means of talking to them. Thank you for such a thoughtful exploration.
 
Hello +Michael Buttler and +miriam dunn. If there is anything I know about you Miriam, it is that you could never forget how to reach people creatively. Not possible. Thank you...maker of magic hats!
 
Ah, +Mark-John Clifford that is quite an incredible profile page you have. You have experienced so much in such a short period of time. I glad for you that you seem to have so many tools with which to deal with all of this, including the technological ones. Who knows what will be the one that staves it all off. Thank you for reading and commenting and the very best to you as you go along...
 
Hi, +Bill Collins...isn't that the thing of it though? What we think we know can build walls against what we need to know, which is that when it comes to the way the brain works and this dementia stuff we are basically clueless as to what the person who has it feels because they can't tell us. I vote for kindness, generosity, not assuming anything and making their lives as pleasant on a day-to-day basis as possible. Thank you for thoughtfully exploring this with me...
 
+Giselle Minoli thanks for sharing. A very interesting post, article and comments.

I'll introduce myself today, not to promote myself or remember what you already know, but to guide people. I am a Psychologist (Volunteer) at the Instituto Paulo Brito http://www.institutopaulobrito.org.br/ (in Recife - Brazil) is a nonprofit organization specializing in rehabilitation programs in memory and treating degenerative brain disorders, cognitive and behavioral.

I am determined to create a Education Program to Family (Support) - Alzheimer's and Related Disorders. My goal is to reduce caregiver burden, offer community resources and increase skills in managing the illness.

Depending on the area of the brain that was affected, the speed at which the disease spreads is well posssível through the most diverse stimuli reaching the memory the of people with Alzheimer's disease.

Even those who neurology says that everything has been affected and everything was gone ... I look the lowest point of contact between patient and caregiver. +Giselle Minoli, in this scenario, each eye blinking is a breakthrough, a joy unspeakable for those who care for the patient.

In my care, I have recommended to the caregivers do a survey on what people liked best. Then together we will analyze and think what are the ways and means to stimulate. Then we started testing one by one ... There was a minimal response... is taken home as a way to provide the welfare of the patient, since they do not bring discomfort to the patient.

I have seen practical results +Giselle Minoli... Patients talk a little, sing a little, playing, eating, combing hair and bathing. It is a process + individual study of the evolution of the disease + caregivers.
 
Very moving post. Very apt too, before I read this, I reshared a post about dance and commented that it reminded me of you and +jane mizrahi.
Woke up at 03:51 or 11:51 UK time and couldn't go back to sleep. Can't imagine not being able to reach out by picking up the phone to call home or log on here and "communicate" with people via posts/comments. My current "walled" state is temporary (dark, no-one here, complete dead silence of the night) but you got me thinking about how permanent this state of being is for people afflicted with Alzheimer's. They are not empty shells, they are the same people we know and love trapped in state not of their making. We able-bodied are the ones that need to change our perpective. Make the effort to engage and assume we do reach in beyond the walls, even if they can't reach out in ways we recognise.
Didn't mean for this to be so long but I was inspired to share. Makes me grateful that I am able to do so.
Going back to sleep, nite everyone.
 
+Romero Cavalcanti "...in this scenario, each eye blinking is a breakthrough, a joy unspeakable for those who care for the patient..." this is beautiful and powerful Romero. You and I have chatted about your dreams and goals for an educational program for caregivers and I know you will get there! You are already getting there and the more you write about it and the more you post about it the more people will learn and become aware of what they can do to reach someone with dementia. Thank you Romero.
 
+dawn ahukanna It is always a pleasure to hear from you. Your comments can be as long as you like...your words are welcome here. Yes, grateful to be able to communicate at all! Me, too! Thank you.
 
+jane mizrahi Several social workers (who were good people I have no doubt) warned me not to try to communicate with my mother because "there was no one in there." This is what they are taught. This is what is written very often. I think it's a philosophy that has taken root because it's easier to believe that. On the other hand, if we believe that there is someone in there, then we have to go in after them and when you have absolutely no idea what to do, no idea how to do that...well, it's pretty daunting. The philosophy and belief system is slowly changing, but unfortunately people now need to be trained in these new interventions and all of this costs money.

Time. We need time and patience and knowledge. In the meantime we all have to remember that connection....is a brain altering experience.
 
hi Giselle,I came to your page because I missed your presence in "our space". Now I find this...wow,what perfect timing;see "our space" for why. We MUST talk. Hope you're well.xo
 
+Giselle Minoli Another interesting post... Time is life.

The Vanishing Mind
When Illness Makes a Spouse a Stranger.
By Denise Grady +The New York Times

Read More http://goo.gl/0tj0C

By 2006, Michael French — a smart, good-natured, hardworking man — had become someone his wife, Ruth, felt she hardly knew. Infuriated, she considered divorce.

But in 2007, she found out what was wrong.

“I cried,” Mrs. French said. “I can’t tell you how much I cried, and how much I apologized to him for every perceived wrong or misunderstanding.”

Mr. French, now 71, has frontotemporal dementia — a little-known, poorly understood and frequently misdiagnosed group of brain diseases that eat away at personality and language. Although it was first recognized more than 100 years ago, there is still no cure or treatment, and patients survive an average of only eight years after the diagnosis.

This disease is different from Alzheimer’s, the most common form of dementia. But it is perhaps even more devastating, because it strikes younger people, progresses faster and, unlike Alzheimer’s, does not attack memory at first but begins with silence, apathy or bizarre personality changes. It is thought to afflict at least 50,000 to 60,000 people in the United States.
 
Jane,so sorry to hear this...I'd love to chat....nice to see you +dawn ahukanna ...I was rushing when I last posted and didn't read through and MOST IMPORTANTLY to +Mark-John Clifford ;and if there is no answer from you will others please watch and re-notify him!? A4M doctors (board certified Anti-Aging and Regenerative Medicine) KNOW how to treat you to significantly slow the progression,especially if you just have "MCI" /mild cognitive impairment which it sounds like you do if you are typing so coherently on G+! Please google and find an A4M Dr in your area!!!
 
+jane mizrahi Hugs...who would have thought that parents with Alzheimer's would be such a bonding thing. My and my husband's mother as well.

+Kim Crawford M.D. PLEASE could you give me the DATE that you posted your supplements...as I would love to repost it a la this Alzheimer's post and others.... I feel like I'm being a pest...so apologies for troubling you. I know you're busy (or did I misinterpret that you made such a post)?
 
I DID make a post and Giselle..it was in response to YOUR queery on my post to give specifics. Now I know how to go retrieve an entire post but not the comments one by one...I've tried the post;look at the url thing and when I copy and paste it to see what I've got it just takes me back to my profile,not my little post.....

So I will go retrieve this but it might have to be the whole post....EEP EEP....
 
Kim...you're so sweet...we have to talk EEP EEP...do you remember the subject matter of your post on which I commented and maybe when it was? G+ has to fix this searchability thing. Drives us all crazy...
 
I vaguely remember the subject and the day so will go look... and yes when we talk next week maybe you can explain what you posted to help me and I just "didn't get".....not now...next week....I'll be back!
 
Found it and since it's a PUBLIC post am just copying my list to this stream G!! :-)

Giselle MinoliApr 24, 2012
Would you like to fess up and tell us what the anti-Alzheimer's cocktail is? My mother, too. I understand sugar in the blood is a contributing factor and heart health and brain health are related. True or no?
Kim Crawford M.D.Apr 25, 2012Edit
Absolutely +Giselle Minoli and to be bulletproof the list is a bit long...but "doable" (I do it!):
A pharma grade supplement high in antioxidants to prevent free radical damage
Omega 3 fish oils
Ginko....yes I know the evidence is not 100% but I'm including it all
Panax Ginseng
Pomegranate extract
Cordecepts mushroom
(The above 3 are combined in one supplement I take)....along with extra panax ginseng.....
Phosphatidyl serine
Phosphatidyl choline
SAME
Bioidentical hormones which are proven to improve cognition: Estrogen,Testosterone,HGH.....
And of course a brain healthy diet (fish,anti-oxidants,no additives,etc and EXERCISE DAILY for body and brain!
And there you have it! (And yes,sugar is bad and so are many pharmaceuticals!)
 
Glad I found it or would have just re-written it G...have a great day!XO
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