We arrived home from an event in our condo's community room. Gregory was emptying his pockets into what we call our "Pocket Table," a cabinet with drawers kept by the front door, when he ran into trouble.
We each have our own drawer for "pocket stuff" including our wallet, keys, cell phone, Chapstick, the charging attachment for our phones, etc.
This fairly well thought out system has helped Gregory (and me) keep ourselves organized and able to find what we need to have on our person when leaving and returning to the condo.
Gregory called me in, standing in front of his open drawer and almost in a panic, he pointed and said, "Something is wrong here." The space where his wallet "lives" was empty. I am not sure if he knew that his wallet was missing or just that there was an empty space.
Used to this by now, I didn't get upset yet but said, "Why don't you check the shorts you had on earlier." He lit up and headed to the closet with me close behind. He proceeded to check through his shoes on the floor.
"No," I said, "not shoes … shorts." He looked confused but started to search the shoes on the shelf this time. "Shorts," I said, "Pants." Frustrated he began looking on the clothes poles but in the area in which his shirts hang. "Not shirts … shorts."
He finally figured out what he needed to do, getting a little more agitated each time but keeping his emotions under control. I am sure you can see by now that - shorts, shoes, shirts, shelves - sound alike and could be confusing.
I probably could have been more helpful or clearer in my directions but once the proverbial snowball gets rolling, it is hard to stop it. "Shorts not shoes not shirts but shorts." At least he finally figured out what he needed to do. But as you will soon see, once he starts to get confused it becomes more difficult with the next activities.
He found the shorts he had worn earlier in the day, took them off the pole, hanger and all. He felt around the shorts and lit up again because he felt his wallet in the pocket. But because the shorts were still clipped to the hanger, he couldn't figure out how to get the wallet out of the pocket.
He rummaged around inside the shorts and found the outside material of the pocket. He didn't think to go into the pocket so he continued to feel around the outside of the pocket being amazed that he could not figure out how to retrieve his wallet. He finally pushed the wallet up through the pocket, ice cream push-up style until it fell out of the pocket and onto the floor. He was relieved.
He was feeling better by now but I was devastated (which feels very much like anger.) As he got ready for bed, I sat in the living room feeling sad and numb. I didn't allow myself to get too upset or cry because I did not want to make him feel worse then he already did. When he was finished getting ready for bed I followed.
After reading for a while it was time to turn off the lights. The lights on my side of the room were off but my sadness was still on. Gregory was beginning to turn his lights off. He has two switches on the back of his night table. One turns off the table lamp and the other turns off the "up lights" on the bookcases under the windows. He likes to turn off the table lamp and then enjoy the items on the top of the bookcases: green pottery, framed art pieces, plants, a few piles of books, and our Teddy Bear Sebastian sitting on top of one of the piles of books.
Just before he turned off the last of the lights, he waved goodnight to the Teddy Bear. That simple action softened and settled my emotions and filled me with love. The sadness dissipated. I slept well.
Tuesday, August 31, 2010
Monday, August 30, 2010
Manuscript
Today, after close to a month of working with my editor Karen Schindler, I sent my manuscript off to the publisher who requested a look at it. The title of the work, at least in my head, is GYROSCOPE: An Alzheimer's Love Story. The title is based on the scientific instrument, a gyroscope, which can spin in circles while maintaining its balance. That is what my live has been like since Gregory's diagnosis of Early Onset Alzheimer's Disease in 2003
Through essays, observations, dreams, poetry, and selected quotations I tell the story of Gregory and my situation. Hopefully this upbeat positive work, when published, will help others involved with loving someone with Alzheimer's feel confirmed, supported, and a little less lonely.
I must say that I am a little down right now at having gone through my recent life at least three times. Once experiencing it, twice writing about it over the last seven years, thrice with the process of editing and proofreading it quite a number of times before considering it ready to send. Not an easy task.
My hopes are up but not my expectations. The manuscript is created and delivered, the rest is up to the publisher. At least for now...
Through essays, observations, dreams, poetry, and selected quotations I tell the story of Gregory and my situation. Hopefully this upbeat positive work, when published, will help others involved with loving someone with Alzheimer's feel confirmed, supported, and a little less lonely.
I must say that I am a little down right now at having gone through my recent life at least three times. Once experiencing it, twice writing about it over the last seven years, thrice with the process of editing and proofreading it quite a number of times before considering it ready to send. Not an easy task.
My hopes are up but not my expectations. The manuscript is created and delivered, the rest is up to the publisher. At least for now...
Saturday, August 28, 2010
The Family Alter
In the closet, on a shelf of the dresser units just below eye height, Gregory has set up his Family Alter. There variously framed photographs of family members who have "found their way out" smile their love while we remain until it is time to follow.
Each morning Gregory spends time with them: remembering, contemplating, sharing, meditating. He considers them his Spirit Guides and he thanks them for their past support as well as in advance for their present and future support.
On the back of each photograph there is a post-it with the name of the relative written on it. While he knows who each person is, he cannot always name each person so the signs help.
Part of Gregory has followed already and I know that his Spirit Guides cradle him gently.
Each morning Gregory spends time with them: remembering, contemplating, sharing, meditating. He considers them his Spirit Guides and he thanks them for their past support as well as in advance for their present and future support.
On the back of each photograph there is a post-it with the name of the relative written on it. While he knows who each person is, he cannot always name each person so the signs help.
Part of Gregory has followed already and I know that his Spirit Guides cradle him gently.
Saturday, August 21, 2010
Sigh
Last night as we were drifting off to sleep, Gregory let out a long sigh. As I am used to doing, I asked, "Are you OK.?"
"Yes, Gregory replied, "I am just so happy."
"And that makes me happy," I replied.
"Yes, Gregory replied, "I am just so happy."
"And that makes me happy," I replied.
Friday, August 20, 2010
Humor & Alzheimers
Very often, for a person with Alzheimer's, humor doesn't work anymore. When one has enough difficulties pulling every day language, it is a lot more difficult to use language in ways that promote laughter.
Humor is based on cognitive experiences with new insights, unique ways of seeing, pun,incongruities, shift in perspective, timing, reframing, absurdity, etc. All difficult for the person with Alzheimer's.
But every not and then, humor does peek through. I was working at my computer when Gregory called out from the kitchen, "Do you want to share the last of the cherries?"
"Yes, I replied." When I finished at the computer and joined him in the kitchen, this is what I found. Needless to say I got a chuckle out of this and Gregory was pleased with himself!
Wednesday, August 18, 2010
GYROSCOPE: An Alzheimer's Love Story
Continuing to plug away at the final edits of the book with Karen Schindler, my editor. Then off to the publisher, who requested a copy of the manuscript, to see what they think. Keep your fingers crossed!
Friday, August 13, 2010
The New York Times, August 13, 2010
Rare Sharing of Data Leads to Progress on Alzheimer’s
The New York TImes
By Gina Kolata
In 2003, a group of scientists and executives from the National Institutes of Health, the Food and Drug Administration, the drug and medical-imaging industries, universities and nonprofit groups joined in a project that experts say had no precedent: a collaborative effort to find the biological markers that show the progression of Alzheimer’s disease in the human brain.
Now, the effort is bearing fruit with a wealth of recent scientific papers on the early diagnosis of Alzheimer’s using methods like PET scans and tests of spinal fluid. More than 100 studies are under way to test drugs that might slow or stop the disease.
And the collaboration is already serving as a model for similar efforts against Parkinson’s disease. A $40 million project to look for biomarkers for Parkinson’s, sponsored by the Michael J. Fox Foundation, plans to enroll 600 study subjects in the United States and Europe.
The work on Alzheimer’s “is the precedent,” said Holly Barkhymer, a spokeswoman for the foundation. “We’re really excited.”
The key to the Alzheimer’s project was an agreement as ambitious as its goal: not just to raise money, not just to do research on a vast scale, but also to share all the data, making every single finding public immediately, available to anyone with a computer anywhere in the world.
No one would own the data. No one could submit patent applications, though private companies would ultimately profit from any drugs or imaging tests developed as a result of the effort.
“It was unbelievable,” said Dr. John Q. Trojanowski, an Alzheimer’s researcher at the University of Pennsylvania. “It’s not science the way most of us have practiced it in our careers. But we all realized that we would never get biomarkers unless all of us parked our egos and intellectual-property noses outside the door and agreed that all of our data would be public immediately.”
Biomarkers are not necessarily definitive. It remains to be seen how many people who have them actually get the disease. But that is part of the research project.
The idea for the collaboration, known as ADNI, for Alzheimer’s Disease Neuroimaging Initiative, emerged about 10 years ago during a casual conversation in a car.
Neil S. Buckholtz, chief of the Dementias of Aging Branch at the National Institute on Aging, was in Indianapolis, and Dr. William Potter, a neuroscientist at Eli Lilly and his longtime friend, was driving him to the airport.
Dr. Potter had recently left the National Institutes of Health and he had been thinking about how to speed the glacial progress of Alzheimer’s drug research.
“We wanted to get out of what I called 19th-century drug development — give a drug and hope it does something,” Dr. Potter recalled in an interview on Thursday. “What was needed was to find some way of seeing what was happening in the brain as Alzheimer’s progressed and asking if experimental drugs could alter that progression.”
Scientists were looking for biomarkers, but they were not getting very far.
“The problem in the field was that you had many different scientists in many different universities doing their own research with their own patients and with their own methods,” said Dr. Michael W. Weiner of the San Francisco Department of Veterans Affairs, who directs ADNI. “Different people using different methods on different subjects in different places were getting different results, which is not surprising. What was needed was to get everyone together and to get a common data set.”
But that would require a huge effort. No company could do it alone, and neither could individual researchers. The project would require 800 subjects, some with normal memories, some with memory impairment, some with Alzheimer’s, who would be tested for possible biomarkers and followed for years to see whether these markers signaled the disease’s progression.
Suddenly, in the car as he drove Dr. Buckholtz to the airport, “everything just jelled,” Dr. Potter said, adding, “Maybe this was important enough to get people to work together and coordinate in a way that hadn’t been possible before.”
The idea, Dr. Buckholtz said, was that the government’s National Institutes of Health “could serve as an honest broker between the pharmaceutical industry and academia.”
Soon, Dr. Richard J. Hodes, the director of the National Institute on Aging, was on the phone with Dr. Steven M. Paul, a former scientific director at the National Institute of Mental Health who had recently left to head central-nervous-system research at Eli Lilly. Dr. Paul offered to ask other drug companies to raise money.
It turned out to be relatively easy to get companies to agree, Dr. Paul said. It had become clear that the problem of finding good diagnostic tools was huge and complex. “We were better off working together than individually,” he said.
A critical aspect of the project was the Foundation for the National Institutes of Health, which was set up by Congress to raise private funds on behalf of the institutes. Dr. Paul was on its board.
In the end, the National Institute on Aging agreed to pay $41 million, other institutes contributed $2.4 million, and 20 companies and two nonprofit groups contributed an additional $27 million to get the project going and sustain it for the first six years. Late last year, the institute contributed an additional $24 million and the foundation was working on a renewal of the project for another five years that would involve federal and private contributions of the same magnitude as the initial ones.
At first, the collaboration struck many scientists as worrisome — they would be giving up ownership of data, and anyone could use it, publish papers, maybe even misinterpret it and publish information that was wrong.
But Alzheimer’s researchers and drug companies realized they had little choice.
“Companies were caught in a prisoner’s dilemma,” said Dr. Jason Karlawish, an Alzheimer’s researcher at the University of Pennsylvania. “They all wanted to move the field forward, but no one wanted to take the risks of doing it.”
Many people look askance at collaborations with drug companies, and often that attitude is justified, Dr. Karlawish said.
But not in this case. To those who are skeptical, he says, “My answer to them is ‘get over it.’ ”
He went on: “This one makes sense. The development of reliable and valid measures of Alzheimer’s disease requires such large science with such limited returns on the investment that it was in no one company’s interest to pursue it.”
Companies as well as academic researchers are using the data. There have been more than 3,200 downloads of the entire massive data set and almost a million downloads of the data sets containing images from brain scans.
And Dr. Buckholtz says he is pleasantly surprised by the way things are turning out.
“We weren’t sure, frankly, how it would work out having data available to everyone,” he said. “But we felt that the good that could come out of it was overwhelming. And that’s what’s happened.”
The New York TImes
By Gina Kolata
In 2003, a group of scientists and executives from the National Institutes of Health, the Food and Drug Administration, the drug and medical-imaging industries, universities and nonprofit groups joined in a project that experts say had no precedent: a collaborative effort to find the biological markers that show the progression of Alzheimer’s disease in the human brain.
Now, the effort is bearing fruit with a wealth of recent scientific papers on the early diagnosis of Alzheimer’s using methods like PET scans and tests of spinal fluid. More than 100 studies are under way to test drugs that might slow or stop the disease.
And the collaboration is already serving as a model for similar efforts against Parkinson’s disease. A $40 million project to look for biomarkers for Parkinson’s, sponsored by the Michael J. Fox Foundation, plans to enroll 600 study subjects in the United States and Europe.
The work on Alzheimer’s “is the precedent,” said Holly Barkhymer, a spokeswoman for the foundation. “We’re really excited.”
The key to the Alzheimer’s project was an agreement as ambitious as its goal: not just to raise money, not just to do research on a vast scale, but also to share all the data, making every single finding public immediately, available to anyone with a computer anywhere in the world.
No one would own the data. No one could submit patent applications, though private companies would ultimately profit from any drugs or imaging tests developed as a result of the effort.
“It was unbelievable,” said Dr. John Q. Trojanowski, an Alzheimer’s researcher at the University of Pennsylvania. “It’s not science the way most of us have practiced it in our careers. But we all realized that we would never get biomarkers unless all of us parked our egos and intellectual-property noses outside the door and agreed that all of our data would be public immediately.”
Biomarkers are not necessarily definitive. It remains to be seen how many people who have them actually get the disease. But that is part of the research project.
The idea for the collaboration, known as ADNI, for Alzheimer’s Disease Neuroimaging Initiative, emerged about 10 years ago during a casual conversation in a car.
Neil S. Buckholtz, chief of the Dementias of Aging Branch at the National Institute on Aging, was in Indianapolis, and Dr. William Potter, a neuroscientist at Eli Lilly and his longtime friend, was driving him to the airport.
Dr. Potter had recently left the National Institutes of Health and he had been thinking about how to speed the glacial progress of Alzheimer’s drug research.
“We wanted to get out of what I called 19th-century drug development — give a drug and hope it does something,” Dr. Potter recalled in an interview on Thursday. “What was needed was to find some way of seeing what was happening in the brain as Alzheimer’s progressed and asking if experimental drugs could alter that progression.”
Scientists were looking for biomarkers, but they were not getting very far.
“The problem in the field was that you had many different scientists in many different universities doing their own research with their own patients and with their own methods,” said Dr. Michael W. Weiner of the San Francisco Department of Veterans Affairs, who directs ADNI. “Different people using different methods on different subjects in different places were getting different results, which is not surprising. What was needed was to get everyone together and to get a common data set.”
But that would require a huge effort. No company could do it alone, and neither could individual researchers. The project would require 800 subjects, some with normal memories, some with memory impairment, some with Alzheimer’s, who would be tested for possible biomarkers and followed for years to see whether these markers signaled the disease’s progression.
Suddenly, in the car as he drove Dr. Buckholtz to the airport, “everything just jelled,” Dr. Potter said, adding, “Maybe this was important enough to get people to work together and coordinate in a way that hadn’t been possible before.”
The idea, Dr. Buckholtz said, was that the government’s National Institutes of Health “could serve as an honest broker between the pharmaceutical industry and academia.”
Soon, Dr. Richard J. Hodes, the director of the National Institute on Aging, was on the phone with Dr. Steven M. Paul, a former scientific director at the National Institute of Mental Health who had recently left to head central-nervous-system research at Eli Lilly. Dr. Paul offered to ask other drug companies to raise money.
It turned out to be relatively easy to get companies to agree, Dr. Paul said. It had become clear that the problem of finding good diagnostic tools was huge and complex. “We were better off working together than individually,” he said.
A critical aspect of the project was the Foundation for the National Institutes of Health, which was set up by Congress to raise private funds on behalf of the institutes. Dr. Paul was on its board.
In the end, the National Institute on Aging agreed to pay $41 million, other institutes contributed $2.4 million, and 20 companies and two nonprofit groups contributed an additional $27 million to get the project going and sustain it for the first six years. Late last year, the institute contributed an additional $24 million and the foundation was working on a renewal of the project for another five years that would involve federal and private contributions of the same magnitude as the initial ones.
At first, the collaboration struck many scientists as worrisome — they would be giving up ownership of data, and anyone could use it, publish papers, maybe even misinterpret it and publish information that was wrong.
But Alzheimer’s researchers and drug companies realized they had little choice.
“Companies were caught in a prisoner’s dilemma,” said Dr. Jason Karlawish, an Alzheimer’s researcher at the University of Pennsylvania. “They all wanted to move the field forward, but no one wanted to take the risks of doing it.”
Many people look askance at collaborations with drug companies, and often that attitude is justified, Dr. Karlawish said.
But not in this case. To those who are skeptical, he says, “My answer to them is ‘get over it.’ ”
He went on: “This one makes sense. The development of reliable and valid measures of Alzheimer’s disease requires such large science with such limited returns on the investment that it was in no one company’s interest to pursue it.”
Companies as well as academic researchers are using the data. There have been more than 3,200 downloads of the entire massive data set and almost a million downloads of the data sets containing images from brain scans.
And Dr. Buckholtz says he is pleasantly surprised by the way things are turning out.
“We weren’t sure, frankly, how it would work out having data available to everyone,” he said. “But we felt that the good that could come out of it was overwhelming. And that’s what’s happened.”
Tuesday, August 10, 2010
Keep your fingers crossed!
I haven't been writing on this blog for a while because I have been polishing my 200 page manuscript to send off to LaChance Publishers who requested my doing so. I am very excited, I am hoping, but I am not counting. Will let you know what happens.
Monday, August 2, 2010
The Story of Forgetting
This passage was taken from The Story of Forgetting: A Novel by Stefan Merrill Block. It is a wonderfully written, sensitive, joyful yet heavy story about: 1) A teenager whose mother has early onset Alzheimer's, 2) An old man who wishes he could forget, and 3) A land called Isidora where memories do not exist for anyone.
Hopefully this blog will be the most difficult one you will see here, but it makes one really realize that to live to today is a must, to be grateful for what one has is a must, to be compassionate and supportive is a must, to love fully is a must … for who knows when tomorrow will arrive.
Page 182
… when the disease commenced its final, irrevocable, backward march, death finally coming for all that life first brings:
The death of speaking.
The death of walking.
The death of control over the bowels.
The death of standing upright.
The death of self-feeding.
The death of crawling.
The death of sitting up.
The death of sleeping at night.
The death of swallowing.
When the final death came, that of the beating of her heart, so much of her had died so long before that this death was no more than another, was simply the last.
But at the end, modest solace: after countless deaths, after a full reversal of a life, what was left of Mama finally came to rest in the fragile circle of an unborn baby, her emaciated knees drawn snugly to the chest. The only word for her then was not dead but returned.
Hopefully this blog will be the most difficult one you will see here, but it makes one really realize that to live to today is a must, to be grateful for what one has is a must, to be compassionate and supportive is a must, to love fully is a must … for who knows when tomorrow will arrive.
Page 182
… when the disease commenced its final, irrevocable, backward march, death finally coming for all that life first brings:
The death of speaking.
The death of walking.
The death of control over the bowels.
The death of standing upright.
The death of self-feeding.
The death of crawling.
The death of sitting up.
The death of sleeping at night.
The death of swallowing.
When the final death came, that of the beating of her heart, so much of her had died so long before that this death was no more than another, was simply the last.
But at the end, modest solace: after countless deaths, after a full reversal of a life, what was left of Mama finally came to rest in the fragile circle of an unborn baby, her emaciated knees drawn snugly to the chest. The only word for her then was not dead but returned.
Subscribe to:
Posts (Atom)