Showing posts with label General Info. Show all posts
Showing posts with label General Info. Show all posts
Friday, December 21, 2012
Tuesday, August 16, 2011
Without Warning
A great support program for those with and those caring for those with Alzheimer's Disease. The meetings are held in Elmhurst at at St. Peter's Church and is sponsored by the Rush Alzheimer's Disease Center, 600 S. Paulina, Suite 130, Chicago, IL 60612, 312-942-5359.
Wednesday, January 19, 2011
What Does One Call It?
I like referring to Gregory's dementia in a number of ways.
We were grateful to get an "Alzheimer's" diagnosis from his Neurologist as that helped with winning our disability claims, both with a private company and with Social Security. With most of our doctors and with family and friends it is easier to call it Alzheimer's as most people have more of an idea of what that means.
I avoid using the term "Dementia" except with doctors and friends who are "in the field." Dementia seems to refer to "something that happens to old people" which Gregory is NOT. Using the term "Dementia" does not begin to suggest the true nature of the difficulties in dealing with the afflicted person on a day to day basis which is usually not at all imagined by others.
Sometimes I refer to it as "Our Situation," or "Our Condition" which emphasizes that it is at least as much of a problem for me (maybe more so) as it is for him. I sometimes refer to it as "The Big 'A.'"
I find myself replying to people's remarks about their forgetting where they put their keys, etc: "Yes we all have those problems as we get older ... but that is nothing like what Gregory and I are going through." I find it is important to me (and hopefully to others) to respond in this way as it seems that people make "excuses" or try to "relate" as a way of making themselves feel more comfortable with OUR situation and/or to ME make me feel better. Doesn't help!
The more I study the disease, the more I think Gregory's is a Frontotemporal Disorder. There are many types, symptoms, and names for Frontotemporal, the names do not matter. Gregory's symptoms are by now scattered across the various types of the Frontotemportal Disorder labels and descriptions.
I learned more about this particular dementia in a book I ordered from The National Institute on Aging/National Institute of Health at www.nia.nih.gov/Frontotemporal (or call 800-438-4380.)
The book was very helpful in helping me understand the more specific changes that are taking place in Gregory and in being supportive of hium as the changes continue, intensify, and/or show up for the first time.
Friday, September 10, 2010
A New Theory
I have seen again in the press, a new theory that has been circulating about the cause of Alzheimer's Disease. The good news is that if one knows what causes a disease, finding a cure could be the next step (however many years down the road.)
With incorrect understandings it is like trying to cure indigestion with a cold compress to the head. The problem has nothing to do with the attempted cure so its pretty obvious that a cold compress to the head will not cure indigestion. The headache might get better but the indigestion will not. Same with Alzheimer's.
The controversial new theory is that the brain is not destroyed by sticky plaques but by free-floating clumps of protein. The plaques that surround the brain cells of people with Alzheimer's might in fact be trying to protect against the toxic clumps. M.D. Sam Gandy's metaphor for the new thinking is that just as an oyster creates a pearl around a grain of sand to protest itself, plaques may serve as traps for the oligomers that are attacking the brain.
Further implications, if this new theory is correct, have to do with the current drug treatments which attempt to destroy the plaques leaving the toxic proteins behind. This could make the situation worse.
Rudolph Tanzi, director of the Genetics and Aging Research Unit at Massachusetts General HOspital says "The best drugs are yet to come." Here's hoping!
(Idea for this blog taken from AARP Bulletin, September 2010.)
With incorrect understandings it is like trying to cure indigestion with a cold compress to the head. The problem has nothing to do with the attempted cure so its pretty obvious that a cold compress to the head will not cure indigestion. The headache might get better but the indigestion will not. Same with Alzheimer's.
The controversial new theory is that the brain is not destroyed by sticky plaques but by free-floating clumps of protein. The plaques that surround the brain cells of people with Alzheimer's might in fact be trying to protect against the toxic clumps. M.D. Sam Gandy's metaphor for the new thinking is that just as an oyster creates a pearl around a grain of sand to protest itself, plaques may serve as traps for the oligomers that are attacking the brain.
Further implications, if this new theory is correct, have to do with the current drug treatments which attempt to destroy the plaques leaving the toxic proteins behind. This could make the situation worse.
Rudolph Tanzi, director of the Genetics and Aging Research Unit at Massachusetts General HOspital says "The best drugs are yet to come." Here's hoping!
(Idea for this blog taken from AARP Bulletin, September 2010.)
Tuesday, September 7, 2010
Difficult Decisons
Difficult decisions. I asked Gregory if he wanted to read my manuscript. This is the 140 page manuscript of my memoirs (if I can be so pompous to use that term) about Gregory and my experiences over the last seven years since his diagnosis of Early Onset Alzheimer's Disease. It has been sent to LaChance Publishing per their request to see my work.
There is nothing in the essays, observations, comments, dream descriptions, or poetry that Gregory does not know about but very often Alzheimer's "protects" the recipient with a buffer from remembering many of the difficulties and changes that take place over time. Also, I freely share my thoughts and feelings in my writings, many of which I do not share with Gregory not wanting him to needlessly feel sad because I feel sad.
Since the story is also his, how could I not at least ask him if he wanted to read it. And he chose to. In fact he is sitting at the kitchen counter, with a cup of coffee, reading it as I type this. I'll let you know how it goes. Meanwhile, please take a minute to leave a comment. It doesn't have to be anything special, just let me know that you have been here. Comment information is at the top of the blog and colored lavender. Thanks.
There is nothing in the essays, observations, comments, dream descriptions, or poetry that Gregory does not know about but very often Alzheimer's "protects" the recipient with a buffer from remembering many of the difficulties and changes that take place over time. Also, I freely share my thoughts and feelings in my writings, many of which I do not share with Gregory not wanting him to needlessly feel sad because I feel sad.
Since the story is also his, how could I not at least ask him if he wanted to read it. And he chose to. In fact he is sitting at the kitchen counter, with a cup of coffee, reading it as I type this. I'll let you know how it goes. Meanwhile, please take a minute to leave a comment. It doesn't have to be anything special, just let me know that you have been here. Comment information is at the top of the blog and colored lavender. Thanks.
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...
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.”
Wednesday, July 21, 2010
Summer Update
Periodically I send out an e-mail broadcast to family and friends to update them on how Gregory and I are doing with his Alzheimer's. By doing so, people for whom we care are able to keep up with the progress of the disease and be more responsive to Gregory (and me) when we get together. Some of the the people on the list live far away and do not get to visit too often so the update is a way to keep in touch with them as well. For the most part, I really dislike the usual "Christmas Letter" that is reproduced and sent out with the yearly card … but in this case, I think that this type of letter has a greater purpose. As I mention in the body of the e-mail below, we do value and appreciate the people in our life and their being on "The Path" with us is comforting and helpful to Gregory and to me.
Dear Friends,
Dear Friends,
Hi. Hope your summer is going well. For a change we have been enjoying an "at home" summer. No big trips planned or even anticipated at this time. Honestly, not sure if we have the energy or ability to do any big trips in the future … but also not ruling them out.
Gregory had a great July 4th birthday party with approximately 35 guests here for appetizers, drinks, fireworks, and birthday cake. With the help of artist Nancy Rosen, Gregory has begun a new "career" in oil painting, is quite good at it, and really enjoys what he is creating. The big "A," as I fondly call it continues to progress and we continue to review, reevaluate, regroup, rebalance, reorganize. Sounds like an Aretha Franklin Song (Re-Re-Re-Re.)
He continues to be happy, content, easy going and involved in life but also continues to decline in the areas of process skills, language retrieval, decision making, organization, planing, visual perception, making associations, follow through, and memory among others. Most of the time we get through what needs to be done and other times we have what I have labeled "Surprise Interactions." While HE IS NOT CRAZY, sometimes the behaviors, interactions, and communications ARE and it is all I can do to keep my sanity and/or tempter in dealing with them.
Michael has continued to reinvent himself through his artistic endeavors. If everything we know today comes true, there will be an opening reception of Michael's Museum at The Chicago Children's Museum on Navy Pier in March of 2011. "An Assembly of Assemblages" a show of approximately 25-30 of my purchased and found object assemblies in "boxes" in the style of Joseph Cornell will have an opening reception on June 2, 2011 at the municipal Village Hall in Lincolnwood, Il a suburb just next to Chicago.
I expect to be in "Carmen" again in September as a Supernumerary at The Lyric Opera of Chicago. I continue my creative non-fiction writing several hours a day, have been attending writers conferences, have joined a writers group, continue to work at becoming a published author, and have continued a close relationship with The Ragdale Foundation Artists Residency Program. For my 65th birthday, Gregory gave me a new camera and I have been honing my photography skills. Finally, I have been "promoting" myself via two web sites and three blogs. You can also find me on Facebook.
Below you will find direct links to the sites and blogs. Just click on them and you should be taken there. If you want to follow them, be sure to bookmark them on your browser so you can easily return. Also, please feel free to comment on the blogs. The more comments I get, the higher on the Google list I go, and when a potential publisher googles "Michael Horvich" they will get a good picture of who I am and how large my audience is.
Keep in touch. Always love to hear about you and your news! As always, Gregory and I appreciate your traveling the path with us.
Michael (and Gregory)
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