MedWorm.com provides a medical RSS filtering service. Over 5000 RSS medical sources are combined and output via different filters. This feed contains the latest items from the 'The Unforgettable Fund' source. Sat, 16 Aug 2008 14:48:19 +0100 http://theunforgettablefund.blogspot.com/2008/07/published-papers-published-thanks.html While July's From the Lab blog entry by Dr. Malcolm Leissring deals with explaining the "Molecular basis for the thiol sensitivity of insulin-degrading enzyme" an important paper issued by his lab and published this month in the very prestigious journal Proceedings of the National Academy of Sciences, I want to talk about one, little, tiny part of this scientific work that I have under my microscope. Here is a picture of it:In the "Acknowledgments" section of this research paper, you can find The Unforgettable Fund. Meanwhile, Dr. Claes Wahlestedt and his crew published their work in a paper entitled "Expression of a noncoding RNA is elevated in Alzheimer’s disease and drives rapid feed-forward regulation of b-secretase" in the July issue of Nature Medicine, which, according to many, has the highest so-called impact factor in all of medicine.This is the work, the incredible result, of two labs dedicated to fighting Alzheimer's disease. And these are the two labs to which The Unforgettable Fund donates. These two published papers - two sterling examples of Alzheimer's research - were made possible, in part, because of your help, your donation, your time, and your effort. That's huge. While The Unforgettable Fund may not hand out fancy plaques or have grand parties to lavish praise upon our donors, we offer you this small token of the incredible opportunities your generosity created, and continues to create, for Alzheimer's researchers. Right now, while you're at your computer, print out this Acknowledgment, fold it up, and carry it in your wallet. Refer to it often, and know that your contribution makes Alzheimer's research possible. Feel proud. You did this. You are what makes The Unforgettable Fund just that - an unforgettable fund.Great, great job everyone!PattyDon't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=1648914 Wed, 23 Jul 2008 16:12:00 +0100 1648914 http://theunforgettablefund.blogspot.com/2008/07/from-lab-july.html By Dr. Malcolm Leissring, Mayo Clinic JacksonvilleI am pleased to announce that work in the lab, supported by The Unforgettable Fund, was just published in the pages of a very prestigious journal: the Proceedings of the National Academy of Sciences!! The first author of the paper was Marie Neant-Fery, a summer intern from the University of Paris. Those of you who kindly donated to The Unforgettable Fund supported her internship, and so in a very real way contributed to this very important study. Thank you for your generosity!!! We have another student in the lab, Christelle Cabrol, also from the University of Paris and also paid for by The Unforgettable Fund, so we're hoping for a repeat performance. The title of the paper is “Molecular basis for the thiol sensitivity of insulin-degrading enzyme”, which probably isn’t to revealing to many readers of this blog, so allow me to translate. As most of you following my work will know by now, insulin-degrading enzyme (IDE) is an enzyme that can degrade the amyloid ß-protein (Aß), the sticky protein fragment that accumulates in the brains of patients with Alzheimer’s disease. Because IDE degrades Aß, anything that makes it work less well could lead to elevated Aß, which is known to cause Alzheimer’s disease. There’s some evidence that IDE does indeed work less well as we age, something that may directly link Alzheimer’s to the aging process. It turns out that IDE is inactivated irreversibly by certain chemical reactions—oxidative damage, essentially—that we know occur increasingly with age. The fact that IDE was vulnerable to this kind of damage was known in a general sort of way, but we did not know exactly what the cause was. In this recent paper, we showed exactly how this oxidative damage occurs in IDE, at the detailed, molecular level. This is a classic example of “reductionistic” science—that is, science that seeks to get at the absolutely most fundamental possible description of a phenomenon—in this case, the molecular basis for IDE’s thiol sensitivity (hence the title).Knowing these details is important for a couple of reasons. First, it solves what was a decades-old riddle. IDE was originally misclassified as a very different type of enzyme based on its sensitivity to the particular kind of oxidative damage studied in this paper. Second, and more importantly for our understanding of Alzheimer’s disease and possibly also diabetes, we now know precisely the kind of molecular changes that will inactivate IDE, which will enable future studies aimed at stopping this process or understanding things that trigger it. Potentially, it could lead to the development of biomarkers for IDE function that may indicate risk for disease. Third, rather unexpectedly, we learned a very interesting thing about the way IDE functions. IDE has 13 cysteines (damage-prone amino acids), which are located all over the molecule (see Figure). To figure out which cysteine(s) was/were most vulnerable to damage, we made mutants of IDE that contain just a single cysteine—with the other 12 mutated to another, damage-resistant amino acid. These “single-cysteine” mutants could be treated with a certain chemical, which would cause that chemical to attach itself to the cysteine residue, the location of which we knew precisely. It turns out that chemically modifying one cysteine in particular (Cys590) leads to a very surprising result—it causes IDE to degrade Aß faster! More important still, this same chemical modification had no effect on IDE’s ability to degrade insulin. This result is important, because it suggests that we might eventually be able to discover drugs that accomplish the same thing—which is exactly what we want to treat Alzheimer’s disease.Back to work!Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=1630907 Wed, 16 Jul 2008 13:26:00 +0100 1630907 http://theunforgettablefund.blogspot.com/2008/04/unforgettable-ft-lauderdale-foe-3140.html What does one wear to a Pig Roast? For days, I tossed this question around and came to the conclusion that whatever I wore, it would have to be pink, in honor of the pig. And so I found my pink shirt, my blue jeans and off I went to find the Ft. Lauderdale F.O.E. # 3140.Buried deep in the heart of this city, almost in the shadow of the I-95 overpass, nestled between two boat parking lots, sits a most unassuming building. Don't be fooled by the toned down entry way, through this door you'll find some of the biggest hearts in the state who pride themselves on throwing one heck of a party. We rang the bell, signed our names, and opened the door to complete and total good cheer. We were welcomed with open arms and hugs. You would think we were life time members returning from a long journey, instead of a group of stunned travelers from Palm Beach County. We were given a tour of this small Aerie - here is where the pig is roasting, there is where the buffet is set up, table after table is squeezed in with decorations, sparkles, knives, forks, and napkins. We sat elbow to elbow and enjoyed the best BBQ pork, baked beans, potato salad, cole slaw, pasta salad, deviled eggs, this kind of pie, that kind of pie, every kind of pie you could imagine. It was simply incredible - all the more so because they did the cooking themselves! No caterers, no hired help. It was the members of the F.O.E. doing what the F.O.E. does - people helping people.And speaking of people, the place was packed with all kinds, all kinds of backgrounds, all kinds of outlooks - a scientist next to an auto mechanic, a school teacher next to a film maker, a writer next to a nurse, an artist next to a lobbyist, an Irishman next to a great grandmother - all under one roof for one reason - funding Alzheimer's research.For those of you familiar with The Unforgettable Fund, you know we're the cheapest charity on the planet. We don't spend a penny of donor money on anything, it all goes to Alzheimer's research. This group, the F.O.E #3140, presented a check of $5,000 to The Unforgettable Fund, with the promise of another check of $3,000-$5,000 in a few weeks. That makes a possible total donation of $10,000. And all from one small, but very dedicated group. Can you believe that? We're so completely blown away by their effort.Throughout the night I kept thinking, "Imagine if every group across the nation did this?" Every Alzheimer's lab could be fully staffed and completely funded, running experiments 24/7, collaborating in shifts, getting to the bottom of it. Imagine if the nation decided, as we did when we put a man on the moon, that we would cure Alzheimer's disease in 5 years. Here's the money. Get going. Instead, labs are closing, scientists are unable to fund their work. We can’t wait for sweeping legislation, it's not coming. We need to find a cure for this disease because we have an enemy and it's not Alzheimer's, it's time.All is takes is the kind of effort the F.O.E.#3140 made. All it takes is the same determination we showed as a nation when we looked up in space. All it takes is the belief it can be accomplished. I believe it can be, the F.O.E has shown it can be. All we need to do is do it.Granted, the F.O.E. makes it look easy. But I know how much work it took. They spent months preparing for this one night, raising money, selling Jello shots, hosting Karaoke nights. When they presented The Unforgettable Fund with what they had collected, in the warmth and love of their Aerie, it almost made me burst into tears. This wasn't a big lavish gala at The Breakers - it was much, much more than that. And here are the pictures to prove it.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=1405308 Tue, 29 Apr 2008 02:41:00 +0100 1405308 http://theunforgettablefund.blogspot.com/2008/04/on-wings-of-local-eagles.html Before I tell you an amazing story, I want to let you know that in March, The Unforgettable Fund donated $2,000 to Dr. Claes Wahlestedt at Scripps Florida for his Alzheimer's research. We've also agreed to give Dr. Malcolm Leissring at Mayo Jacksonville $4,500 to fund a top-notch research assistant in his Alzheimer's lab for the months of June, July and August. He is going to be posting about this shortly.Everybody, take a bow, imagine thunderous applause. You did this. You made this possible. Every penny went right to where it's needed most, in the lab. And that's the role The Unforgettable Fund plays - getting donations directly to Alzheimer's researchers. Which brings me to the amazing story I mentioned earlier. About two months ago, Linda Rotman from Ft. Lauderdale called me and asked for The Unforgettable Fund credentials, documentation of our 501c(3) non-profit status, and our mission. She had read Sally Apgar's Sun-Sentinel story in November 2007 about The Unforgettable Fund. I sent the information she had requested and that was that.Well, this past weekend, Linda called again. She was so excited to tell me the news! And now I'm so excited to tell you! Her organization, the Fraternal Order of Eagles 3140 (the F.O.E to regulars) in Ft. Lauderdale has raised a substantial amount of money for Alzheimer's research and their national organization, the Grand Aerie, is awarding The Unforgettable Fund a grant of $5,000 with an additional grant to be announced on April 26, the night of their famous pig roast! I can't tell you how long it's been since I've used so many exclamation points in one paragraph! I just love this story! Linda, along with her co-chair Stephanie Lizesey, got out the word about Alzheimer’s and made a most incredible thing happen by doing what it is they do at their club - they cooked, had karaoke nights, played games and cards, Linda said she's never cooked as much as she has in the past month! I'm so taken with their effort that I can't find the words to adequately express how we feel. We're just blown away.Malcolm is coming down from Mayo Jacksonville, Claes is coming from Scripps Florida in Jupiter, Barbara Noble is coming from Scripps Florida as well. Sally Apgar is coming from the Sun-Sentinel, Anita Mitchell is coming from the mighty, mighty Mitchell Group of West Palm Beach, and, of course, my mother, Gertrude, is coming, too. And from the City of Winter Garden, a contingent is planning a trip down made up of Dolores Key and Andrea Vaughn. I will be bringing the camera - I'm not sure what one does at a pig roast but I can't wait to find out - because I want to post pictures of the event on this blog. I want to see if a photograph can in any way capture for all of you the kind of enthusiasm, generosity and awareness the F.O.E 3140 of Ft. Lauderdale has raised. Does it get any better than this? Be sure to check back after April 26!Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=1368341 Sat, 12 Apr 2008 13:57:00 +0100 1368341 http://theunforgettablefund.blogspot.com/2008/04/my-mother-rocks.html ...literally. She rocks babies every Wednesday morning for an Easter Seals nursery. Early in the morning, her girlfriend Jeanne picks her up. Between the two of these women, they've given birth to and raised 16 kids. They drive the back roads to get to the nursery, staying off the Interstate and avoiding the traffic of snowbirds and tee times. They've been doing this for about six months and it's so funny to hear my mom talk about it. She has first-step stories, and tumbles and crawling tales. She has something to say about each little infant.Her job is simply to rock them. She cradles each baby in turn, calming the criers, soothing the teethers. It fills me with great hope that in this cold and jaded world there are people like my mother and her friend who are so loving they actually change the world around them, armed with nothing but lullabies.She can calm any baby, including me, one of her biggest. (Just wanted to say I love you Mom and how proud I am to be your daughter.)Love,PattyDon't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=1352868 Sun, 06 Apr 2008 02:22:00 +0100 1352868 http://theunforgettablefund.blogspot.com/2008/03/its-coming-for-certain.html The number of people who will be impacted by Alzheimer's disease in the coming years will be enough to sink the economy of the United States. The most powerful nation in the world has no defense against this disease. There is no "abstinence" so people won't catch it. There is no "healthy" approach to living that will spare people. There is no vaccination protocol to up your odds.There is nothing you can do to avoid this. Just as you sit and wait for the sun to surely rise each morning, you will sit and wait for Alzheimer's to knock on your door.This, to me, is unacceptable. We allow this to be "the-way-it-is". We tolerate inaction, the blind eye and deaf ear of the great majority of US citizens.I'll keep standing on my street corner rallying the cry - WE WILL NOT ACCEPT THIS - until someone listens. I'll keep my little beggar can out there pleading for donations to fund Alzheimer's researchers. I'll keep writing.Alzheimer's is CURABLE, it's TREATABLE, it's BEATABLE. But the Alzheimer's scientists in their labs are the ONLY ones fighting. And they say they are only funded to do about ten percent of the research they need to do. At that rate, we're destined to be the burden on our children that will crush them.It doesn't take a crystal ball to figure out this beast of a disease is coming. It doesn't take an economist to figure out we can't afford to deal with it. It doesn't take a politician to figure out a sick aging population will crush the "future" of American youth.It takes us - you and me - to turn this thinking around. We've been through it. We've lived it. We know in a way we wish we didn't, what this disease REALLY means. We know exactly what we're talking about. And if those who have been through it don't warn the others that are headed this way, we shirk one of our greatest responsibilities - to be our brother's keeper.Soapbox speeches on blogs seem truly pathetic, but I keep imaging someday, someone with the power to turn things around will stumble upon all of these writings and listen. They'll see my little beggar can and donate. They'll get behind the solution before they become the problem.Again, thank you for the opportunity to bring this up. There are no easy answers but one - put your money to work in the labs that are fighting this disease. And if you're interested in doing that, go to www.theunforgettablefund.com.Patty McNally DohertyDon't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=1316571 Thu, 20 Mar 2008 14:56:00 +0100 1316571 http://theunforgettablefund.blogspot.com/2008/02/what-great-idea-my-friend-bert-had.html What a great idea my friend Bert had. She asked us to list things to say or do when someone has Alzheimer's. She's going to put suggestions together in a pdf so people can download it and print it out. For free. Add your suggestions at her site or add them here and I'll get them to her.I have many, many things I would like to put on this list. I think there are as many good ideas as there are people with this disease.1. Be brave always. It takes a lot of courage to support someone through this disease.2. Be honest. Don't pretend to be what you're not. If you can't handle it yourself, ask and INSIST UPON getting help. And don't be polite about it - you'll sink like a stone if you don't put on your swimmies. GET HELP.3. Be patient. It's a long haul of a disease.4. Be understanding. You will never unravel the mind of a demented Alzheimer's loved one. Instead use your OWN memory to recall their qualities.5. Be agreeable. Don't argue, you can't win. Insteand, agree agree agree. Yes, you want to take a walk. Yes, it's the middle of the night. Yes, we'll have a snack instead. Yes, this is perfect. Yes, you can sleep with your shoes on. Yes, you're exactly right about this. Yes, I love you, too.6. Speak respectfully. These are grown adults, who have lead long, challenging lives. They are NOT children, they are NOT idiots, they are NOT to be spoken to like children, they are not to be spoken to like idiots.7. Don't yell. Just because someone can't understand you doesn't mean they're deaf.8. Touch, hug, hold hands, pat, rub, kiss. Touch again, hug again, hold hands again, pat again, rub again, kiss again. Repeat often. Again and again and again.9. Smile. Laugh. Smile. Laugh. Be the light that walks into a dark room. Be the smile that eases anxiety. Be the cause of laughter.10. This is NOT your disease. You can breathe and run and plan and remember. Stay attached to the world around you.11. There is nothing shameful about this disease. And anyone who doesn't get that cannot serve as a swimmie. You'll sink if you lean on someone who has no buoyancy.12. Resentment will eat you alive if you have siblings that don't care. Release them. You have enough to carry right now without the added weight of "he was mom's favorite and he doesn't even return my calls". Let it go for now. It's a weight, that's all. Deal with it later, for now, if you're going to stay above water, you have got to kick off the old, smelly, waterlogged, boots. Let it go. Kick your feet. SWIM! You can do this!13. Stay sober. I mention this because it's a really easy time to self-medicate. This disease hurts a lot. But you stand a better chance of actually helping if you're actually standing.14. Be proud of what you're doing. There is no higher standard to hold oneself to than this - honor your parents.15. Love never fails. This disease will show you what you're made of. And if you're anything like me, you'll be surprised how inadequate, incompetent and unqualified you'll feel. No one walks into this willingly. Not the person with Alzheimer's, not the spouse who survives, not the kids who find themselves shoved into the role of parental advocate. We're all attached and we ALL go into the drink when Alzheimer's pushes someone in. The stronger the tie, the more certainly I can say, you're going off the deep end. There are no landmarks, there are no buoys, just lots and lots of water - in the middle of the living room! In the heart of our homes, we're submerged!It takes time to learn to swim in this water. Five million people have Alzheimer's, and figure most of them are attached to at least one other person. THAT'S TEN MILLION PEOPLE!!! One minute you're on dry land, the next minute you're really wishing you had built a boat.16. Help the boat builders. Fund Alzheimer's research. Find scientists who are doing Alzheimer's research and get as much money DIRECTLY to them as you can. I started The Unforgettable Fund to do just that. After I washed ashore when my father died, I looked back at the ocean I swam in for eleven years and said - THESE PEOPLE NEED FRIGGIN' BOATS!17. Do what Bert, and Mike, and Mona, and Gail Rae, and Deb, and Jewbu, and so many others do - tell the tale. Keep telling the tale. Keep spreading the word. Keep talking. Keep shouting. Keep remembering.That's it for this morning. Please take what you can use, and leave what you can't.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=1219850 Sat, 09 Feb 2008 17:26:00 +0100 1219850 http://theunforgettablefund.blogspot.com/2008/02/ending-2007-on-wing-and-prayer.html In November, 2007, Sally Apgar of The Sun-Sentinel (one of our local South Florida papers) wrote a story about The Unforgettable Fund. She did such an amazing job, we have received over $6,000 in donations which will be donated to Dr. Claes Wahlestedt at Scripps Florida, our “local” Alzheimer’s researcher, on Monday, February 2. A few were large donors, but the great majority were a bit above or a bit below $10. I was overwhelmed with the generosity and heartfelt messages that these donors included with their checks. Many of them knew first hand the great loss Alzheimer's causes. Many lost spouses, friends, co-workers. An entire tennis team donated in the name of a member's mom. One man included the most lovely pictures of his wife, before and after. So many donated in the names of their mothers and fathers, husbands and wives. A son - whose father helped him as a partner in his business, and who now has Alzheimer’s - donated to The Unforgettable Fund instead of buying corporate gifts for his clients, sending them a card to explain. My friend and fellow Alzheimer’s blogger Bert from “Had A Dad” lost her father and a friend found us and donated in his name. So many people. Don’t know if it’s of comfort or not, but if you’re dealing with Alzheimer’s, you’re really, really not alone. There’s just too many of us, aren’t there?I wish to respect the privacy of these donors. In order to share their words with you, I will have to do so anonymously. I hope you hear the many voices that stand behind these words. I have a feeling they'll sound very familiar to many. "My wife was a wonderful, beautiful gal - and we were married sixty years - she repeatedly beseeched me with her frightened, confused, questioning, "Will you take care of me?" - Jack F."Thank you for caring. I hope there is a cure." - Morton T."Thank you for providing me with a way to make a direct contribution to scientists who are working on a cure for Alzheimer's disease. My best friend died from this disease. It was so sad to watch her decline." - Jean C."Best of luck in continuing your good work." - Denise D."Wishing you much success in your quest for the Alzheimer's solution. It will be the greatest "mitzvah" to the people of our world in this century." - Norman G."Your story was most touching. I am 94 and a WWII veteran. I've seen so many of my dear friends suffer. Good luck and I think you are wonderful." - Yale N.“Keep up the good work. My mother died 20 years ago from Alzheimer’s.” Gerald A.“Hope this helps a little.” - Nina G.“Read your article in the Sun-Sentinel and I think it’s great to make donations direct to The Unforgettable Fund.” - Jennie U.“Read the article in the Sun-Sentinel and was impressed that all donations go directly for research – instead of the frills – labels, cards, note pads. Sorry it can’t be more.” - Susan K.“I learned that as a blood relative to an Alzheimer’s patient, I stand a 40% chance of ending up with Alzheimer’s myself.” - Ken R.“My best wishes for your continued efforts in a revolutionary idea!” - Leah J.“After reading the article by Sally Apgar, and having had personal experience with an Alzheimer’s patient, I am happy to contribute to a fund such as this.” - Irving W.“I applaud you for your efforts. I read the Sun-Sentinel newspaper article with many tears, as I had a very similar and terribly sad situation with my father. I wish I could send more, but I wish you much good luck in your endeavors.” - Lorell R.“How refreshing to read in Sun-Sentinel Nov. 27, ‘07, of a way to help fight Alzheimer’s without a “middle man” and a deluge of unwanted address labels and other “free” gifts. I’m enclosing a small donation. I can’t do much, but I can do SOMETHING. Thanks and God bless you all.” - Isabelle E.“I am enclosing my check to help you in your fight against Alzheimer’s, which unfortunately, at 87 years old, my husband is a victim. Now, for the remainder of his years, robbed of his past. Seems so unfair, but who says life is fair!” - Phyllis L.“My father also died of Alzheimer’s so I share your pain. I have been giving to the Alzheimer’s Association but like the idea of 100% going directly to research. Keep up the good work.” - Kathleen W.“Wishing you loads of good luck.” - Shirley G.“Would like to help in this research. Please accept this check.” - Dorothy A.“A small donation for a very good cause.” - Elinor A.“Looking forward to quick results.” - Helene N.“I read the article in the Sun-Sentinel and am so pleased to find a place for my donation that goes directly to Alzheimer’s research. I hope your work will be fruitful and hasten to make this disease history.” - Rosalie H.“I’m happy to donate to an Alzheimer’s fund where the money goes to the fund itself and not for “administrative costs”. - Herbert S.“What a lovely idea you had to remember your father by establishing this fund.” Mary Lou B.I read and re-read these letters and hear them as a prayer, giving hope wings.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=1192781 Fri, 01 Feb 2008 06:14:00 +0100 1192781 http://theunforgettablefund.blogspot.com/2007/12/power-to-remember.html I was sitting outside last night. I'm in Florida, so the weather was beautiful, the sky clear, and a giant full moon lit the night. I started thinking about all that's happened the past year, the shifts in lives of so many people I love. I can walk through the days that passed as if they were happening today, I can recall smells and temperature, I can remember the sky, the conversations, the feelings, the food, the clothing, everything. I can return, revisit, remember. I can go back and forth, from then to now, taking what I want, leaving what I don't. Memory is power.It seems I have two tools in life - one sketches an image of the future, creating what I imagine things might be. The other acts as an eraser, rubbing off what didn't transpire. One is promise, the other reality. A wise man once told me there is a difference between the two, that the scars of experience remind us which is which.Malcolm has moved to Mayo Jacksonville, and is doing great things in the Alzheimer's lab there. Claes continues his work at Scripps Florida, making tremendous strides as well. The two of them stand as examples for me. I am not a scientist, far from it, but I watch their dedication, their determination, and their unstoppable quest to cure a disease that killed my father and millions of others. I remain dedicated and determined to help them in any way I can.They want to do such a simple thing - allow each of us to maintain ownership of the incredible power to recall our own past, to keep the reality of one's life where it belongs, in the memory of who we are, what we are, when we are, where we are, and why we are. They fight for preservation of our personal history, the uniqueness of our lives, our individual meaning. They think they're curing a disease, I think they're saving the world.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=1115027 Mon, 24 Dec 2007 14:44:00 +0100 1115027 http://theunforgettablefund.blogspot.com/2007/11/fathers-passing.html I have this really close friend, like a sister. I've never met her, never talked to her, and yet I know her and she knows me on a very deep level. We have walked the same path, hand in hand with our fathers. At the time my father and I were on this journey, I didn't know her, I was ahead of her by a few years. When I looked back, I heard this young woman speaking so honestly about the rocky terrain she was traveling, describing it so well, that it made me want to yell, "I've BEEN there, LOOK OUT, oh NO oh No oh No STOPPPP. GO BACKK. TURN AROUND."But as anyone who's been down this road knows, there's no turning back. It's always forward, into the dark, we stumble along gripping our father's hand. By the time we let go, we are holding onto a shadow. We are hand in hand with a body, a bit of a soul, and a fragment of memory. We look and can't recognize the man who taught us to ride bikes, count money, operate a car. The man who gave us away to our husbands. In our hand we hold the past, memory passes through our fingers, winding its way to our hearts. There are over 5 million voices now. It breaks my heart to hear the familiar sound as one passes.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=1052201 Tue, 27 Nov 2007 03:38:00 +0100 1052201 http://theunforgettablefund.blogspot.com/2007/11/moving-up.html Greetings, fellow TUF bloggers. I have good news and bad news: The good news: my lab has moved to the Mayo Clinic in Jacksonville, Florida! The bad news: hmmm…well, I guess there is no bad news, after all! For those of you who may be unfamiliar with the place, the Mayo Clinic, Jacksonville (MCJ) is unquestionably one of THE top centers for Alzheimer’s research in the country (make that the planet!), home to a long list of preeminent Alzheimer’s scientists such as Steve Younkin, Todd Golde and Dennis Dickson, to name just a few. Moreover, MCJ served as a fertile launching pad for the careers of numerous others Alzheimer’s luminaries such as John Hardy, Mike Hutton and others. So, what's the secret ingredient that led to all this success? It was the Mayo’s sage decision to build a research group in Jacksonville that focuses exclusively on Alzheimer’s disease and other neurodegenerative disorders. This allowed the development of a critical mass that most other institutions lack, which fosters collaboration, makes maximum use of shared resources, and lowers the threshold for significant breakthroughs. I am grateful beyond expression to be associated with such an esteemed group of scientists. There are more specific reasons for my move, as well, relating to my lab's interest in beta-amyloid degradation. Chris and Elizabeth Eckman are among the earliest pioneers in the broader area of beta-amyloid degradation. Moreover, Steve Younkin and his colleages were among the first to identify the link between Alzheimer’s disease and variations in insulin-degrading enzyme (my favorite beta-amyloid-degrading enzyme and yours). I can only hope that my arrival will make the critical mass more, well, critical! I have actively collaborated with Mayo scientists for almost a decade, but I’m almost embarrassed to say that, until visiting earlier this year, I didn’t realize what a great thing they have going here. Instead of hiring and training undergraduates to perform the chemical studies I’m involved in, I now have access to a chemistry core (run be real chemists)! Instead of hiring and training technicians to stain the brains of the Alzheimer’s mouse models I work with, I can collaborate with the world’s experts! Instead of shipping my samples to the Mayo to measure beta-amyloid levels, as I have done for years, I can simply drop them off down the hall, or run the samples myself! I’m like a kid in a toy store!! I hope the reader will stay tuned for some exciting developments to come. Moving twice in two years has surely slowed things down some, but I have tons of data I’m currently writing up, and I know my tenure at MCJ will help me make up for lost ground. Get your subscriptions for Nature and Science before it’s too late! --Malcolm Leissring, Ph.D.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=1028134 Thu, 15 Nov 2007 01:36:00 +0100 1028134 http://theunforgettablefund.blogspot.com/2007/10/breathing-in-present-breathing-out-past.html I've been spending time at my mother's house lately. This is the home she shared with my father for the past 30 years. I'm surprised to find it full of old memories of the past for me, like when she and my father put up my husband and I, along with our new born son, Macklin, for an unspecified period of time. Allan was just starting work as a chef, we were new to Florida, and they opened their arms to us - and a garage full of furniture and boxes as well. They didn't know how long we'd be staying or when we'd be leaving and they didn't care. I'm not sure if I would be as generous with such an open-ended plan presented by my grown children...I can remember so many different events that took place over the years in this house. It's not all just Alzheimer's disease. It's the good times, the bad times, the real times, that form this kind of protective barrier around me. This is where the heart of our family can be found - in the simplest things. There are gestures of kindness from my mother, the photo of my father with the first airplane he flew, pictures of my brothers and sisters all over the place. They call my mother on a daily basis, if it's not Rick one day, it's Barbara, or Chris, or Peter, or Mike. Jackie, my sister, comes flying through either on skates or her bike or her own two feet. A constant river of all that makes this family what it is - vibrant, connected, alive - swirling around my mother, the center of gravity for us all.I write a lot about the horror of my father's Alzheimer's disease, and would like to take a deep breath and tell you that there is life after it passes. It's really hard to make it through, together, without pulling apart. I often lost sight of the fact that one day, it would all be part of the past. It would be over. Alzheimer's would be gone. Another deep breath, love remains. The wreckage is swept up, carted away, by the daily tasks of living life, but it's love that restores our faith, allows us to let go, to release the pain of the past, taking away it's power to hurt us in the present. Orbits are put back in place, our planets resume their rotations, and gravity, created by the heart of my mother, pulls us together.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=982485 Fri, 26 Oct 2007 22:33:00 +0100 982485 http://theunforgettablefund.blogspot.com/2007/10/friend-and-fellow-alzheimers-blogger.html A friend and fellow Alzheimer's blogger has asked the following for her father:"If you want to send healing energy, love, light, whatever, please send it for his pain-free and speedy passage to the other side."I believe the universe will know exactly where to deliver your prayers - in case you're wondering how they'd ever find her dad.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=947932 Sat, 13 Oct 2007 03:43:00 +0100 947932 http://theunforgettablefund.blogspot.com/2007/10/dont-forget-without-fight.html Understanding the threat Alzheimer's disease poses to its population, the Florida Legislature committed $150 million, $15 million a year for ten years, to build the strongest Alzheimer's fighting machine in the nation. The Byrd Institute was built to serve as the hub of a wheel, its spokes extending to all Alzheimer's researchers in the state. In little more than a few years, the Byrd succeeded in getting their designation as an Alzheimer's Disease Research Center (ADRC). This is an incredible accomplishment, considering there are only 32 of these places in the country. Considering Florida's population, we could use about a dozen more...Anyway, the Byrd just had its official opening last month - memory clinic, floor after floor of labs, data centers, really incredible. Imagine my shock to learn their budget is on the chopping block! What! We're cutting Alzheimer's research in Florida? All I can think is that the Legislature must not understand how protective Alzheimer's families are of this research. It's our only hope! When you've lived through the horror of this disease as my family has - and if you're reading this blog your family probably has, too - silently watching research take hits like this is not an option for me. I hope it isn't for you either. Please share this video with any one you think might make a difference.Don't forget without a fight!Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=921605 Tue, 02 Oct 2007 18:25:00 +0100 921605 http://theunforgettablefund.blogspot.com/2007/09/start-fighting-by-writing-florida.html If you are in your 40's or older, and your parents are in their 80's, there is a 50% chance your mother or father will have Alzheimer's disease. Many get the disease younger, and some even get it in their 60's and 70's. But the majority will succumb some time in their 80’s. Because there is no prevention, every single one of our aging parents are at tremendous risk. Caring for a loved one with Alzheimer’s is overwhelming. Emotionally, how strong will you be when your mother can't remember you're her child? Physically, how strong will you be when your father raises his fist to strike you believing you to be an intruder? Financially, how strong will you be when the bills for their care start to arrive?Take it from one who's been there - we are NOT prepared to deal with this disease. In my eleven years of caring for my father, I never met a person who said, "Alzheimer's disease? Piece of cake." Instead, it's the telling of horror stories few are willing to talk about publicly. Or the sharing of sacrifices made to keep our loved ones in their own homes. Or the dilemma of post traumatic stress that swamps surviving spouses. For our parents' sake, for our sake, and that of our children, we can’t forget without a fight. And I have a fight with you, Florida legislature. Why in the world would you allocate $15 million dollars a year to Alzheimer’s research, build the Byrd Center, the largest free-standing Alzheimer’s research center in the nation, fill its labs with leading scientists, set up state-wide collaborations with other Alzheimer’s labs, and then yank $10 million away from it? I understand the need to care for our elderly through outreach programs. Trust me, I understand tightening the belt. But what you’re doing is strangling the only hope there is for defeating Alzheimer’s disease – scientific research. Let my family’s experience stand as a warning – our current population of 80-year-olds are the first wave of an epidemic of Alzheimer’s that will crash into every living room throughout our state if we don’t do everything we can to stop it. Research can and will stop it, without that hope we are in for a nightmare. Heed the warning, listen to your constituents, and protect this research. As the only fighting chance we have, honor your elders and treat this research with the respect it deserves. Get your hands off it.Be alarmed, voting citizens of Florida. For this kind of political axing to occur, your representative doesn’t understand this disease, or how its playing out in our homes across the state. We can teach them. Please share your story here - patty@theunforgettablefund.com - and I will see to it that every single one of your letters gets to the Governor of Florida. Tell everyone you know, everyone with an aging loved one in Florida, to start fighting by writing.Please include your contact information. And send this request to as many people as you can.Start writing, it’s time these stories got told.Patty McNally Dohertypatty@theunforgettablefund.comDon't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=903209 Tue, 25 Sep 2007 17:04:00 +0100 903209 http://theunforgettablefund.blogspot.com/2007/09/dont-forget-without-fight.html Finally, after all these years, I understand what it is that made my father's Alzheimer's disease so bad for me. I'd never, ever seen my father beaten by anything. He was a kid who fought his way out of inner city poverty, he was a WWII fighter pilot and he fought for what he believed in.People with Alzheimer's disease deserve a fighting chance.Other diseases, when you receive the diagnosis, you are given a way to fight. Chemo, surgery, medication, life-style changes. And you have hope that you might win. When you receive the diagnosis of Alzheimer's, your doctor has nothing in his bag of tricks for you. Nothing. You are cut loose and on your own. There is NOTHING you can do about it. There are no medical miracles.A blog I have followed for years is exploding right now. This woman's father has been tied to a bed in an ER for the past 4 days. He is much like my dad was - unable to comprehend what was happening, unable to protect himself. She is a raw, powerful writer. Blue collar and not privileged. If you want a window into the madness that's coming, I urge you to follow this blog. It's horrifying and it's happening right now in Connecticut - and in millions of homes across the nation.http://alzheimersdad.blogspot.comWe are left to our own devices, to come up with our own course of action. We are expected to handle the victim, their actions, and all the ensuing insanity. With a diagnosis of Alzheimer's, we are equals - money and privilege can't buy a way out. There are no experts who can turn it around for you. Alzheimer's is a non-discriminatory one way ticket to hell.If you don't think this is something you need to worry about, think again. Why do you eat right, and go to the gym, and stay healthy? So you can live longer? You may want to rethink that strategy until this disease is taken seriously enough to warrant adequate funding for a cure. That IS something money can buy.If this disease continues unchecked, it will be tough in every state in the nation, but it will swamp Florida. So the question is, why is the state of Florida acting like none of this is happening? Who's not listening?PattyDon't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=872098 Fri, 14 Sep 2007 14:31:00 +0100 872098 http://theunforgettablefund.blogspot.com/2007/07/from-rooftops-and-tv-antennas.html It’s kind of amazing, the generosity to be found in Palm Beach County. Today, Anita Mitchell, host of of WHDT TV’s “Conversations with Anita” interviewed me about The Unforgettable Fund and our effort to fund Alzheimer’s research. For half an hour, we discussed my family’s experience, our eleven years of trying to cope with such a devastating disease, and even had the opportunity to show the 5-minute video of my father’s life, narrated by my mother.It didn’t end there. The owner of WHDT then gave Anita an additional hour - a full hour! - to interview Dr. Malcolm Leissring and Dr. Claes Wahlestedt, the Alzheimer’s researchers at Scripps Florida. So for a full 90 minutes, the topic was Alzheimer’s. The science and funding issues were covered by our two scientists and the message was delivered - without help from the good people of our community the science is not going to move quickly enough to come up with the answers we’re going to need for effective therapies and treatment in our lifetime. If we want it, we need to propel it. And after what my family went through, and to what so many of you can attest, enough of this disease already! This is a serious topic, hard to put enough emphasis on the need for solutions, and the fact we have a definite clock ticking.With the help of the media, the message will be heard. Thank you to WHDT - Channel 17, to Anita Mitchell for hosting this show and to all of you who saw it and responded. I’ll try to put clips up next week.We can DO this, right? We have to do this. Right!Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=756631 Wed, 25 Jul 2007 04:22:00 +0100 756631 http://theunforgettablefund.blogspot.com/2007/07/from-rooftops.html This article was published on The Palm Beach Post "What Gives" philanthropy blog by Susan Miller on Sunday, July 8. She is a journalist who writes about the world of non-profits in Palm Beach County. Please add your comments to her article, if you'd like.(Also, on July 23 and 24, Anita Mitchell of "Conversations with Anita" will be hosting The Unforgettable Fund on her morning show. If you live in WPB, you can catch the show on Channel 17 at 9:30 a.m. Wahoooo!)Here's Susan Miller's article:An unforgettable advocateBy Susan R. Miller | Sunday, July 8, 2007Many nonprofit organizations are started by people who are touched in some way by an event in their lives.Such was the case of Patty Doherty, a Palm Beach Gardens graphic designer whose father was diagnosed with Alzheimer’s Disease in 1994. He died 11 years later and the seeds of her advocacy were born.She rallied her big, Irish family and their friends and within four months started The Unforgettable Fund, an Internet-based, not-for-profit organization.What makes the fund unique is that proceeds go directly to scientists at Scripps Florida who are trying to unravel the mystery of the disease and find a cure.It’s been a year since Patty got The Unforgettable Fund off the ground and in that time she’s raised $21,000.While it may not sound like a lot, she’s done it without spending a penny of donors’ money. All of her work, and the work of others, are donated.Every dollar raised goes to Alzheimer’s Research at Scripps Florida.Money is raised by word-of-mouth. She started an e-mail campaign called “The Fighting 22” in which family members each asked 22 others to donate and to ask others to do the same.Her board includes Dr. Malcolm Lessring, a Harvard Medical School-trained scientist who runs his own lab at Scripps Florida. Their relationship has become symbiotic. For Leissring, it has meant a new money source at a time when finding funding for medical research is an uphill struggle.Patty recently e-mailed me and sent me a 20-page document she’s had to fill out for the IRS as she attempts to get nonprofit status.Unlike so many nonprofits, hers’ spends nothing - not on marketing, not on office space, not on salaries, not on fundraising. As Patty told the IRS in her responses to their questions: “Spending $80,000 to raise $100,000 is not the method we employ.”As Patty plans for the future, she’s got some interesting fundraising ideas such as running profiles on her website of those who have donated and creating web-based events such as a virtual garden where digital flowers can be purchased for a donation.At a time when reliance on government funding of nonprofits is endangered and grants for medical research are being cut, Patty has some interesting concepts that others in the nonprofit world might look to.CommentsBy Mona Johnson, The Tangled NeuronJuly 9, 2007 8:00 AMIf all of us with family members suffering with Alzheimer’s and other dementias turned our grief and frustration into action the way Patty has, we’d be much closer to a cure. Involving people with dementia and their families more directly in research and education will result in better prevention, treatment and care at a lower cost.By Kimberly MitchellJuly 9, 2007 8:06 AMFirst, thank you to Susan Miller for sharing this story of a growing problem and an amazing woman, Patty Doherty. I am a friend and supporter of her efforts and will continue to do whatever she asks me to do to help.The helplessness families struggle through with this horrific disease, Alzheimer’s, is something everyone in our community must take note of and do something about. Yes, we have lots of causes to involve ourselves in. Yes, we have people who ask for support for those causes. But to me, Patty has laid out a footprint, with substantial, next-door researchers, we could all wrap our hearts and wallets around.Although it was a rough start getting them here, I am so proud to live in a community where Scripps Research decided to add to their mission for things like Alzheimer’s research.Bravo, Patty, for connecting that personal dot.By Jackie SeymourJuly 9, 2007 10:36 AMThank you so much for posting Patty’s story. She truly is an amazing woman with an incredible passion for helping the helpless.AD took a huge chunk out of our families heart, time and resources. We did our best everyday to bring comfort to my father by attending to his daily needs, but in the background, always the thought of hopelessness was there because there is no cure. He was only getting worse, every day, week after week, year after year.ALthough the disease felt hopeless, our love and efforts to make things better gave us hope. We even found many hours of laughter at our ridiculous ideas to make sense of all the madness that was happening.I believe that in the future more and more families will be affected and by then, their time will be too late, as was ours.Today is the day we can do something about it and we have the resources and the strength right here in Palm Beach County with Scripps. So now, we just need others to help us, and in the long run really help themselves and there own families.This disease is not going away and it feels like it is only getting bigger.There is only one woman in the world like Patty Doherty, but we can be little Patties and all make a difference by giving what we can.We get in small checks, written by shaky, frail hands of old women who are the primary caregivers of their husbands who don’t even know them anymore.Each day we have 24 hours to make a difference for our future. Be a Patty!By Barbara ReutherJuly 9, 2007 11:19 AMThanks for telling this story. More people need to hear it. People need to know how important it is to participate - to make a difference - to help change the course of this disease.By PaulJuly 9, 2007 12:39 PMWhat a great inspiration Patty is for all of us. Thank you PBPost and Susan Miller for taking the time to highlight someone who is making such an amazing difference! I would like to give to the Unforgettable Fund. Where do I send my check and whom do I make it payable to? Keep up the great work, Patty.By SusanJuly 9, 2007 12:43 PMClick on the blue link on this page that says “Unforgettable Fund” and it will take you directly to Patty’s web site.By Larry FisherJuly 11, 2007 8:46 AMAlzheimers is a cruel terrible disease that takes as heavy a toll on the survivors as on the victim. Patty and her family are doing a great job of educating folks and directly fighting the disease. Makes you wonder why organizations like the United Way and others have expenses in the millions. Maybe more “non-profits” need to follow Patty’s example of contributing 100% of their contributions to the actual work of the charity! Thanks for giving the Unforgettable Fund such positive coverage.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=729752 Thu, 12 Jul 2007 14:03:00 +0100 729752 http://theunforgettablefund.blogspot.com/2007/07/from-heart.html While working in the garden, I was wondering what an individual memory is worth. If someone were to ask me to choose a memory I'd be willing to lose, my first response would be to get rid of the bad ones. The time I fought with my best friend in second grade. The time I got lost in the woods. Labor and delivery without an epidural? Definitely. I'm sure I could find dozens of memorable events with which I'd be happy to part.But upon a more serious examination of what memory loss entails, it's impossible to untangle one memory from a cavalcade of others. A memory doesn't stand in isolation, like a cut flower in a vase, rather its roots dig deep into the soil of our being. We neither pick nor choose the seeds, but tend this large random garden throughout our lives. A row of grandchildren here, a patch of pets there, a greenhouse full of favorites, a shed full of disappointment, a tool room full of works in progress. The gardens thrive on our unique, particular styles. Memories are what they are, sometimes easy to locate and sometimes so elusive, the more we hunt for them, the further behind a shovel they hide.Alzheimer's disease strolls into this garden, neither gate nor fence can stop it. Our deep, rich memories are ripped up by their roots, shaken with powerful teeth from the soil of our past, and left to die.Will I lose the memory of my second grade fight? If I do, I lose the lesson I attached to it - never let the sun set on a quarrel. Will my wandering alone in the winter woods for hours be lost to Alzheimer's? If it is, I'll lose my love of maps as well. Will I forget a 52-hour labor to deliver my first child? If I do, my child, now a grown man, will be lost as well. All are connected in a root system so complex and delicate it challenges the most brilliant among us to unravel its mystery.I don't know why we remember things the way we do, I just know I want the freedom to wander this terrain, in full bloom, for as long as I draw breath.Do we grow old to stare at brittle vines, parched earth, the empty rows where the grandchildren were playing just a minute ago or do we fight for our memory, the who of what we are? And if we do fight, what is an individual memory worth? Pick your best or pick your worst, think about the value it has in your life, what you'd give to keep it, and donate that to The Unforgettable Fund for Alzheimer's research. Here's how.PattyDon't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=719354 Sat, 07 Jul 2007 17:51:00 +0100 719354 http://theunforgettablefund.blogspot.com/2007/05/father-dog-and-death.html There is a graveyard in West Palm that has an intriguing inscription above it. It states "Something so universal as death must be a blessing." Why we don't take more comfort in death is a question, no?So, for a dreary, rainy, cold Florida day, if you've got time to "kill" here you go:Years ago, right around the time my father was showing the first signs of Alzheimer's, we went to the pound and picked a most pathetic looking pup, puny with botched coloring. I can still hear my two young sons swearing to walk him and feed him.My husband and I became the "responsible parties". We named him Truman. He grew at an alarming rate. My vet would laugh every time we brought him in for his check ups. Twenty pounds, then 40, then 60 - finally leveling off at just over 100.At this point, I should mention the tiny little home we live in - no place to run, no place for exuberance. We rearranged the furniture to make room for his bed, adjusted to longggg, frequent walks to keep him satisfied, and invested in the pet food industry.Truman became the love of the neighborhood. Small children would run up to embrace this monster, parents would run equally fast to scoop up their trusting youngster. Visitors hesitated at the door, unable to tell his "Come on in bark" from his "I will devour you" bark. What strangers didn't realize, or want to stick around to find out, is that the worse thing this dog would have done to an intruder was lick them to death. He didn't know how to bite. Babies would crawl to his food dish, stick their fingers in his dinner, and he would just sigh, lie down til they were through. He befriended any stray animal, from possum to peacock, that wandered onto our patio - surrendering to his delight in anything/anyone new. He was a good hearted animal. A dog's dog.At the end of my father's life, I spent each evening sitting beside his bed in the nursing home, holding his hand. Suffice it to say, without a family member present, his end of life care would have been atrocious. That's all I want to say about that for now. My shift was from midnight til seven in the morning, at which time my older sister would come in to take over. I would go home exhausted, the hard plastic chair uncomfortable, the constant ticking and hissing of the oxygen machine impossible to muffle. I spent hours sketching him, trying to memorize every inch of his face. I would hold his hand, stroking it, just being with him.I came home one morning, and collapsed on the couch. Truman lay at the foot of the stairs, his usual lounging area. He just looked at me, didn't come over like he normally would. I looked at him. I called him to me, he tried to get up but collapsed. I went to his side, sat beside him, held his paw in my hand and looked him in the eye. Was he dying, too?!!! My dog?! Impossible! I grabbed my cell and called the vet. My younger sister and I rolled him onto a sheet and lugged him out to her car. I climbed in beside him, holding his big, huge head in my lap while she drove like a bat out of hell. I cradled my dog, watching his chest rise and fall slower and slower. He didn't cry, he didn't whimper, he just looked right at me and I knew he was dying. I held his paw. I told him, if he was going to die, to have fun wherever he was going. To run and play and have a great time, that we would be fine. That we loved him so much and he had been so good to us. That he was a great dog, did everything a great dog does. His chest rose and fell, his breathing stopped, he lay still, and Truman the dog was gone.It nearly killed me.But the really strange part of this tale and why I mention it in such detail is that eight hours later my father died, too.I know, for me anyway, there are no answers to be found in the odd, random connections in life, but I can't tell you how much comfort I find in imaging the two of them together, walking beside each other to wherever it is we go. Truman wagging his tale, my father whistling for him to follow.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=611071 Thu, 17 May 2007 19:33:00 +0100 611071 http://theunforgettablefund.blogspot.com/2007/04/from-lab-march-2007.html by Dr. Malcolm LeissringTo regular readers of From The Lab, please accept my apologies for not updating until now. I have been busy submitting 3 grants proposals that consumed all my time. Funding levels are at historic lows, so please consider donating.This is the latest in a series of posts that strive to use ordinary language to describe the Alzheimer's research going on in laboratories at Scripps Florida, as generously supported by donations to The Unforgettable Fund. Readers who are new to this series are encouraged to read prior From The Lab posts for relevant background.In the last several posts, we described a very exciting advance in the Alzheimer's field. As reported in the journal Nature last October, a team led by Dr. Wei-Jen Tang at the University of Chicago solved the 3-dimensional structure of insulin-degrading enzyme (IDE), an enzyme that can rapidly destroy beta-amyloid, a toxic protein fragment that accumulates in the plaques that litter the brains of Alzheimer's disease patients. This information is useful for a number of reasons, but is especially exciting from the point of view of designing new drugs that alter the activity of IDE. Amazingly, Dr. Tang's team showed how IDE can be activated by small changes that could be mimicked by drugs. This time, I want to focus in on a special part of IDE, known as the “active site.” This is the business end of the molecule, the bit that is responsible for cutting beta-amyloid into pieces. You might think of it as the "teeth” of the enzyme. Recall that IDE is a member of a special class of enzymes known as “proteases”, that cut proteins into smaller pieces. Proteins are made up of multiple amino acids linked together in a chain. For this reason, proteins or shorter fragments of proteins like beta-amyloid, are sometimes called “polypeptides.” The chemical bond that joins adjacent amino acids, naturally enough, is called a peptide bond. For simplicity, the figures below show just two amino acids linked together, but beta-amyloid has from 37 to 43 amino acids, and some proteins can have thousands of amino acids.So how does IDE cut beta-amyloid or other polypeptides into pieces? It does this by catalyzing a special type of chemical reaction known as “hydrolysis.” The term “hydro” means water, and the term “lysis” means cutting. And that is literally what occurs in the active site of a protease-a water molecule is used to separate a protein into two smaller fragments. The reaction is illustrated in the following animation. (Please click the image to view animation.)It turns out that there are a couple of different classes of proteases, which feature different kinds of active sites. IDE is an example of a “metalloprotease,” because there is a metal atom inside the active site that helps achieve the hydrolysis reaction. For most metalloproteases, the metal is zinc. I'm going to conclude this blog entry by showing you a little movie of IDE's active site that AJ Brockman and I put together. The brown sphere is the zinc atom, and you can see some dotted lines that show where it interacts with different amino acids inside IDE. To give you some perspective, the movie shows about 2% of all the amino acids in IDE, and is magnified about one billion times. (Please click the image to view animation.)Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=516093 Mon, 02 Apr 2007 11:50:00 +0100 516093 http://theunforgettablefund.blogspot.com/2007/03/guest-host-mona-johnson.html Last November, I went to a forum on health research sponsored byResearch!America. Elias Zerhouni, Director of the U.S. NationalInstitutes of Health (NIH), gave the keynote address. You can see apresentation similar to the one he gave athttp://grants1.nih.gov/grants/award/NIH_at_the_Crossroads.ppt. The basic points I got from his presentation were:• U.S. government funding available for NIH and biomedicalresearch is stagnant or decreasing• Given the current budget constraints, it’s unrealistic to thinkgovernment can fund in-depth research into multiple diseases, includingAlzheimer’s• The approach that NIH will take is to shift from focusing onresearch related to specific diseases to emphasizing research onfundamental disease mechanisms (inflammation, protein aggregation,apoptosis, immune response, signaling) that may be common to multiplediseases.It seems logical that this means less funding for Alzheimer’s anddementia research. Last month, the Cleveland Plain Dealer published a piece about cutbacksat the University Memory and Aging Center because a government grantwasn’t renewed. I don’t know the whole story behind these cuts, but Isuspect we’ll see more of these cuts in the next few years. If we want basic research specific to Alzheimer’s and dementia tocontinue, we’ll need to fund much of it through private efforts like TheUnforgettable Fund. Thanks to Patty and her family for pioneering theseefforts.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511770 Tue, 27 Mar 2007 21:44:00 +0100 511770 http://theunforgettablefund.blogspot.com/2007/03/chilling-documents-that-shake-and-stir.html I have been in Cambridge for the past month and recently came across three important documents I want to share with you. This is scary stuff, so I’ve included some instructions.First, grab a cup of coffee and read this:hms.harvard.edu/public/news/nih_funding.pdfNext, if you want to know how this is playing out in the labs, have a second cup and read this:http://www.palmbeachpost.com/business/content/business/epaper/2007/03/19/0319scripps.htmlAnd finally, if you want to know how this will affect your future, and that of your children, forget the coffee and pour yourself a stiff one to read this:http://www.consumeraffairs.com/news04/2007/03/alzheimers_cases.htmlAs an advocate for Alzheimer’s research, I realize The Unforgettable Fund is not even a drop in the bucket for what’s needed to run a lab but it’s SOMETHING - over $21,000 is a lot of money for one small website to generate. But it’s nothing compared to what’s needed to solve the complex puzzle of Alzheimer’s disease. Come on - do we exercise and eat right and watch our cholesterol and avoid fatty foods and get a good education and wear our seatbelts and pay our taxes so we can reach old age without a single memory of having done so?Our brightest minds battling our most horrific diseases have become the charity cases of the 21st century. What! Funding science is not charity, it’s the duty and obligation of our nation’s government to provide for the health of its people. But what if they refuse? What if they just say no? What if they aren’t listening? It’s up to us to make them listen.Why isn’t it common knowledge that our Alzheimer’s labs are being forced to fire their employees? Why isn’t it common knowledge that our cancer labs are being forced to let people go? You would think our government would be gearing these scientists to fight the battle for the health of the nation.You would be wrong.I don’t know about you, but I find the funding situation at the NIH outrageous and appalling and I plan to do something about it. If you want to know what I plan to do, please send me an email with contact information, you may want to join me. All suggestions are welcome here and I'll be more than happy to post the best ideas of the bunch. For instance, how about a National Take Your Parent To Work Day. How quickly corporate America would get it if our demented parents came to spend the day...I refuse to believe this funding situation can’t be changed. Please help. Please think. Please share.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511771 Thu, 22 Mar 2007 21:16:00 +0100 511771 http://theunforgettablefund.blogspot.com/2007/03/from-vault8-mar-2007.html Hello Everybody,Here is the donation update for the past two months.In January 2007, we received:Online donations= $470.41Mailed donations= $ 50.00$520.41 = January totalIn February 2007, we received:Online donations= $ 38.23Mailed donations= $1,025.00$1,063.23 = Febuary totalHere is a financial summary of The Unforgettable Fund which began in May 2006:May - June 2006= $10,534.62 June -July 2006= $ 71.58 July - August 2006= $ 553.32 August - September 2006= $ 115.00 Sept - October 2006= $ 200.00 October [second half]= $ 425.63 November 2006= $ 853.94 December 2006= $ 7,376.50January 2007= $520.41February 2007= 1,063.23Total contribution = $21,714.23Thank you to everybody.Allan DohertyFROM THE VAULTDon't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511772 Sun, 18 Mar 2007 17:29:00 +0100 511772 http://theunforgettablefund.blogspot.com/2007/03/guest-host-bert-piedmont.html How Alzheimer’s HurtsAlzheimer’s hurts the person who has it, and all those who come into contact with him (or her). My father was diagnosed in 2004 at age 63. The only experience I have is my own (which you can read about at http://alzheimersdad.blogspot.com), and here’s what I’ve seen/learned/experienced:Social IsolationAs my father gets worse, we take him out less and less. Since my mother has 99% of his care, that means my mom goes out less and less. I try to take him with me once in a while to give my mom a break, but it’s hard to pretend he’s “helping” anymore. He’s a hindrance, and that’s awful to say. He balks, he gets lost, he gets loud and argumentive. He can’t carry on a conversation, he can’t carry anything (something that weighs five pounds he’ll complain is“heavy”).EmbarrassmentSome of my father’s little foibles are very embarrassing. He is highly flatulent, and he doesn’t rein it in at all. In fact he seems to delight in pretending he hasn’t done anything. The noise and the smell can’t be hidden. Even around people who know he has Alzheimer’s (and who forgive his issues), we’re embarrassed.WorryI can’t help but worry that I’ll get Alzheimer’s. Depending on what book or article I read, I have a 50-100% chance of getting it. And my dad’s was on the cusp of Early Onset—we’re sure in hindsight that he started showing symptoms in his 50’s. I’m in my late 30’s, and every time I forget something, I think, “Is this how it starts?”DespairIt’s sad and horrifying to see a person you care about basically disintegrating before your eyes, to know that all the drugs and treatments in the world can only slow it down, and in effect prolong the agony.Ethical considerationsBeyond a simple DNR order, there are other decisions to be made, and none of them pretty. My father had a heart attack last summer, and he had stents put in as a result. (My mother wanted to spare him the continued chest pains, not necessarily prolong his life.) The hospital ordeal was so awful for him (he was restrained and drugged overnight) that we’ve decided to never put him in the hospital again for anything. Financial difficultiesMy parents are typical middle-class people. They have a small house, which is paid off, and originally they had two vehicles, also paid off. Nearing retirement age, they had some savings as a cushion. My dad retired as soon as he was able (because of the memory problems, we believe now—he said they used to “get mad” at him for “forgetting things”) and went on Social Security—the grand sum of $1,200 a month. My mom lost her job right after my dad was diagnosed. She is too young to retire and because she has to stay with my dad 24/7 she can’t get a job. His medicines (two kinds of Alzheimer’s medicines, heart and cholesterol medicine, anti-anxiety and anti-depressants) are over $600 a month. Medicare doesn’t pay for 100% of any of them, and by September each year, Medicare pays for none, which means the last few months of the year my mom has to spend 50% of their income on medicine. Because they own the house and have savings, they aren’t eligible for any other government assistance. My mom also has to pay for medical insurance for herself out of that $1,200 a month. When my father finally has to go into a home, the state will take the house, car and whatever is left of their savings to pay for it, as well as my dad’s Social Security. Hopefully by that time my mom will be old enough to retire and get her own check. They can’t afford any kind of respite care or day care. My mom has me or her friend come over and stay with my dad if she needs to go somewhere by herself, but that is very upsetting to him. I have a part-time job so I have the time to do that, but because I have a part time job to have time, I haven’t got the money to help in other ways. It’s a vicious cycle. All of us in the world of Alzheimer’s wish for a cure. Or a “stop”—find it, stop it where ever it’s at. But in the meantime, would it be too much to ask for help in other ways? The families and loved ones of Alzheimer’s patients need so much more than a bottle of pills. If you know someone in this situation, please reach out. If you are in this situation, and feel like you need help, ask those around you.-Bert PiedmontDon't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511773 Tue, 13 Mar 2007 19:35:00 +0100 511773 http://theunforgettablefund.blogspot.com/2007/03/guest-host-gail-rae-hudson.html She's Ain't Heavy, She's My MotherWhen I read Patty's introduction of her guest hosts, in a twist of thought I cannot explain I was reminded of something one of my sisters mentioned during her last visit a couple of months ago: That her husband wanted to see Mom "before she dies". I reacted briefly to this, as noted here, writing that I understood but had never experienced this One Last Look phenomenon and could not recall that it was a hallmark of my own born-into-family. We lived mostly out of country. Although my parents saw to it that we visited relatives every three years or so and I'm glad they did, as I would have known nothing of them otherwise, as our Ancient relatives ailed and died our family made no attempts to view The Passing Ones.As I thought with more depth about this common desire to engineer one last visit with an Ancient One with whom one has lost touch (and, it has to be said, probably won't be able to reestablish touch during that last visit), I realized that when I wrote of my understanding I was doing so out of turn. My attitude is, if you haven't kept up with someone throughout their life, what's the use of rushing to view them on their death bed? No glimmer of understanding in that attitude. Time, I decided to think about why my relatives have come to this. What's keeping them away now, I wondered, while Mom's still alive and kicking?I began with the present and worked backward. Over the last few years I've become exasperated with the implicit dictate that when family visits we are to adjust to them, their requirements, and their beliefs about the various toxicities with which Mom's and my life together might infect them, while continuing to maintain those qualities with which family members are familiar, in which they take pleasure and which assure they will feel as though they've maintained a meaningful connection with Mom. Funny, though, before the edict to adapt, adapt, adapt wore me (and sometimes Mom) down to the point of not wanting to do this anymore for relatives who were refusing to adapt to us, from the time I decided it was not only necessary but desirable for me to be Mom's full time, full service, always-there companion and caregiver, there has appeared among my relatives an obliquely expressed tension implicit in such observations and questions as:The infamous, "Take Care of yourself";The sympathetic, "Don't you miss your past life?"The meant-to-be-supportively-provocative, "What will you do when Mom dies?"and the inevitable silent questions, some of which I can imagine with what I consider to be some accuracy:"If the caregiving sibling doesn't consider her life inviolate, am I wrong in thinking my life is?", and"Maybe, when one gets to be old, one no longer sees the sense in avoiding burdening their children with their elder care...omigod, what if I start feeling like that? Isn't that selfish? Doesn't that mean that I will become one of those parents who will plague, rather than bless, my children's lives?"In one way or another, over the years, I've responded to these questions directly to family members and ruminatively through my journals because they are important to me. My answers, though, have never been sufficient for my relatives. In some cases they've been considered irresponsible and insane. The tension has continued.Trying to identify the root of the tension, I realized that in doing what I'm doing with our mother and insisting on doing it in the most involved and meticulous of ways, far from doing my relatives a favor so that they wouldn't have to worry about Mom, I've betrayed them.When my maternal grandmother began to dement, her daughters and their families were united in picking up the slack, first by sharing shifts of companionship and maintenance while Grandma remained home in Prescott; then in Scottsdale, where Grandma was moved so the shift taking would be easier; then in my aunt's home, where Grandma was moved when it became obvious that she needed continual watching, mostly by professionals, since everyone else was employed in the world of commerce; finally, in the last half year of her life, in a nursing home when the care she needed was beyond their financial and emotional capacity. During all stages, the family was united. During all stages they agreed that changing Grandma's life so they could continue with their own lives and still have Grandma close was not only the right but the smart thing to do.That's not what happened in our family. One of us, me, stepped out of line. One of us said, "Okay, I'll change my life to incorporate my mother's. I'll focus on her life as consciously and meticulously as I focus on my own. If changes need to be made, my first priority will be to see what changes I can make in my life to accommodate the changes in hers. Further, instead of thinking of it as a sacrifice and a duty, I'll consider it an adventure, a learning experience, a chance to get to know her as I've never known her, an opportunity to expand my skills, perceptions, mind and heart."When I did this, despite all my and my sisters' attempts to make my choice appear to be beneficial to all, what I actually did was unwittingly declare that we were no longer united.This, I think, is most likely the primary reason why, when one member of an extended family assents to give full time, intense companionship and care to one or more of a family's Ancient Ones, families fall apart. There are other reasons, especially when everyone's trying to provide, everyone's trying to split the "burden", everyone's trying to negotiate the difficulty of maintaining some kind of dignified, stable surround for the Ancient One. When one family member disagrees with society, though, and decides to recognize Ancient needs that most of us won't acknowledge because we're afraid our own needs will get lost in the shuffle and we'll lose what lives we think we have and, anyway, it seems "right" that the Ancient should lose what appear to be their dwindling lives to what appear to be the thriving lives of those younger, that disagreement becomes betrayal.I've witnessed the opposite twice in my mother's family and once in my father's family. When a family decides it's best "for everyone" to put an Ancient One in a nursing home, assisted living facility or surrender her care and companionship to the professionals, the siblings unite in a sense of shared relief, loss, grief and shame: Relief because everyone believes their lives have been spared, well, something horrible, surely; loss because everyone knows (though rarely does anyone acknowledge) that they have set the Ancient One on a journey which will render her a stranger to everyone; grief because, well, that's the way of life, isn't it; shame because of the discomfort of having to negotiate the conflicting messages from our society that we're supposed to be able to handle everything, do it all, despite the odds, except, message two, care for our Ancient Ones, the professionals should be doing that, so, here we all are, not completely sure whether what we've done is "right" or "wrong".The relief, loss, grief and shame aren't nearly as important, though, as the unity. No one feels as though anyone has endured more or less than their share of the circumstantial and psychological "burdens" of answering the question, "What should we do about Grandma?" There is no subterranean questioning and reworking of family values. No one is standing out in the crowd. Rule by Mob is Rule by Right. We all agree. We're all safe because We're Not the Only Ones.The person who decides that the societally prescribed treatment of Ancient Ones isn't a treatment with which she can live is the renegade. What she decides and what she does calls into question her relatives' values, society's values. Suddenly, everyone who knows her, relative or not, finds themselves harassed to question their own values, their hearts, their society, their lives. Considering these questions is an enormously uncomfortable task; so uncomfortable that we spend a great deal of our lives trying, often successfully, to avoid them or defending ourselves against them instead of doing the hard work that is involved when we face them down. Thus, the person who decides to break away and face those questions every day in the acute presence of the Ancient One becomes a reminder of all that the rest of us find ourselves unable to face. That's reason enough for dissension in the family ranks, dissension so potent that it is frightening to confront and easy to avoid.What are the details of the betrayal of the full time family caregiver? She has betrayed her family by listening more closely to the Ancient One; allowing for the Ancient One's changes in perception and decision; embracing the inconvenient, risk and compassion more thoroughly than anyone else in her family. Later, when she's hit her stride, she betrays her family by insisting, more through action than words, that the companionship she's offering, the care she's giving, isn't a career, it's life, and life, to her, is more important than career. She heightens the betrayal when it becomes obvious that she considers that in taking care of the Ancient One she is taking care of herself. The acme of her betrayal comes when she declares, either through action or words, "We've done more than enough adapting to you. Time for you to adapt to us. Refamiliarize yourselves with us. Help us. If you can't, at least stop thanking me. I'm not doing this for you, I'm doing it for our Ancient One and for me. Stop sentimentalizing me as a sacrificial saint."One way to avoid the dissension is to avoid the situation, which means avoiding the caregiving family member and the Ancient One. This is where the isolation of the caregiver begins. The other avoidance technique is to blame the dis-eases (see Sam Keen's "To A Dancing God" for an explanation of "dis-ease") of Old Age rather than the fears of the family. News Flash: Dementia of any sort doesn't create family dissension. Neither does physical frailty. People create family dissension.This is a revelation to me. Since I became my mother's final companion, I spent years trying to make it so easy for my sisters to keep up with my mother and me that I almost broke my figurative back. I believed it was all on me. I'm the one who's rebelling, I'm the one who should come up with the solution. Turns out, when family and society are involved, adequate solutions can't be discovered by one person.It's time for us to pillage and plunder The Land of The Soon to Be Dead out of existence. It's time for us to consider that if one is alive, even if it's a good bet that The One will die tomorrow, she's alive today, changing and, yes, growing. It's time to remember that while we may cure many of the physical conditions now implicit in Old Age, Old Age will always be with us and will remain, in some measure (although it could be less so) mysterious to Us Who Are Not Yet Old. It's time to stop holding an octogenarian or nonagenarian to perceptions and decisions she made in mid-life, such as declaring that she doesn't want to be a "burden" to her children and buying a long term care policy (both of which my mother did and both of which she later repudiated), decisions she made out of the same fear of Old Age to which we are victim but which she has, since, conquered by the inevitable act of becoming old. We don't hold 45 year olds to the decisions and perceptions of their nine year old selves, or their 15, 25 and 35 year old selves. What makes us think that we have the right to do this to The Old? It's time to realize that we consider our full time, in-home family caregivers and companions to Ancient Ones betrayers of an implicit and insidious family trust, a trust that will, eventually, deny us our family and our membership in society if we don't begin questioning it, now.There are still discoveries to be made about our Ancient Ones as people, as individuals. Relationships with our Ancient Ones remain loose enough to change and develop, even in the grips of dementia. Wanting to be familiar with Our Ancient Ones is the reason we should want contact with them, primarily on their terms, even if those terms have changed since they were in mid-life, as this is the most generous and enlightening way to know anyone. While it is true that a primary parental responsibility is to civilize children, The Old have already been civilized. When we decide that Old Age is a process of devolution and the rest of us must grab The Old One and forcibly maneuver her backward so that we can stand to be around her or easily abandon her to The Land of the Soon to Be Dead, we do her, and ourselves, a great indignity and we marginalize those of us who feel compelled to remain side by side with our Ancient Ones. It does us no good to simply want to view Our Ancient Ones before they die. We need to remain in close, adaptive contact for the health of our Ancient Ones; for the health of our caregivers; for the health of our families; for the health of our society; for our own health. We need to be doing this together, enfolding, rather than fearing, the choices of the family caregiver, the one who's chosen to directly embrace The Ancient One, or we'll all be traveling Ancienthood isolated from our families, our friends and our society. Oops! That's what we're doing now, isn't it?!? Better get cracking, people.INTRODUCTION:I am a full time, companion and intense needs caregiver for my Ancient One mother. I assented to do this, in response to her request, after six months of consideration, in December of 1993. Since 1999 I've kept a group of journals detailing our adventure together, the main one housed at The Mom & Me Journals dot Net. Please feel free to contact me, if you wish, at gailraehudson@themomandmejournals.net. To avoid your message being deleted as spam, please insert the following into your subject line: "The Unforgettable Fund".Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511774 Tue, 06 Mar 2007 15:25:00 +0100 511774 http://theunforgettablefund.blogspot.com/2007/02/guest-host-deb-peterson.html It's both an honor and a pleasure to guest host The Unforgettable Fund while Patty is away. My name is Deb Peterson and almost a year has passed since I began my own blog, The Yellow Wallpaper. When I posted my first entry on March 18, 2006, I knew very little about blogs and their potential. My mother had been diagnosed with probable Alzheimer's Disease in January, 2005, and I had been living with her ever since. During that time I'd read whatever I could get my hands on about the disease, but I still wasn't satisfied with what I knew.From my reading I learned a lot about Alzheimer's stages and trajectories and medications, but I still knew very little about the caregiver's experience. How do you redefine "hope" after the future disappears behind the blunt immediacy of this illness? What do you talk about with the beloved parent whose world has been reduced to a collage of delusions and fears? How do you feel on the morning of the day that you place the care of that parent in a stranger's hands?My blog began as the proverbial cry in the wilderness, only I discovered that it really wasn't a wilderness out there. Between posts I'd wander the internet, listening for other voices, and before long I heard them. I left a timid comment on Michael Murphy's Smoke & Mirrors blog after reading a beautiful post about his relationship with his late mother, an Alzheimer sufferer. Almost immediately he responded warmly. My next discovery was Gail Rae Hudson's Mom and Me Journals. I couldn't believe my luck--I left a comment and the next thing I knew, Gail and I had a conversation going. I then found Paula Martinac's Dementia Blues--another conversation, another friend. And then Mona, Karma, Bailey, Mike, Patricia--all of us conversing and finding the patterns in our lives as caregivers.I found The Unforgettable Fund by way of a comment Patty left on Bert Piedmont's Had a Dad blog. Not only has Patty been there for me with generous and supportive words, especially during my mother's most recent difficult transition to assisted living, but she and her family back up their concern with the remarkable work they do on behalf of everyone who finds themselves in the shadow of this unspeakable disease. After caring for their own father through his illness they continue to fight the fight in his memory.Had I not begun my own blog, I might not have met these wonderful people. I know I am a better caregiver because of their example and support. Although we have found each other because of our distinct as well as similar experiences with dementia, we might easily have become friends under other circumstances. I think of our conversation as one pattern in the texture of the internet, and I believe that our conversation is contributing to a renewed view of the bond between the Alzheimer sufferer and his or her caregiver.Alzheimer's Disease is not a condition that is suffered only by a portion of our older population. As long as our government turns a blind eye to the problems--financial, logistical and psychological--of caring for its vulnerable members, then we all will suffer from it. I hope to post again soon about my own struggle to take care of my mother, so I'll close now by thanking Patty and her family for the opportunity to share my story. I'm glad to be here.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511775 Wed, 28 Feb 2007 14:51:00 +0100 511775 http://theunforgettablefund.blogspot.com/2007/02/guest-hosts.html Over the course of the past eight months, I have had the privilege of reading a number of exceptional blogs that deal with the subject of aging in a most illuminating way. They are, in no particular order:The Mom and Me Journalsby Gail Rae HudsonThe Yellowed Wallpaperby DebHad a Dadby Gevera Bert PiedmontThe Tangled Neuronby Mona JohnsonSince I have been called out of town and won’t have the opportunity to post for the next month, they have graciously agreed to “guest host” The Unforgettable Fund blog in my absence. I hope you enjoy meeting them as much as I have, seeing that there are as many things that make us different as there are that make us the same.I would be remiss in not mentioning there are dozens if not hundreds of blogs I have visited that do a fantastic job of documenting the experience millions of us are having with our aging parents and loved ones. A few I have grown to admire are:Fading From MemoryJewBu QuestMighty IrisAnd with that, wish me well on my trek to the frozen north. I feel the blog couldn't be in better hands. Will be back in the Spring.Patty McNally Doherty - one of millionsP.S. I would also like to mention Dr. Malcolm Leissring will be posting "From The Lab" as soon as he can take a breather from writing grants. Rumor has it, it will be soon!Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511776 Tue, 20 Feb 2007 23:02:00 +0100 511776 http://theunforgettablefund.blogspot.com/2007/01/from-vault7-jan-2007.html Hello Everybody,Here is a donation update for December 2006.Direct donations= $2,000.00 (Made directly to Scripps in the name of The Unforgettable Fund.)Online donations=$4,951.50Mailed donations=$ 425.00Total for December=$7,376.50Here is a summary for 2006. The fund began in May 2006.May - June 2006= $10,534.62 June -July 2006= $ 71.58 July - August 2006= $ 553.32 August - September 2006= $ 115.00 Sept - October 2006= $ 200.00 October [second half]= $ 425.63 November 2006= $ 853.94 December 2006= $ 7,376.50 Total contribution for 2006 = $20,130.59 A tremendous 'thank you' goes out to everybody who made 2006 a success for The Unforgettable Fund.Looking forward to 2007,Allan DohertyFROM THE VAULTDon't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511777 Sat, 13 Jan 2007 06:30:00 +0100 511777 http://theunforgettablefund.blogspot.com/2006/12/ardus-unforgettable.html I don't think I've ever met a woman as kind and gentle, warm and loving as Ardus Sher. Her passing this month deeply saddened all who knew her. How can we find comfort without her gentle presence in our lives?Years ago, her late husband Alan gave me sage advice."When you don't know what to do, do the next right thing."With that in mind, in honor of the beautiful, unforgettable Ardus, I offer these pages of memories. Her son Richard and her daughter Carrie bravely delivered two of the most moving tributes at her funeral and with their permisssion, I have posted them at The Unforgettable Fund.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511778 Sun, 31 Dec 2006 00:35:00 +0100 511778 http://theunforgettablefund.blogspot.com/2006/12/from-heart4-dec-2006.html Tales from the B-List There were good days and there were bad days. When one of us was on my father's B-List, it was a bad day. To get on the A-List, one need do nothing more than walk into the room and say hello to my father. He would smile and laugh a hello, as if he hadn't seen the A-List member in years. To get on the B-List, one didn't have to do anything more than walk into the room. either. My father would scowl and demand "What the hell are you doing here?"We came to realize, it didn't matter who WE were, it mattered who HE was at that particular time of day. To be on the A-List was a gift from above. All went smooth, there was complete cooperation, and caring for my father was a pleasure. Nothing was difficult, everything was a breeze. It was almost laughable to think people complained about caregiving. It was a piece of cake!To be on the B-List was punishing. Nothing worked, there was argument and challenge, and caring for my father was a nightmare. Everything was questioned, nothing went smoothly. It was tears of frustration, not just sweat, we mopped from our brows. Caregiving was hell.Between these two extremes, we passed eleven years of our time with my father. Finally understanding the rules of this twisted game - Alzheimer's wins/you lose - we upped our defiance level. We don't like to lose. We devised the A-List/B-List Theory. We turned it into OUR game, and fuck Alzheimer's. To get on the A-List took sheer luck, but to STAY on the A-List required much skill. No arguing, constant reassurance, gentle suggestions, slow, quiet, peaceful hours. But experience taught us, you could fall from a coveted A-List position without warning and all hell would break loose. You could move off dreaded B-List membership, by gritting your teeth and waiting for it to pass. This wasn't any fun at all. Or, you could try to work the odds and regain A-List positioning. Did I mention we don't like to lose? We read books, we asked people questions, we queried web sites and there was little that actually applied to our particular situation. Years ago, information was even harder to come by than it is today, blogs didn't exist, at least not in our realm, and we wouldn't have had the time or energy to invest in the search anyway. The Alzheimer's "experts" we did contact and who's advice we paid thousands of dollars for were such a joke I'm dedicating a future post just to them...Basically, we were left to our own devices and, oh my goodness, were we ever in strange territory!The biggest and hardest moment was when we embraced the truth that my father had no memory of who we were, Alzheimer's had swallowed us whole. But as thinking, creative and loving daughters, we were also free then to establish new relationships with our father. I remember convincing him once I was a doctor and licensed to brush his teeth. My sister brilliantly discovered if she would leave the room when she was B-Listed, tie her hair back, put on red lipstick, and re-introduce herself to my father, bingo, she'd be A-Listed. My other sister would humor him by pantomiming things he knew from long ago, her flying like an airplane around the living room comes to mind, my father's eyes glued to her every move, nodding in agreement. A loved, hired caregiver had quite a unique communication system devised of beeps and chirps, like a strange bird, and my father would be entranced, copying the odd language in reply. For awhile, if we burst into a hearty rendition of "Happy Birthday" my father would find himself joining in with much gusto and the day would shift from confrontation to celebration.We found our skills by accident and clung to them until they failed us and new ones had to be discovered. It was grueling, relentless work and our success can only be credited to the fact we shared the burden with each other. We couldn't have done it alone, at least not in this household. It was hardest on my mother, as can be expected. She had had the longest relationship with my father and her habits were engrained. She would never, ever deceive him, no matter what, whereas my sister and I, well, hadn't we spent a good deal of our teenage years doing just that? It was easier on us. And we became quite good at it. To get him to move from one room to another might be accomplished by saying we were going for a drive, let's go to the car. He loved car rides. Up he'd pop, ready to go, but the path would really lead to the kitchen for lunch. If we had asked him if he wanted lunch, he would have said no and there would be no talking him into it. But finding himself there with a meal on the table, he'd sit down and eat, never thinking about the car ride. Another thing that helped was to act as surprised as he did. How did this lunch get here?! Who knew you liked ham sandwiches?! Who could have made this?! What did help my mother, though, was devising the "A-List/B-List" Theory. We were able to help her feel less responsible for having "done something" to trigger his wrath. She was in good company, with her daughters, no matter what list she was on. It was one of our many methods for coping with my father's dementia. Anyone looking into our home would have found all of us, not just my father, completely certifiable. When we loved him, we embraced his world, too. We just didn't have the disease, or the mercy of forgetfulness it confers on those who do. We remember all of it.What Alzheimer's made of my father was beyond our control, what it would make of us was entirely up to us.This is not a place any of us want to visit. Those of you who find yourself here, you're not alone, as hard as that is to believe, there are over four million of us. As usual, I ask any of you reading this who are in a position to help, fund the research to end this disease. Visit The Unforgettable Fund, there is no amount too small to make a difference. Help us B-List Alzheimer's.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511779 Sat, 16 Dec 2006 18:07:00 +0100 511779 http://theunforgettablefund.blogspot.com/2006/12/from-vault6-dec-2006.html Hello Everybody,Here is a donation update for November 2006.Online donations= $328.94Mailed donations= $525.00Total = $853.94This brings the total contributions to:$12,754.09Thank you to the individuals who are making monthly and bi-monthly contributions, as well as everybody else who has participated.Allan DohertyFROM THE VAULTDon't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511781 Fri, 08 Dec 2006 22:11:00 +0100 511781 http://theunforgettablefund.blogspot.com/2006/12/from-lab5-dec-2006.html by Dr. Malcolm Leissring, Scripps FloridaQ: What does IDE look like?A: Pac-Man…...on a dietLast time, I reported on two very exciting developments regarding insulin-degrading enzyme (IDE), a protease that destroys beta-amyloid by chopping it into pieces. One of the most important advances was the unveiling of the 3-dimensional structure of IDE. This information is priceless, and useful for a large number of applications, particularly for understanding how the enzyme functions and also for designing drugs.My job on this blog, together with Susan Shepard, is to convey these scientific advances in a way that non-scientists can understand. If you’re anything like me, then one of the easiest ways to understand new concepts is through pictures. Now that we have the 3-dimensional structure of IDE, I can show you pictures of this most important and exciting protease.The structures show that IDE consists of two bowl-shaped halves connected by a flexible hinge. These new structures of human IDE, together with the structure of a bacterial relative of IDE, show that the protease can open and close, in a manner not unlike the main character in the familiar video game“Pac-Man." Take a look at this series of pictures to get a feel for what I mean by this:Now, from these new structures, came a very significant discovery. It turns out that the two halves make extensive contacts with each other when the mouth is shut, and this tends to keep IDE in the closed state. I like to use the analogy of a “latch,” like the magnetic ones on some purses, for example, which is represented by the green bits in the following picture:Normally, the latch is engaged, meaning the “closed” state predominates:What does this mean for IDE function? It means that IDE is a bit different from the Pac-Man we all know and love. Because IDE’s mouth is usually closed, it can’t gobble up all the dots (e.g., beta-amyloid molecules) it encounters. To help get this message across, I collaborated with Adam (“AJ”) Brockman, a very talented young graphic designer. The following movie makes the point that IDE can’t normally gobble up all the dots because his mouth is usually closed: (click on image to view animation)Now, as we discussed last time, the team that uncovered the structure of IDE, led by Wei-Jen Tang, showed how very important this “latch” is to IDE function, and to the potential development of new treatments for Alzheimer’s. They introduced small changes in IDE that disrupted this “latch” mechanism. To signify these changes, we have colored the latch red instead of green in the following picture:By disrupting the latch, these small changes cause IDE to be more likely to adopt the “open” configuration, like so: Hopefully you can guess the punchline: disrupting the latch allows IDE to gobble up more dots, just like the original Pac-Man. Here’s another movie of AJ’s that makes this point: (click on image to view animation)These movies vividly make the point that disruption of IDE’s latch essentially puts a turbo boost on IDE. The above movies depict an increase of 333% (3 out of 10 dots are gobbled up in the first movie, versus 10 out of 10 in the second). In reality, the mutations Dr. Tang’s team made caused an increase of 4000%! To depict just how big of an effect this is, the first movie would have to show just a single dot getting gobbled up (1 out of a total of 40), with the second movie showing all the dots getting gobbled up (40 out of a total of 40).What does all this have to do with Alzheimer’s disease? Well, the changes that Dr. Tang’s team made to IDE are relatively small, small enough that they should be able to be mimicked by drugs. That is, there is a strong prediction that small molecules can be found that also disrupt IDE’s latch, and also turn on the “turbo boost.” Indeed, my lab has already found some compounds that activate IDE by ~350%, essentially the same amount that the movies show. There’s a lot of work yet to do, and most likely much better compounds will eventually be discovered, but the idea that a drug can be found is a dramatic development, that should give us all a lot of hope.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511780 Mon, 04 Dec 2006 22:06:00 +0100 511780 http://theunforgettablefund.blogspot.com/2006/11/how-my-sister-changed-my-world.html If anyone's wondering, the young woman in the video - "Richard McNally: A Life Forgotten" - is my sister, one of our father's many caregivers. I keep coming back to a conversation she and I had. Our father was a very healthy man, no health issues other than a mind riddled with plaques and tangles. He was sitting on the back patio - much of our time was spent on that patio - my sister and I were discussing hiring someone to help us. She was standing beside him, had just finished shaving his face, brushing his teeth, when she noticed his collar was standing up on his shirt. She smoothed it out, patted it down gently, and said, "No one we hire would do that." And that, as simple an action and as insignificant a statement as one could ever make, summed it up perfectly. And it scared the daylights out of me.Surely a man's collar doesn't determine his quality of care, does it? It does if you know the code.It isn't the big things that matter, it's the million and one small things. And with Alzheimer's care, it's ALL small things. Nursing homes stand as testament to that fact. There isn't a nurses aide on the planet who will disagree with me - there's not time to see to all the small stuff. And, in my opinion, that's why they crash and burn with the big stuff.With Alzheimer's in our home, a single caregiver couldn't do it all without a lot of help. Real hands-on, attuned-to-the-unique-situation, let-me-in-the-trenches-with-you, move-over-I'm-coming-in, help. There were just way, way too many small things. And if the small things weren't covered, the big things crept in with alarming speed. Dad is lost, but I'm on deadline with a job! Dad is over at the neighbors, but I have to take the kids to baseball practice! Dad is fighting with the "man in the mirror", but I'm out of town! Dad has a rash, but I don't have a car and the pharmacy doesn't deliver! Dad has a fever, but the doctor won't come to the house! Dad fell down, but he's too heavy to pick up! Dad made Mom cry, but I'm in the middle of dinner! Dad won't get up, but I have to get the laundry done! Dad took the keys, but I am sick in bed! Dad, but! Dad, but! Dad, but!In our eleven years of co-caring for our father, when it came to what had to be done, we struck the word "but" from our vocabulary. For me, the most significant task my sister performed was the smoothing of our father's collar. The love of the man wearing the shirt, the determination that patted it down, the awareness that saw it was out of place to begin with, taught me more about Alzheimer's disease and the tremendous care it required than any of the innumerable "experts" we had consulted on the subject. She learned the code and was teaching it to me.Some of you will recognize my sister's contribution. Everyone else reading that the simple act of smoothing a man's collar changed my world, will think I'm nuts. But that's part of the code. When my father died, we started The Unforgettable Fund to get funding into the Alzheimer's lab at Scripps Florida. Since May, by word of mouth alone, we've donated almost $13,000, every penny going to research and research only. Our intention is to beat Alzheimer's disease. No buts about it. Please help if you can.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511789 Sat, 25 Nov 2006 17:37:00 +0100 511789 http://theunforgettablefund.blogspot.com/2006/11/in-my-mothers-words.html There are over 4 million people suffering from Alzheimer's in America. This is one story - my father's.This short video was donated by Table13 and Jonathan Shepard, a young film maker, in support of The Unforgettable Fund's policy of spending NO MONEY on anything but research. It starts with a perfectly blank screen, and then the story begins...All donations to The Unforgettable Fund go directly to Alzheimer's research. Please help.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511791 Fri, 17 Nov 2006 19:54:00 +0100 511791 http://theunforgettablefund.blogspot.com/2006/11/from-heart4-nov-11.html My father and I would sit on the back patio to get some fresh air, we’d watch the world go by. Cars, people running, walking, pushing strollers. Life was so normal “out there” and so crazy with Alzheimer’s inside our house. My father would wave at someone. They wouldn’t wave back. He’d wave harder. They wouldn’t wave back. He’d get up out of his chair and wave, this time yelling Hey YOU! They’d look at him, get a little frightened and move faster down the sidewalk. He’d head for the edge of the patio, ready to take on the world. It would take all the cajoling I could come up with to calm him down, return him to his seat. The next person would go by, and we’d start the entire process all over again. I figured we’d just have to keep him inside from now on, he was too unmanageable, surrendering still more ground to Alzheimer’s.One day I went to the house. My mother had made a large sign, with letters made of red tape. It said “PLEASE WAVE”. She would hold it up behind him when he’d spot a passerby, they’d see her sign and wave, he would be happy, and life would be tricked into “normalcy” again. I keep that sign on my bookcase to remind me of how pathetic our resources are to cope with Alzheimer’s yet how creative my mother was in beating it back. Alzheimer’s doesn’t win every round. She fought for my father’s quality of life for eleven long years. She was strong, she was determined, and she never gave up. He smiled because of her. He waved because of her. And he enjoyed the sunshine of his back porch for years. He died in January of this year, and we STILL have nothing more capable of stopping Alzheimer’s than a half-empty roll of heartbreakingly red tape. We can do better than that. You can help. If you read this and understand what it’s like to live with this disease, if you have a few dollars, donate them to The Unforgettable Fund and we’ll see that it gets into the lab for Alzheimer’s research. PLEASE HELP.Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511790 Sun, 12 Nov 2006 01:21:00 +0100 511790 http://theunforgettablefund.blogspot.com/2006/11/from-home4-nov-10.html Looking back over my notes, I saw an entry that was not funny at the time but, it is now. "Dick was not in a good mood at bedtime, so he went to bed fully dressed, shoes and all!"Don't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511793 Sat, 11 Nov 2006 00:28:00 +0100 511793 http://theunforgettablefund.blogspot.com/2006/11/from-vault5-nov-2006.html Hello Everybody,Here is a donation update for October 2006.Online donations= $125.63Mailed donations= $300.00Total = $425.63This brings the total contributions to:$11,900.15Thank you very much to all who have participated.Allan DohertyFROM THE VAULTDon't forget without a fight. Support Alzheimer's research. (Source: The Unforgettable Fund) The Unforgettable Fund blogs http://www.medworm.com/rss/comments.php?id=511784 Mon, 06 Nov 2006 17:05:00 +0100 511784 http://theunforgettablefund.blogspot.com/2006/10/from-lab4-nov-2006.html by Dr. Malcolm Leissring, Scripps FloridaQ: What’s so special about insulin-degrading enzyme?A: Let me count the ways….For those new to this blog, this is the latest entry in a series describing what scientists know about Alzheimer’s disease and how that knowledge is being applied to the development of new treatments. We’ve come a long way, describing how the main culprit is the excessive accumulation of a small protein fragment called beta-amyloid, how this accumulation is based on an imbalance between its production and its destruction, and how the key players involved in the destruction of beta-amyloid are enzymes known as proteases, which chop it into pieces. Last time I gave a laundry list of proteases that can degrade beta-amyloid, and this month I am going to explain why my lab is especially interested in one protease called insulin-degrading enzyme (IDE). Last month, grant deadlines precluded me from adding a blog entry, but—to make up for it—I have two VERY exciting recent developments to tell you about. Insulin-degrading enzyme (IDE) was actually the first protease to be reported to be able to destroy beta-amyloid, way back in 1994. The original paper received scant attention however, probably because the study relied on brain tissue that was basically put in a blender—hardly a refined experiment! It turned out however, that the original investigators were on to something. A few years later, Dennis Selkoe, my post-doctoral advisor at Harvard Medical School, discovered that IDE was the main protease responsible for degrading beta-amyloid even in intact cells grown in a dish. This did not halt the skepticism however, for a very important reason. Why? Because IDE is mostly present on the inside of the cell (the “cytosol”), whereas beta-amyloid is secreted outside the cell. Many, many papers had shown that IDE was either present on the cell surface or secreted like beta-amyloid, but this did not convince the skeptics—they basically thought that what was really happening was a few cells were breaking open and spilling their guts, and IDE along with them, meaning that people were basically studying an artefact. Scientists thought this, because we know the mechanism by which most secreted proteins get out of the cell, and IDE does not have what it takes to be secreted by this route.This leads me to the first exciting and surprising discovery, which was published in the October 20th issue of Cell, one of the most prestigious journals in all of science. This finding was from outer space: IDE, it turns out, is the “cellular receptor” for varicella zoster, the virus that causes chicken pox and shingles! A “cellular receptor” is basically a handle on the cell surface that the virus grabs onto, which allows it to enter into the cell. Why does this disprove the skeptics? Because (a) the virus is far too large to enter the cell on its own, and (b) cells that ma