It has been quite a day. The Early Stage Summit was held this afternoon. Our member, Trish, and her husband Bob were panelists, discussing what it is like to live with AD. Lisa Genova, author of Still Alice was the keynote speaker. I will tell you more about it when I return.
Check the National News tomorrow (Tuesday) morning and evening - We participated in a Candlelight vigil at the Lincoln Memorial. Our very own Tony Pesare was one of two speakers. When I return, I will print his speech -it was so moving - he spoke about the ravages of EOAD on his family, and there was an audible gasp in the crowd when they heard Tracy's age. She was diagnosed at age 39, and died at age 43.
Maria Shriver was in the crowd, but I did not see her. I believe she will be part of tomorrow's program.
There are over 500 delegates here from 49 states and Canada. The only state not represented is Alaska.
It is now 10 PM, and I have to be at breakfast at 7 AM, so I am going to bed, but I wanted to check in and let you know what is going on. Tomorrow's program goes from 7 AM until 10 PM, and then on Wednesday, we spend all day on Capitol Hill.
We know you are tired to the bone, but I would like to thank you for the great job you do of representing ALZ from the caregivers point of view, keeping this site and being a caregiver yourself. Thank you SO MUCH...you are great!...Ann
I moved this comment from a separate DC topic to this one, so all information about the DC Forum can be found in one place. The programs Nancy B mentions below are events we delegates will be attending. joang
CommentAuthorNancy B CommentTime8 hours ago edit delete
I received this information from the Houston Alzheimer's Association...They asked us to spread the word. We should try to listen in...I'll have to Record the C-Span meeting because that will be at 7:30 AM CST... and much earlier for you west coast people.
Alzheimer's Association President and CEO Harry Johns will appear on C-Span Tuesday, March 24; 8:30 - 9:00 AM, (EST) to introduce the latest frightening statistics from the new Alzheimer's Association 2009 Alzheimer's Disease Facts and Figures Report.
Alzheimer's Study Group members Newt Gingrich, Sandra Day O'Connor, and David Satcher will appear on National Public Radio's Talk of the Nation on Wednesday, March 25; 2-3 PM (EST) to discuss the Alzheimer crisis.
Newt Gingrich is a great guy to have in our corner, I wasn't aware that he was connected any way with Alzheimer's. Does anyone know if AD has affected someone in his family? If so, he would make an excellent National Advocate for Alzheimer's Disease and Caregivers.
We were at a conference with him a few years ago. As I recall, he said someone like an Aunt or Uncle had it. This AD Study Group has been going on for several years now, and they have some heavy hitters participating. Let's hope they can make a difference.
Alzheimer's Association President and CEO Harry Johns will appear on C-Span Tuesday, March 24; 8:30 - 9:00 AM, (EST) to introduce the latest frightening statistics from the new Alzheimer's Association 2009 Alzheimer's Disease Facts and Figures Report.
View the interview: http://www.c-span.org/Watch/watch.aspx?MediaId=HP-A-16701
There was an article about Maria Shriver and her Dad in AARP. IMO I thought the article was too short and did not say enough about the disease. I am glad though that she at least talked about it and that something was written.
I just watched Harry Johns' interview on C-Span, thanks to Guy. Amazing statistics! (Horrible statistics!!!) The increase in cases over the past ten years is unbelievable.
You're all welcome. I'll try to post the url over at NPR for Alzheimer's Study Group for anyone who misses it.
Some from last year:
The Senate Committee on Special Aging held a hearing that focused on the future of Alzheimer's disease and current breakthroughs and challenges. An estimated 5.2 million Americans of all ages and one in eight persons age 65 and older have Alzheimer's. The panel of witnesses testifying and responding to committee members questions talked about the need for increased funding for research, providing support to individuals with the disease and their families, and protecting those with a predisposition for the disease from discrimination.
All Things Considered, May 14, 2008 · Retired Supreme Court Justice Sandra Day O'Connor testifies Wednesday before the U.S. Senate's Special Committee on Aging about her husband's struggle with Alzheimer's. It is the first time O'Connor has spoken publicly and at length about the disease. She urges Congress to speed research on finding a cure. Her husband's diagnosis was the main reason she stepped down from the court in 2005. She says he is "not in very good shape."
May 14, 2008, Washington, DC – Retired U.S. Supreme Court Justice Sandra Day O’Connor and Former Speaker of the House Newt Gingrich presented testimony to a special hearing of the U.S. Senate Special Committee on Aging, convened by Chairman Senator Herbert Kohl (D-WI) specifically to hear updates on the fight against Alzheimer’s disease. This was Justice O’Connor’s first public statement about her commitment to fighting this disease that has struck her husband, John, and over 5 million other Americans.
Everything related to last year's Public Policy Forum, including a link to Justice O'Connor's testimony is on my home page -www.thealzheimerspouse.com, on the left hand side -scroll down to the Capitol building picture.
The final Alzheimer Study Group final report will be released tomorrow morning at 10:30 AM. It will be available on the Alz. Assoc. website in PDF format.We were given a sneak peak summary today, but were sworn to secrecy until tomorrow's release.
I hope you saw last night's candlelight vigil on the news tonight. You would have seen Tony up on the podium. I will have pictures and the text of his moving speech posted on the website when I return home.
The Florida delegation has time built into our schedule tomorrow to be able to attend the Senate hearing on AD in which Newt Gingrich, Sandra Day O'Connor, and Maria Shriver will be testifying. I met Ms. Shriver today for a few minutes. She introduced a presentation on the upcoming HBO special on AD. She is gracious and down to earth.
Gotta go to bed. If I'm still standing after running around Capitol Hill all day tomorrow, I will check in again tomorrow night.
Thank you for the update, Joan. I did indeed see the vigil, on ABC news with Charles Gibson. It was very moving. My thanks to you and all the other folks who are in Washington on this very vital mission.
My daughter e-mailed me that Sandra Day O'Conner is talking on AD on PBS "Talk of the Nation". She said I could get it on Chicago Public Radio by going to www.wbez.org, the click on Listen Now. It will be on at 2:00 PM EDT today (that's in 20 minutes!!!)
I'd appreciate some feedback from y'all about an e-mail that I propose sending out later today to everyone on my e-mail list, attempting to capitalize on the flurry of AD news in the media in the past few days and set the record straight that AD is more than just a short term memory problem. It's long, so I'll send it in a separate message and hope it isn't so long that I have to break it into parts.
Like me, I expect you’ve seen recent news stories on TV or in your newspaper citing some very sobering facts and figures about the growing prevalence of Alzheimer’s disease and its projected social impacts and dollar costs as the baby boomer generation ages. I guess November was actually Alzheimer’s Awareness Month, but recent news articles relate to a report being released today at a hearing before the U.S. Senate Special Committee On Aging -- a report generated by the “Alzheimer’s Study Group”, an independent coalition of the country’s leading experts on Alzheimer’s. By tomorrow you should be able to access this report at http://www.alz.org/index.asp .
But unfortunately, those stories deal mostly with facts and figures and don’t really delve very far into the “gritty” aspects of the disease -- doing little to dispel the widely held image that it’s mostly just a little problem with short-term memory. That’s certainly the image you’d get from those “take our pill and live happily ever after” commercials on TV sponsored by Aricept and other AD drug manufacturers – grandma can’t remember the granddaughter’s name, but after taking Aricept everything’s just fine again, etc.
But there’s far more to the disease than just short term memory loss – the reality is that it’s a progressive terminal condition that may begin with short term memory loss, but then progress over a period of typically about ten years to certain death – with lots of very difficult years in between – difficult for the sufferer and difficult for the caregivers.
Frances and I are living those difficult years now, and we’d appreciate the help of all our family and friends in spreading the word that AD involves much more than just short term memory loss, and help with drumming up support for more AD research and more help for present AD sufferers and their caregivers.
Ten years ago Frances was a beautiful, talented, happy, loving wife and mother – enjoying her “golden years”. Now, despite taking all the latest and greatest drugs intended to slow progression of the disease, she’s on track to fast becoming an eating/sleeping/excreting organism.
It began with her not being able to remember people’s names and things like locking her car keys in the trunk at golf. A year or two later she felt she had to give up golf because she couldn’t keep up with how many strokes she’d taken on a hole, and then a bit later gave up driving after incidents of getting lost driving home from the beauty shop and church. Over time she became more and more lost in her own home, and no longer able to manage things like meal planning or housekeeping or cooking. But all of these were merely inconveniences, for which I could readily compensate, allowing our lives to go on much as usual.
We were still able to get in daily two or three mile walks and socialize some up until just a bit over a year ago, but then over a period of only a few months Frances could no longer walk without assistance -- or get dressed or brush her teeth or use the toilet or shower without hands-on help. We use a wheelchair to move her from room to room, and she’ll probably need more help with eating soon. Because she’s now so feeble and has such difficulty getting in and out of the car, and also because just varying from her normal routine risks upsetting her needlessly, we’ve given up “routine” visits to her doctors or dentist or hairdresser -- she’s only left the house once in the past two months, and that just for lab work ordered by our family doc when we suspected a bladder infection.
Don’t get me wrong – I’m not complaining or looking for sympathy – things could be lots worse (and probably will be later). I’m just so fortunate in having son Bill living here with us now, allowing me to keep up with outside chores and have enough respite time from 24/7 care giving to maintain my equilibrium -- and fortunate also in that Frances is still pleasant to live with – no rages or depression like many other caregivers are having to deal with.
Unless some other medical condition intervenes, the normal progression of the disease will finally rob her of speech, then later her ability to sit up, and finally to eat – with no definite timetable for any of this – it could take years.
So that’s what Alzheimer’s disease is really like.
I hope you’ll join me in passing this on to others on your mailing list and in pressuring your Congressmen for more priority funding for AD research and caregiver help. The Alzheimer’s Association makes it easy for you – all you need to do is visit their website at http://www.alz.org/join_the_cause_write_congress.asp and let your voice be heard.
Ok Gourdchipper once I stop crying, I just need to say your email is a wonderful glimpse into the ever day journey of a AD LO. Cause as you said, it's not at all like image that's been portrayed. Thank You for sharing it with your friends, hopefully little by little we can dispel the myth about this awful disease. Rk
Amen and AMEN! .. Yours is a beautifully written - true to life - description of what Alzheimer's Disease is. - and how it affects the emotions of those left to care for them. All children, all families, and yes, ALL DOCTORS should see this. Life is not as it appears when "company is coming" or we are dressed up for a visit to the doctor's office.
I am too exhausted to write much tonight. I promise a complete accounting when I get home. We attended the entire Gingrich/O"Connor hearing today. Things are very different in DC this year compared to last year. Much more pro-active. The Forum was planned to coincide with the release of the Gingrich bipartisan ASG report. I don't know about the others, but the delegates I were with did an EXCELLENT job of raising awareness of EOAD, as well as the emotional and financial impact the disease has on everyone, whether early or later onset. The members of the ASG commission "got it right". Long story, and as I said, I'm dead on my feet. Need to leave for the airport at 7 AM. Tony was AMAZING. I will have be posting the entire text of his speech on the website.
Considering I am walking in the Memory Walk on Saturday, the DC blogs will be posted in parts. All the information is too long for one blog anyway.
I just have to go to sleep. I'll check in again when I get home.
Joan, I thought I wrote this earlier, but it didn't make it to the site. Duh, NancyB., remember to click on "ADD COMMENTS". I think you should seriously consider riding your golf cart in the "walk"..many others do that, and you need to pace yourself. You have a perfectly WONDERFUL excuse. You are running on adrenalin now..and I'm worrying about your 'crash' when the week ends. Be good to yourself!
Tie helium filled balloons all around the golf cart and you'll raise all sorts of attention that merely walking wouldn't get. (Trying to persuade her with fun ideas, now...Help me, everyone!)
I've e-mailed the following message to each of the Congressmen who represent us:
Dear Senator xxxxxxxxxx -
I hope you and your staff will take the time to carefully review the "National Alzheimer's Strategic Plan" released today by former House Speaker Newt Gingrich and his associates in the Alzheimer's Study Group in testimony before the Senate's Special Committee on Aging. My wife of 60 years is now in the latter stages of Alzheimer's disease, and having seen first hand what havoc it can wreak on both the victim and caregivers, I strongly urge you to vigorously support the objectives of the "Alzheimer's Solutions Project" recommended by the study group to focus on delaying and ultimately preventing Alzheimer's disease and to improve the care provided to present and future victims of the disease and their caregivers.
I would urge everyone to copy Gourdchipper's letter and send it to your Congressman/woman and senator.
I called Sid 3 times a day, and someone was always visiting or taking him somewhere. At night, he did what he always does - watch tv and go to bed. So all seemed fine.
As for resting - I have no plans to get out of bed on Sunday.
Glad to hear he did good and had so many visitors to keep him busy. I am sure that made your trip easier. You deserve several days in bed, snuggled up with a good book and comfy blanket. Safe Travels!
I sent mine. Did you know that if you use Firefox, you can open all the sites for your reps at once, then make a bookmark for ALL OF THEM AT ONCE. THey'll show up in a folder of their own and an option when you click on it is to open all of them at once, in the future.
Video From C-Span: http://www.c-spanarchives.org/library/index.php?main_page=product_video_info&tID=5&src=atom&atom=todays_events.xml&products_id=284849-1
The Alzheimer's Study Group (ASG) released their final report, the National Alzheimer's Strategic Plan, to assess the adequacy of current efforts to combat Alzheimer's disease and to recommend strategies to combat the disease. Witnesses testified about support for research, translating research breakthroughs into treatment, ensuring quality care, and supporting families. California first lady Maria Shriver talked about her experience as a caregiver for her father. She also discussed several advocacy projects, including her childrens book on Alzheimer's disease, What's Happening to Grandpa?, and an upcoming HBO series, "The Alzheimer's Project." Larry Butcher talked about his experience as a caregiver for his wife, and presented Alzheimer's Community Care as a patient care model.
Just clicked on this thread and have a few comments. First- JOAN, JOAN, JOAN, BLESS YOU, BLESS YOU, BLESS YOU. You represent us spousal CG's on so many levels, you will have a positive impact, for sure. LOVE YOU, LOVE YOU, LOVE YOU.
Gourdchipper, been there, done that. Ten years of caregiving I would do again in a nanosecond if I had youth & strength. For now, I hold your cyberhand in understanding and support--yours and all the others still traveling this travail. Your words are spot-on.
Everyone writing representatives, etc: You go, guys!
As for me, ironically, a few days ago someone emailed me the 2009 Alz Assn Report and I changed my column schedule to write about that. It is stunning. The stats are so over the top they are hard to believe. I ended the column w/a quote from Alz Assn CEO Harry Johns saying there are currently no treatments to prevent, delay or reverse AD. (Take those Aricept ads and shove 'em.) I realize Aricept does help some and I know research is on-going, people are certainly trying, but diseases are rarely 'cured,' consider cancer, polio, measles, etc. The best we have been able to do is, sometimes, prevention thru vaccinations, treatment of symptoms and maybe some life-style changes--but they're still there. I'm not knocking any of that, it's just that I don't look for any silver bullet for AD soon--and I'd love to be wrong. I could fill up half the magazine writing about the AD report, but my space if limited, so my overview will begin in May & continue for a few months.
My column appears monthly in Today's Senior magazine. It covers much of CA, alto not the southern part, some of NV and a lot of TX & has subscriptions throughout the country. Mostly it caters to those going on vacations, casinos, lots of gardening and other retiree activities, some info on SS, Medicare/caid, etc. But when they asked me to do an AD column (gratis, of course) I was eager to have the chance to, hopefully, educate those who know 'it can't happen to me.' Certainly, I knew it would never happen to my DH! After I was asked to do this, I contacted some other senior mags & offered the column to them--I was told that most retirees are interested in happy things--cruises, etc--did not want to hear about unhappy stuff. Just a little of what we are up against.
For those of you who are also animal lovers, this month's column (April) was about our dog 'Sophie' who was 14 & left for puppy heaven a few months ago. It told about the positive effects she had in our AD years and how animals are so helpful with illness.
I am home. Sid is fine - friendly visits and phone calls daily.
Please keep checking the home page - www.thealzheimerspouse.com - tonight, tomorrow and all weekend, as I will not only have my first hand version of everything AD that went on in DC this week, but pictures of our members who attended, and lots of links and information. I am also waiting for Tony's youngest son (12 years old) to work his computer magic and send me the pictures from Tony's camera. Tony depends on the young one to do all the techno stuff.
I will not be doing a lot of work tonight, as you can imagine, but I will have some links and pictures up. I was able to meet and talk to Maria Shriver and Lisa Geneva (Still Alice).
The closest we got to seeing the President was watching his motorcade drive TOWARD Capitol Hill as we were on the bus LEAVING the Capitol. We begged the bus driver to follow the motorcade, but something about security and secret service made that a big no-no. Besides, which, the motorcade street was blocked off.