I have moved Texasmom's and Wolf's comments on the Seth Rogen hearing to this new topic.
texasmom 2 hours ago edit delete
Joan----this comment sort of goes with your ongoing call to educate, and I wasn't sure how to start a new thread---and you may want to highlight this link on your website.
Seth Rogan (the actor---probably more recognizable to people in their 20-40s) testified before a congressional committee yesterday and his opening statement is absolutely amazing. You can find it at http://hellogiggles.com/hear-seth-rogans-opening-statement-alzheimers-research-senate-hearing
I hope I copied that link right, but should be easy to find online by googling Seth Rogan and senate hearing.
I was just watching the news, and Seth Rogen was interviewed - he was appalled at the lack of interest of the senators concerning Alzheimer's Disease. He said that only two of the 17 senators on the panel bothered to show up to listen to his testimony.
Joan---this will be my third year attending the public policy forum, and I continue to be appalled at the lack of interest overall----many congressman have a standard line---"we don't support disease-specific legislation" or something like that. There is no understanding that this disease is not just a disease, it is a national economic disaster waiting to happen (obviously already an economic disaster for individual families). Very frustrating. Thanks for making this a separate thread!
As you probably know, I was a forum delegate for 3 years. I and another EOAD spouse did our best to hammer into their heads that AD is not just a disease of 80 year olds. I'll never forget the look on Newt Gingrich's face when our member, Tony, told him that his wife died of AD at age 43!. My point is that it takes shocking stories like Tony's to get their attention.
Our member, Coco, is going this year as a delegate from Hawaii. I gave her the advice to bring a personal story to them. It does get their attention better than facts and figures.
Seth Rogen was talking about his mother-in-law, trying to explain how the disease destroyed her ability to talk, eat, or go to the bathroom by herself. The 2 senators who showed up at the hearing weren't even pretending to listen. According to Seth, one was falling asleep.
I watched the whole 2 hours online. The first hour had more there. For some reason after the first hour all left except the two. They asked the panel from NIH a lot of good questions. There were a whole lot of young adults in the background and I am thinking they were the Senators aides taking notes to take back to their boss.
I agree - it was horrible that they could not show up. What the two Senators did say it is important to have consistent funding, not some now and then. The former senator who was diagnosed in 2011 should be putting more pressure on his former colleagues.
I have only the best things to say about Senator Harkin, whom I was fortunate to briefly meet twice. He is a true champion of humanity. He is set to retire at the end of 2015 and I hope he will be on the major ticket in the next general election.
For some reason this topic made me think of a tv commercial that was airing when I first jointed this forum, about 2 1/2 years ago. I went to YouTube in an attempt to find it because I can't remember if it was for Aricept, which I think it was, or for another med. It featured a woman and her mother and seemed to focus on the major issues being which pearl necklace to choose and some gentle chiding about the mother's choice of slippers vs shoes.
I couldn't find it, so maybe I am incorrect about all the above. But what I did find were several selections that were far worse than trivializing AD. One was a commercial parody set to a song "Granny from Pasadena" which seemed cruel to me. I didn't look for similar information about other medical conditions so don't know, and probably don't want to know if they are out there. I can't recall anything similar about cancer or ALS as a basis for either a commercial or a parody.
I hope Coco gets a better reception. She certainly merits it.
abby* I remember that commercial. You are right about the sweet way the daughter was helping the mom with the shoes and necklace. Not the years later and keeping mom from burning down the house or such.
People still think it is a "I forgot, who are you" type of illness that hits 70 to 80 year olds. Not what it really is like, with what happened to my DH. dx at 58 and gone by 62, leaving behind a 17 year old daughter.
I really appreciated Seth Rogen. And oh how I hope, it the Washington trip comes to be, that I can make a difference. My social worker advised me to make two strong speeches, one for 5 minutes, and one for 30 seconds. I remember at the Honolulu lobbying last year that after about 2 times of saying my piece to a couple of senators, that the next 10 or so politicians we went to it just rolled off my tongue, it was the truth and easy to say.
Coco--maybe you've already thought of this--I would take a picture of your hubby, looking healthy, at about the time he was diagnosed. I know you will emphasize his "young" age at dx--but a picture makes so much impact. I will never forget the expression on Sen. Elijah Cummings' face when I told him Steve was 60 at dx (the Senator was about 63 himself, at the time). I'm sure you've been told that generally, you'll be speaking to a 20 or 30-something aide on the Congressional staff. I asked them if any of their parents were in their late fifties, around the age when Steve started showing signs--in other words, tried to make a comparison to real life.
Seth Rogan's advocacy educates a whole new generation about AD. My 20-something nephew emailed me the YouTube link for the Rogan testimony. He said he became aware of it because it was trending on Facebook and was featured on the site Reddit. His 24-year-old sister also had seen it. Of course, they both are sensitive to the impact of AD because of Steve, but this is a great use of social media to get to the young people.
MAHALO MarilynMD for the advice. And how are you sweet friend, how is your heart? Thinking of you often.
This is a good thing that Seth Rogen has done, to bring a young crowd to Alzheimers. Very good!
Yes I have a great photo of Dado when he was almost 60, right before he got ill. And I have one now, sitting in his wheelchair with his head hanging and a very vacant stare, a little blanket on his lap and he looks like a very old man, and a very young child at the same time.
This week I will contact the group to see if it is really on...the last I heard they were going to get me a room first. I know Joan said don't worry about clothes...smile...but a friend who is short and cozy round like me said she has some awesome things for me to wear. Being a tomboy I prefer suit jackets and slacks type of things. I may treat myself to a curvy stylish fitted Mu'u Mu'u, something with purple in it, for the dinner thingie. Also a friend will make me a long lasting Ti leaf lei to take with me, that I can insert flowers when I get there. Hope it happens now.
Coco--thanks for asking about my heart! It is healing, but slowly. The ghastly weather we have had/are having since Steve died has meant more time at home alone--not really a good thing for me right now. But this too shall pass and I know I will feel better when I can visit Steve at the cemetery. In my religion, we aren't supposed to go for a year after the LO is buried. But obviously, I think of him daily and talk to him sometimes.
I think you should take both photos--the contrast will speak volumes. Make sure you check the weather--you are going in April--right? I have a feeling our spring will even be colder than usual this year and certainly for you, since you're not used to it.
The Seth Rogen opening remarks went past 4.5 million views yesterday and it's right at the top of my Utube face page and it's gone past 5 million views today. It's getting exposure.
Seth Rogen's fundraising efforts include a framework for getting college kids involved. My son has joined his group, Hilarity for Charity U, and is sponsoring a scavenger hunt. If you want to get a warm & fuzzy feeling about the current generation, check it out. I am NOT soliciting donations - just wanted to let you know that Seth Rogen is having an impact on this important demographic. I am so happy my son is taking this initiative - it's a great learning experience for him, too! http://www.crowdrise.com/mattknoche-HFCU/fundraiser/mattknoche
I hope many, many more college students get involved!