A friend of mine sent me a link about Alzheimer's recently, and I was surprised--shocked--horrified--to read that new drugs and other treatments can't find enough volunteers. I can't believe that. We would have signed a deal with the devil himself if he had agreed to give my dad a drug that would have given him a chance at a longer, healthier life.
I don't know how most of these trials work, but I know that the one my dad was part of did NOT make him STOP taking his medicine, it only added new medicine. And when we found out at the end that he was on the placebo, he received the real drug then.
The Alzheimer's Association now has a web page that helps match volunteers with clinical trials. I'm lucky enough to live near New Haven and to have had access to Yale University for my dad's studies, but if you don't live around here that doesn't mean you shouldn't try. There are even trials to sign up for healthy people who don't have AD--I added myself to their data bank.
Being in a clinical trial is about paying it forward. I knew that the drug would probably not help my dad. But down the line, it might have saved someone else from my family's pain.
I am still accepting donations for my Walk to End Alzheimer's team--the walk is October 2, 2011. If you are not already doing the walk and haven't donated to anyone, I'd appreciate anything. This is my first year having a team and I'd love to show up with a lot of money to prove you don't have to be a corporation to raise funds. Click the to the left (or in my sidebar) to donate."Had a Dad" Alzheimer's Blog http://alzheimersdad.blogspot.com(c) Gevera Bert Piedmont })i({Thank you for visiting! read more..
Friday 27 April 2012
Alzheimer's Association-Clinical Trial
Hearing Aids-Alzheimer
What do you think?By Barbara Pursley ...
The Alzheimer's Reading Room is the number one source of life news for the entire Alzheimer's community. Our goal is to Educate, sometimes Entertain, and Empower Alzheimers caregivers and their families worldwide. read more..
Translating Alzheimer's for Others
“Does Audrey have her hearing aids in?”By...
The Alzheimer's Reading Room is the number one source of life news for the entire Alzheimer's community. Our goal is to Educate, sometimes Entertain, and Empower Alzheimers caregivers and their families worldwide. read more..
Public Service Announcement-Alzheimer’S Association-Awareness Campaigns
A recent public service announcement broadcast in Belgium has added fuel to the controversy over how “clever” it’s appropriate to be when it comes to Alzheimer’s awareness campaigns. The Flemish League Alzheimer’s Association recently commissioned a PSA message that has brought strong responses from viewers. read more..
Moving to a New Web Address
I’ve packed my bags, forwarded my mail, and recently moved to a new address on the web. Although this starter home has been great, I was in need of a website upgrade in anticipation of things to come. I’d like … Continue reading ? read more..
Monday 23 April 2012
The Latest Headlines-Alzheimer
Every week we like to scour the news world for the latest Headlines in Alzheimer’s care, treatment and prevention. Here are some major headlines for the week of April 9th... read more..
Sole Caregiver
You already know what may be gained by giving up employment and becoming the sole caregiver for your parents. You are the hands-on person and know their care intimately. You know how they are doing day and night and you hope they will appreciate your help. They raised you and you want to give back. read more..
Tangled Memories-Elderly Mother-Experience
If you've ever talked with someone who has shared an experience with you, but remembers the details very differently than you do, your circumstances are not unusual. Individuals tend to view each experience through a unique lens, because we are shaped by our past experiences, and perhaps our genes. read more..
Daughter wants to improve quality of life for elderly mother who has become blind
Dear Carol: My 76-year-old mother has lost her vision, and is easily bored. She used to knit and read, but now she's only able to listen to TV. Her thinking and reasoning abilities have decreased dramatically since losing her sight. I often read to her which she enjoys. How else can I help stimulate her interest in life? - Karen read more..
Retirement-Alzheimer
I've been writing this blog for a LONG time, and I know I often talk about things that might make people feel uncomfortable--that's the road I've chosen to travel. I have other blogs, on other subjects, and I often get negative comments on those. But on this blog, NEVER have I had anyone say anything bad...until now.
(I'm not talking about spam--I'm talking about rude.)
I recently did a post about what Alzheimer's cost my family in terms of Social Security income.
This is what someone commented:
"Some people don't think about their retirement thoroughly. And they take important steps before thinking about it twice or asking an expert."
WHAT?! My dad retired because he had ALZHEIMER'S. Did you miss that, jerk? And my mom retired to be a CARETAKER for my dad, who had ALZHEIMER'S.
There is nothing to "think about thoroughly" when you are sick with a fatal illness, or your spouse is.
And if you are implying they should have had investments, I didn't even get into that in the other post. But I will now. My mom had a nice 401(k) and some other savings. But there is a thing called a SPEND DOWN where the government makes you spend ALL your money before you or your spouse can go on Medicare. So the retirement she did plan for instead went to $10k a MONTH on a nursing home until she ran out of money. How do you plan for that, huh? You got an extra $120K a year just lying around waiting to be spent on nursing care? Good for you, I hope you live a LONG TIME and suck up all that money and someone comes along and tells you that you should have planned better and died quicker.
"Had a Dad" Alzheimer's Blog http://alzheimersdad.blogspot.com(c) Gevera Bert Piedmont })i({Thank you for visiting! read more..
Thursday 12 April 2012
Actor Matthew Mcconaughey-Alzheimer's Disease-Lance Armstrong-Darrell Royal
Legendary Texas Football Coach Darrell Royal and wife Edith positions DKR Fund as a ‘Texas game-changer’ in Alzheimer's disease care and research. Celebrities and business leaders lend their voice and support to cause.
Alzheimer's Reading Room
Left to Right: Lance Armstrong, Mrs. Edith Royal,
Coach Darrell Royal, Matthew McConaughey
(Photo: Business Wire)Edith Royal described how difficult it is to care for someone in the advanced stages of Alzheimer's disease. Royal said that while Texas ranks third in the nation for the disease, most of the research takes place on the east and west coasts.
Edith Royal, Darrell Royal's wife, described the fund to a Texas legislative committee hearing Tuesday.
Royal, who suffers from Alzheimer's, also appeared at the hearing along with seven-time Tour de France winner Lance Armstrong and actor Matthew McConaughey.
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The Darrell K Royal Fund for Alzheimer’s Research was launched today at an Interim Joint Committee hearing on Alzheimer's Disease (AD) in the Texas Senate Chamber.
The DKR Fund is named after legendary Texas football coach Darrell Royal and was created to facilitate research and care for Texans to attempt to cure AD in our lifetimes. The announcement was made as part of testimony given by Royal’s wife, Edith Royal. Joining her on the Senate floor was Coach Royal and their long-time friends and supporters, actor Matthew McConaughey and 7-time Tour de France winner Lance Armstrong.
“Texas ranks third in the nation for number of citizens diagnosed with Alzheimer’s. The sad fact is that most everyone in our state is touched by this disease and the Darrell Royal family is no exception,” says Edith Royal. “The DKR Fund represents a commitment to excellence in Alzheimer’s research and care for Texans, the nation and the world. I am grateful for the opportunity to create this legacy for my husband, and for the incredible group of prominent Texans who want to join us in this endeavor.”
As part of her testimony, Mrs. Royal emphasized need for a vehicle that funds collaborative research in Texas, and promotes sharing of discoveries and treatment strategies nationwide.
According to the National Alzheimer's Association, Texas ranks third in the nation for number of citizens diagnosed with Alzheimer’s. There are currently 340,000 Texans living with the disease and by 2025, that number is expected to increase more than 38 percent. Despite the high number of Texans affected by AD, the vast majority of funding for research is directed toward the east and west coasts.* The DKR Fund will enable Texas to be the “game-changer” in advancing the global fight against AD and related dementias.
Mrs. Royal also brought to the Committee’s attention the harsh physical, mental, and financial challenges that come with being a caregiver to someone with AD.
“We are fortunate to have a team standing with us as we take this journey, but so many families and caregivers do not,” said Mrs. Royal. “Every day caregivers are burning out, stressing out; suffering very serious physical side effects of this challenge and do not know where to turn. It is painful to think of these people – both the person with the disease and the caregiver – experiencing the fear of the future, loss of hope, and the feeling of complete and total abandonment at this stage of their lives. It is for those people that I speak today.”The DKR Fund’s Board of Advisors consists of leaders in business, entertainment, sports and government, all of whom have affection for Darrell Royal and a desire to make a difference in the fight against Alzheimer’s Disease.
The DKR Fund Board of Advisors are as follows: Greg Abbott, Beau Armstrong, Lance Armstrong, Mack Brown, Ben Crenshaw, Lisa Dawson, Eloise DeJoria, Frank Denius, Melissa Edwards, Larry Gatlin, Angie Harmon, Rita Hortestine, Alfred Jackson, Joe Jama read more..
Thursday 5 April 2012
Health News
Title: New Drug Might Reduce an Alzheimer's Marker: Study
Category: Health News
Created: 4/2/2012 6:06:00 PM
Last Editorial Review: 4/3/2012 12:00:00 AM read more..
Family Mediator-Sexual Impulses-The Rocky Road-Family Issues-Dementia
Even siblings who grew up together with fondness for each other often have different ideas about what the right care for aging parents incorporates. When siblings have clashing personalities, or family issues have driven them apart, finding middle ground on anything can be extra challenging. read more..
Sexual Impulses and Needs in Alzheimer's and Dementia Patients
Recently, I received a question from a reader whose mother, in her late 70s, is in love with a man who just turned 80. The reader wondered what I thought about this situation, because she frankly, as she put it, found it "creepy." read more..
Jane's Addiction-Father's Day-Mother's Day-Alzheimer's
Once upon a time, I had a dad. Just like the title of this blog. And yes, when I started the blog, my dad was still physically with me. But the second someone is diagnosed with dementia, it's as if they start very slowly moving down a tunnel away from you. I knew nothing about Alzheimer's at that point, but I knew enough to steal the lyrics from a Jane's Addiction song to title my blog. "I turned around and found my daddy gone. He was the one who made me what I am today. It's up to me now, my daddy has gone away." (video is NSFW in lyrics or images)
Father's Day has ceased to be a holiday for me. I think it stopped in 2004, the last time we really CELEBRATED. Because the very next day, my dad got diagnosed and this blog came into existence. So to me, Father's Day isn't about a happy time with my dad. It's more like the LAST time with my dad, if it makes any sense.
We are a fatherless and grandfatherless family. My dad died in 2007. My husband's dad died in 1972 when he was just a wee pup. (He never had a dad--I shouldn't whine, because I had one for 39 years.) My mom's dad, my beloved grandpa, died in 1987 and his dad died in 1979. My grandma's still alive, but her dad died before I was born. My dad's dad died before I was born. One of my husband's grandpas died when he was a teenager; the other was never in the picture (there was a step-granddad there, but he died in the 1990s). So, in any direction you look from me, no dads. Only my sister-in-law's fiance has a dad (but her brother's fiance lost hers when she was a teenager). I guess we all have to adopt Rudy's father!
So basically Father's Day is a non-holiday. We don't discuss it. We don't celebrate it. It's as if it's a holiday from another faith--like Ramadan or Chanukah, we know it's happening for other people, but not for us. I'm having a little gathering this weekend and I was astonished that some people can't come because of Father's Day. It's that far off my radar.
I'm sure other people choose to use Father's Day (and Mother's Day) as a day to memorialize their loved ones with dementia, past and present. But for my family, we lived it, and we like to just let it lie most of the time. If the subject comes up naturally, we talk about my father, but we never force it.
Love and memory should never be forced.
Happy Father's Day to all those who celebrate, and a nod to those, like me, who have chosen to leave it behind."Had a Dad" Alzheimer's Blog http://alzheimersdad.blogspot.com(c) Gevera Bert Piedmont })i({Thank you for visiting! read more..
Wednesday 4 April 2012
Those People
As the two women gathered their belongings to leave that day, they hugged their old friend good bye, promising to come and visit soon and often...By Tom and Karen BrennerAlzheimer's Reading RoomWe were working in a memory support center one day when we noticed...
The Alzheimer's Reading Room is the number one source of life news for the entire Alzheimer's community read more..
Brains
Title: Smog May Harm Women's Brains: StudyCategory: Health NewsCreated: 2/13/2012 6:06:00 PMLast Editorial Review: 2/14/2012 read more..
Sunday 1 April 2012
Cognitive Functioning-Cognitive Decline
The journal Age and Ageing recently published a study that discusses the relationship between being overweight and cognitive decline. There were 250 people involved in this study, and researchers measured ...Read Full Post read more..
Technological Innovation-Genetic Risk Factors-Group Discussion-Dark Chocolate-Antioxidants
The stuff touted to confer anti-aging properties on foods from blueberries to dark chocolate does no good for people with Alzheimer’s disease—and might even make them worse... read more..
Keystone: Symposium Emphasizes Key Aspects of ApoE Biology
Why has it been such a challenge to pinpoint the exact role in pathology of apolipoprotein E, which surpasses all other genetic risk factors for late onset Alzheimer’s disease?... read more..
Communicating effectively with patients and family