Dear Alzheimer's Association Leadership

A good letter to the National Alzheimer's Association Leadership. Many of us share these concerns.

Dear Alzheimer's Association Leadership

Caregiver crime growing trend | ajc.com

Caregiver crime growing trend | ajc.com

"I wasn’t a tenant anymore,” Hill testified recently. “I’d become a hostage.”Hill, 59, said he was trapped in a windowless basement room in a DeKalb County home for almost six months ending in March 2010, sharing the room with a mentally disabled stranger. For breakfast, they got Ramen noodles in Country Crock margarine containers; for dinner, two bologna sandwiches. They used 5-gallon paint buckets for toilets."

Glen Campbell: I Have Alzheimer's

Keep Glen Campbell and his family in your prayers. I felt sad when I heard the news today. I loved his music and always thought he was a nice person.

I wish him well on his farewell tour and hope he comes to South Florida so I can see him perform.

Today,after putting it off I went to the Human Resources Department at work and requested the papers for Medical Disability. Retiring makes me nervous,

but I can't keep on working. Everything is so overwhelming and I can't keep track of things like I used to.

Country Singer Glen Campbell: I Have Alzheimer's

Infusion Treatment #1

After being in the Wyeth clinical trial of Bapineuzumab, today was my first day in the final part of the trial. I'm getting the real vaccine and even checked to make sure the IV bag had

Bapineuzumab written on it. It made for a long day-six and a half hours. But I had my laptop and Larry had his and we had a TV in the treatment room so it wasn't so bad. I always have

brain scans halfway between the infusions to make sure my brain is not swelling which used

to be a problem with Bapineuzumab but is not anymore after decreasing the amount of the

chemical.

I wish everybody would get into a clinical trial. Without people enrolling in the trials, research and finding a cure slows down.

Difficulties in Diagnosing Dementia by Type

"It is true that we know of around 70 different types of dementia, but these findings are shocking. We believed more patients were diagnosed correctly when we began the study".

Difficulties in Diagnosing Dementia by Type

Retire Now or Wait?

For the past week I've been torn between going out on a medical retirement and waiting until the

end of December when I can go out on a full retirement. I'm extremely anxious at work and having increased problems with being organized at work and forgetting things. What to do? I will

discuss it with one of the social workers at the Alzheimer's Association.

A Possible Vaccine for Alzheimer’s (Bapineuzumab)

This is the study I have been in for the past 18 months. In 4 weeks I will begin being being infused with the actual bapineuzumap vaccine.

It was reported a few dags ago, in both the U.K.’s Telegraph asnd in India’Indian Express, that there could possibly be a vaccine for Alzheimer’s within the next two years. This vaccine is being shown effective in stopping the progress of Alzheimer’s and even in reversing brain damage.

A Possible Vaccine for Alzheimer’s (Bapineuzumab)

A touching story from Coastal Visions Magazine: NEW PURPOSE

Recently, Coastal Visions Magazine suffered the loss of our photographer and photo editor Cynthia Fitzgerald, my wife of 35 years. March 22, 2011 she passed away from complications associated with Alzheimer's disease. She was 56. When she was diagnosed with AD in 2007, I made the difficult decision to care for her through the most difficult time of her life.

Read More: http://www.coastalvisionsmagazine.com/featured.htm

'Penny Wise, Pound Foolish'

'Penny Wise, Pound Foolish'

"Out of each dollar appropriated to the National Institute of Health (NIH), only 3.6 cents goes toward supporting the work of the National Institute on Aging (NIA), one of the 27 institutes and centers of the NIH and the lead institute on Alzheimer's disease research..."

Thanks to Bob over at Alzheimer's Reading Room for keeping us all informed so we can help spread the word about Alzheimer's Disease and the multitude of it's impact on our country.

Freshman GOP Rep Loudly Booed As She Laughably Compares Ryan's Medicare Plan to Coverage Congressional Members Receive | Crooks and Liars

Freshman GOP Rep Loudly Booed As She Laughably Compares Ryan's Medicare Plan to Coverage Congressional Members Receive | Crooks and Liars

Alzheimer's patients, their family members and caregivers need to find out where their elected officials stand on gutting or cutting Medicare and Social Security. Medicare and Social Security are not entitlements. We pay for them over the course of many years and thousands of dollars in payroll deductions. Only support elected officials who take a stand to not mess with our Medicare and Social Security.

Test For Alzheimer's Helps Diagnose Earlier

Test could detect Alzheimer's disease earlier than previously possible

(Medical Xpress) -- A new study has revealed the possibility of using a simple test for the early detection of Alzheimer’s disease, enabling the condition to be identified before significant and irreversible decline takes place.

Will Newt’s Hopeful Message on Alzheimer’s Get Overshadowed? - By James P. Pinkerton - The Corner - National Review Online

Will Newt’s Hopeful Message on Alzheimer’s Get Overshadowed? - By James P. Pinkerton - The Corner - National Review Online

Excellent article!

THe Friend's Club

Bob over at Alzheimer's Reading Room posted a link to the Friend's Club. It's a group of men who

gather 4 days a week to learn, share, socialize and have important intellectual stimulation. I got all excited when I first went to the website, then learned that it's in Bethesda, MD. Anyway it's a neat site and a wonderful resource for men with early and moderate stage Alzheimer's disease.

http://www.friendsclubbethesda.org/

Alzheimer's Update

On the first of May, my neurologist discontinued the Aricept and started me on the newest drug: the Exelon Patch.  Unlike the Aricept, I don't have side effects and can take the maximum dosage whereas with the Aricept I could only take the lowest dose due to the awful side effects.

I'm being considered for a research trial and will know more when I see my doctor and research team in August.

I had quite a scare this morning.  I woke up feeling dizzy, nauseated and terribly weak.  I went back to bed, slept a couple of hours and got back up and was no better. Larry wanted to take me to the ER and I refused.  After several more hours I gradually feelt better and was wondering what had caused it.

Then it hit me.  We went to Integrity's pot luck dinner last night and I had a glass of wonderful Sangria which my pal Bruce from St. Mark's had made.  I forgot about the patch!  I will never have a glass of wine again when on any medication that effects the brain. Dumb!

ALZHEIMER'S SENATE BILLS & MY OWN BATTLE WITH THE DISEASE

Last night I was watching the Senate Committee on Aging, /Alzheimer's Sub Group hearings on C-Span. I learned that the number of Alzheimer's cases has doubled since 1990 and continues to rise.

Elsewhere on my blog I posted about some of the research going on here in Florida. Supporting this research is important. What I like about Senate Bills 897 and 898 is that is the result of research from real life situations and real life research accomplishments. The financial and emotional tolls on families are devastating. Long term care assistance is provided for in this legislation as well as an increase in the funding for research. There are several promising drugs getting closer to market.

Please consider writing to your senators asking that they support Senate Bills 897 and 898.

As far as my own disease process goes, I have periods of zipping along through life just fine, not forgetting words or task needing to be done and other times when I feel perplexed. In Washington, DC last week, I did well until my very last day.

I spent my last day in DC at Washington National Cathedral because I wanted to see the interment site of Helen Keller and Ann Sullivan and to do some shopping in the bookstore.

I had a wonderful afternoon sometimes sitting in one of the chapels, chatting with a tour guide and sitting on a bench and drinking coffee in one of the gardens. To me, there are two Taj Mahals of Anglicanism: Canterbury Cathedral and our National Cathedral. Both always leave me in awe. The deep spirituality of both cathedrals is something I feel when I 'm in those places.

Anyway, it was time to get back to my hotel to claim my luggage and get to the airport. So I headed down Massachusetts Ave and caught a cab to Starbucks near my hotel for a cappuccino. Starbucks is two blocks from my hotel. Never the less, I managed to get totally lost which had not happened before during my stay. I walked and walked and nothing was familiar.

I ended up at DuPont Circle, saw Starbucks and walked in to see if the familiar face of the person who served my coffee would indeed assure me that I was in the Starbucks I had been to earlier. I was lucky. The lady who served me was behind the counter and she pointed to the street along the side of Starbucks. All I had to do was walk the way she pointed down that street.

I thought about this experience while watching Senator Mikulski talking about her dad's Alzheimer's and my own parent's who both had Alzheimer's getting lost on a drive in South Florida.

The whole thing is scary, but I remain positive that a cure or way of managing the disease will come in the not too distant future. And I also hope that my disease takes a similar course of my dad's. He kept his humor, still drove, still enjoyed his ministry of visiting folks in a local nursing home and enjoyed life to the fullest. He passed away in peace from a heart attack with his family with him. My dad had class and dignity to the end. For that I am grateful and only hope I can be so lucky.

Please visit the Alzheimer's Association Website

http://www.alz.org

Senator Mikulski Introduces Comprehensive Alzheimer's Breakthrough Legislation

Senator Mikulski continued her fight for Alzheimer’s patients and caregivers by introducing two critical bills this month – The Alzheimer’s Breakthrough Act of 2007 (S. 898) and The Family Assistance Act of 2007 (S. 897).

The Alzheimer’s Breakthrough Act of 2007 doubles funding for Alzheimer’s research at the National Institutes of Health (NIH), giving researchers the resources they need to make breakthroughs that are on the horizon in diagnosis, prevention and intervention.

The Family Assistance Act of 2007 creates a $3,000 tax credit for families caring for a loved one with a chronic condition like Alzheimer’s to help them pay for prescription drugs, home health care and special day care. "I’m on the side of people with Alzheimer’s and the families who love and care for them.

Research that is going on right now is the master key that will one day open doors to finding a cure for Alzheimer’s," said Senator Mikulski. "Ninety-five percent of what we know about Alzheimer’s disease, we’ve learned in the past 15 years. We must stay the course and continue the investment. We need to do more and we need to do better."

As Chairman of the Retirement Security and Aging Subcommittee of the Health, Education, Labor and Pensions Committee, this month Senator Mikulski also convened the subcommittee's first hearing of the 110th Congress, and examined the need for a continued investment of federal resources in Alzheimer’s research and programs.

For more information, go to: http://mikulski.senate.gov/record.cfm?id=270936.