Together We Can Make a Difference

September is World Alzheimer’s Month. Over thirty five million people and their families are affected by Alzheimer’s worldwide and more than five million of those are here in the United States. Though there is research taking place throughout the world, a cure is not yet in site. President Obama recently increased the funding for research but it’s not enough. I firmly believe that we must all get involved on some level. We can certainly do more collectively than any of us can alone. We can give money to the Alzheimer’s Association or other groups focusing on the disease if we are able to afford to do so in these tough financial times. But there’s much more to do than to give money. Below are a few suggestions.

• Wear purple on September 21st – Alzheimer’s Action Day
• Talk to friends and family about the disease. Education is power!
• Write to your legislators about the need to increase funding for Alzheimer’s research, expand programming for those with Alzheimer’s and expand services for those caring for this population.
• Do what you can personally do to keep Alzheimer’s from affecting you – eat nutritiously, exercise, reduce stress in your life, keep socializing and stay mentally active in a variety of ways.
• If you have friends or family with Alzheimer’s, maintain those friendships. You are needed now more than ever!
• Volunteer for programs in your community that raise awareness about the disease – research programs, caregiver programs or programs that assist those with Alzheimer’s.
• Help to reduce the stigma of Alzheimer’s. Talk openly about it. Learn more about it. If you have the disease, seek out friends and foster a positive way of communicating. Be open and direct. Stay connected to those friendships. Connect with others who are affected by Alzheimer’s.
• Advocate far and wide, wherever you can.
• Join a Walk to End Alzheimer’s. Check with your local Alzheimer’s Association or http://www.alz.org to find out more.

Do whatever you can do. Together we can make a difference

A New Clinical Trial with Exciting Possibilities

In the past, drugs for those with memory issues have been given only after the person actually has symptoms. Now though, for the first time, the National Institutes on Health announced that in a trial study, a drug, Crenezumab, will be given that is intended to stop Alzheimer’s disease. The focus will be on testing those who are genetically predestined but are, at the time of the study, cognitively normal though at very high risk for Alzheimer’s disease. Most of the participants will come from the world’s largest family to experience Alzheimer’s, an extended clan of 5,000 people who live in Medellin, Colombia and surrounding villages. Family members with a specific genetic mutation begin showing cognitive impairment around the age of 45 and full dementia a few years later. They are quickly affected, losing their ability to move, eat, speak and communicate. Three hundred family members will participate initially, some as young as 30 though they will still be years away from symptoms.

The $100 million, five year study could yield infomation that could also apply to millions of people worldwide who will develop the more conventional Alzheimer’s. Over 5.4 million people in the U.S. have this dreaded disease with numbers quickly growing.

The drug trial is part of the federal government’s first national plan to address Alzheimer’s. President Obama recently assigned $50 million from the current year’s National Institutes on Health budget to research considered too promosing to wait, including the Colombia trial and a study on whether inhaled insulin can ease mild cognitive impairment. Another $100 million is proposed for 2013, mostly for research but also for education, caregiver support and data collection.

Though the success of the Columbia trail is no sure thing, it is very exciting in that it is looking at reaching people before symptoms appear, before the brain is ravaged by the disease. This certainly seems to be the direction that research is going. Let’s all keep our fingers crossed!

“Still Alice” by Lisa Genova

As I sat at the table waiting for the Thanksgiving turkey to get done I started reading “Still Alice”. I could not put that book down until it was finished. It has to be one of the most heartbreaking and saddest stories I’ve ever read and I haven’t stopped thinking about it. It is about 50-year-old Alice Howland, a brilliant Harvard professor who is a wife and mother of three who was diagnosed with Early Onset Alzheimer’s.

The book is told from the eyes of Alice who is living with Alzheimer’s rather than so many books I’ve read that tell the story from what the caregiver or family member sees happening to the person with the disease. It was so real you could feel her confusion, fear and anger as well as her panic when she gets lost in her own neighborhood. You can’t help but feel how devastating this would be if it happened to you or someone you loved.

Many of us wonder if we are getting Alzheimer’s when we lose our keys, or forget where we parked the car and even when we can’t come up with someone’s name who’ve we’ve known all our life. We might say it’s because we’re stressed or we’ve been working too hard and for a while Alice feels the same way. She doesn’t tell her husband right away and she thinks no one notices it yet. When she gets lost in her own neighborhood she decides it’s time to go to the doctor to see what’s going on. It’s then she gets the horrible diagnosis of Early Onset Alzheimer’s.

Alice goes through genetic testing and learns that she has a mutated gene which means her children could get the disease. Her older daughter is trying to get pregnant so Alice knows she has to tell her family about the diagnosis and give them the option to be tested. This brings up so many questions about whether or not I’d go through with genetic testing. Two of Alices’s children were tested and one refused. What would I do in their situation?

In the book, Alice tries so hard to compensate for her memory loss. She keeps meticulous notes in her Blackberry, although sometimes she can’t remember what the notes meant. She once attended a lecture at the University and waited with the students for the Professor to come to class. Eventually Alice left with the students when the Professor didn’t show up and it was much later when someone told her she was supposed to be teaching the lecture not attending it. How sad for her!

As the disease progresses so quickly I could not control the tears as I put myself in her position. She loses so much and it’s hard to read how her husband reacted to her. The book didn’t leave you feeling as if there is nothing that can be done, though…you are left knowing there is much research being done to find a cure. You are left with a new compassion for both the person who receives a diagnosis of Alzheimer’s and especially for what the family will go through. You are left knowing it’s important to continue doing something to create new pathways in your brain by exercising your brain and taking care of it.

“Still Alice” is definitely one of the best books I’ve read in a long time. It would be the book I’d buy for all my friends and family to read if I were to be diagnosed with Alzheimer’s. But don’t start reading “Still Alice” until you can dedicate the time to sit and read because you won’t get much done until it’s finished!