We’re Being Heard!
Written by: Jim Wessler | August 9, 2010 | Filed Under Alz Things
I take my hat off to our Massachusetts government officials: They are listening. For the first time in many many years, both branches of the state legislature have passed, unanimously, a bill specifically benefiting families living with Alzheimer’s. The Silver Alert legislation, which will ensure a coordinated state response when a cognitively impaired adult goes missing, will be signed into law by Governor Patrick.
And speaking of the Governor, we are very pleased that he has initiated a process to create a Massachusetts State Alzheimer’s Plan in collaboration with the Alzheimer’s Association. September will feature a series of public listening sessions around the state. In addition, we are working closely with Secretary of Elder Affairs Ann Hartstein and her staff to launch an effort where ASAP/Home Care staff will screen all of the state’s approximately 70,000 Homecare clients for cognitive health. A positive protocol has been developed that includes referrals to a client’s primary care physician.
We are beginning conversations to see how we can implement an Alzheimer’s State Plan in New Hampshire. None of these positive developments would be possible without the persistence of our volunteer advocates. Because of your calls, e-mails and speaking out at public meetings, our elected officials are listening. You are being heard!
And Massachusetts First Lady Diane Patrick has agreed to be Honorary Chair of Greater Boston Memory Walk to be held September 26th. So whether it is on September 26 or at any of our 13 New Hampshire and Massachusetts Memory Walks, please join us. Walk with us to send a message that Alzheimer’s is a critical cause for our nation. Walk with us so that our voices stay loud. Let’s put an end to Alzheimer’s.
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“That’s a lot of miles”
Written by: Jim Wessler | June 18, 2010 | Filed Under Alz Things
Well I am in the midst of training for Memory Ride; in fact I have one month left. Up early most mornings for about an hour ride and much longer ones on the weekends. My son and I are training for the century ride. He’s cycling in the canyons of Manhattan while I have the benefit of the hills of the western suburbs. We ride in memory of my dad.
My dad, Stanford Wessler, died over 5 years ago and while the cause of death was a severe heart attack, he had also been diagnosed with Alzheimer’s several years earlier. Even in his last year of life, dad would gather his medical journals and attempt to read them, maintaining his old routines of keeping current in his field. He was a physician who specialized in thrombosis – the treatment of blood clots. He was the kind of doctor who was not driven by the clock. Instead, he would take an hour with his patients, having a conversation and taking a full history to determine the best course of treatment. If he were in private practice today, he would probably be filing for bankruptcy!
He knew of his diagnosis and he was an admirer of the work of the Alzheimer’s Association (granted he was a bit biased). Since Josh and I have been riding for 7 years, he knew that we participated in Memory Ride. His primary comment about our long ride was short and to the point: “that’s a lot of miles”.
He was right then and his comments are accurate today. In fact on July 24th, Josh and I will be joining with up to 250 cyclists who will have pedaled a lot of miles – all with the hope that we will soon be able to see effective treatments for Alzheimer’s.
Would you consider joining us? You’re never too old to get on a bike.
PermalinkA Caution About Genetic Test Kits
Written by: Jerry Flaherty | May 17, 2010 | Filed Under Research
Many of us who have had a close family member with Alzheimer’s would like to see into our futures. But we also know that there is no single, definitive test for late onset Alzheimer’s disease—the type of disease affecting at least 90% of people with Alzheimer’s.
Nevertheless, late onset Alzheimer’s was listed among conditions for which a San Diego company recently announced it would sell a personal genetic testing kit at Walgreens stores. Walgreens is now holding off on that plan because the kit had not been approved by the U.S. Food and Drug Administration, raising questions about its legality.
A dozen or more genes are associated with late onset Alzheimer’s. They’re called “risk factor” genes. Among them, the APOE-e4 gene is thought to most elevate risk. But having the APOE-e4 gene (or other risk factor gene) does not mean you will develop the disease. What’s more, even if testing establishes that you don’t have a risk factor gene, you may still develop Alzheimer’s.
There is a second category of genes with a role in Alzheimer’s. Three have been identified. They’re called “deterministic” and are quite rare, accounting for less then 5% of cases. If you inherit a deterministic gene, you will develop what is known as “familial” Alzheimer’s. Genetic testing is available for many of the mutations connected to familial Alzheimer’s.
Any genetic test for Alzheimer’s disease could impact your eligibility for employment, health and long-term care insurance, and your future plans—all things that need to be discussed with your physician and a skilled genetic counselor. If you have no symptoms of Alzheimer’s disease, then genetic testing, except under rare circumstances and with professional guidance, is simply not a good idea.
What is a good idea? Ask your representatives in Congress to push to boost funding for Alzheimer research. Learn how participating in clinical trials can push the envelope for treatment and cure. And go to www.alz.org/MANH to help the Alzheimer’s Association push for an end to this disease.
PermalinkAlzheimer’s by Association
Written by: Paul Raia, PhD | May 10, 2010 | Filed Under Living with Alzheimer's, Research, Uncategorized
Is Alzheimer’s disease catchy? A recent study in the Journal of the American Geriatrics Society might make some think that. This study found that giving care to a spouse with Alzheimer’s disease increased the caregivers’ risk of eventually getting the disease themselves by six fold.
This finding certainly agrees with my observations over the past 20 plus years of working in this field. It makes sense medically as well. First, many studies have found that 50 percent of spouse caregivers are clinically depressed, and we know that depression is a risk factor for Alzheimer’s. Second, stress, fatigue, lack of time for exercise, poor eating habits, often consequences of care giving without appropriate respite and other supports in place, are factors related to cardiovascular disease and diabetes, also known risk factors for Alzheimer’s disease.
It is often said that Alzheimer’s disease affects entire families (emotionally), but now perhaps we should say, without help for the caregiver, like that found through the Alzheimer’s Association 24/7 Helpline, Alzheimer’s is a disease that infects the entire family.
PermalinkTeamwork and Birthdays
Written by: Jim Wessler | April 20, 2010 | Filed Under Alz Things
I was on the sidelines watching our 35 member Boston Marathon team run by, along with 30,000 other runners. What dedication and what a tribute that they all finished. My wife and I were fortunate to host the team for a pancake breakfast about 2 weeks ago. You may think that running is an individual sport, but these folks were so supportive of each other – they had created a wonderful team esprit de corps. The experiences of our runners confirm what we often say about Alzheimer’s: you can’t do this disease alone.
So what did I do after watching the Marathon? I got on my bike and rode about 25 miles as I begin training for this summer’s Memory Ride. Training can be a solitary endeavor, except I find myself bolstered by other riders and of course the cause.
Speaking of the cause, today is my Dad’s birthday – he would have been 93. As I begin my training in earnest, I am not only motivated by our vision of a world without Alzheimer’s, but I am propelled over these New England hills in memory of my father and with the promise that our work will lead to the day when we no longer have to grapple with the reality of our parents developing Alzheimer’s. Happy riding!
PermalinkThe Dash
Written by: Trish Reske | April 14, 2010 | Filed Under Alz Things
Trish is a member of the Run for the Memory Team and will run Boston Monday, April 19
It’s been said that “the dash” between the two dates that will be on our grave marker will represent the entirety of our life —how we made use of the time that we were given on this earth.
For the 35 Alzheimer’s Association Marathon team members, that dash happens to be filled with lots of other numbers: our official bib number; the number of times we’ve run for Alzheimer’s, the number ”26.2”, the number of training runs we’ve shared, the number of people who are supporting us, the number of funds we’ve raised as a team, the number of port-o-johns at the start.
The number of stories we’ve shared of loved ones with Alzheimer’s disease, as we added to our mileage each week and counted down to April 19, 2010.
Yes, we’re counting. We’re counting our calories; we’re counting down the days. We’re counting on good weather (ha!), we counting on loved ones to come out and cheer us on. We’re counting on each other as a team.
But most of all, we’re counting on the fact that one day, hopefully soon, a cure for Alzheimer’s will be found, due in part to our dash to the finish line at Boylston Street.
It’s the number one reason why we run.
PermalinkMy Reasons for PuzzlesToRemember
Written by: Max Wallack | April 13, 2010 | Filed Under Living with Alzheimer's
Max Wallack is a sophomore at Boston University Academy.
Everyone involved in Alzheimer’s care realizes that it’s not just the poor memory that makes Alzheimer’s difficult. Most families would be glad to “fill in” the memories and provide all the loving support needed to remember important things. What makes Alzheimer’s so difficult is the agitation that can accompany the disease. Perhaps the agitation is a result of the disease affecting the emotion centers in the brain. Perhaps, the agitation is a reaction to a realization of how difficult and strange things have become. Whatever the cause, the agitation is real.
I witnessed this agitation in my great-grandmother during the many years we cared for her at home, as she sank deeper into dementia. I also got to witness this agitation on a larger scale as I visited her in various nursing facilities during the last few months of her life. One day, I made an observation. I noticed some patients working on jigsaw puzzles. They appeared calmer, more alert, “more there.” I witnessed this scene on numerous occasions.
About a year after my great grandmother’s death, I decided to collect jigsaw puzzles and donate them to facilities that care for Alzheimer’s patients. I called my organization “PuzzlesToRemember. Over the past 22 months, I have collected about 3500 puzzles and distributed them to over 160 facilities spread out over all 50 states and 2 Canadian provinces. I receive frequent letters expressing gratitude and telling me how much their patients are benefitting from the puzzles. I have recently begun discussions with a puzzle manufacturer about the possibility of producing puzzles specifically for the needs of Alzheimer’s patients.
Recent research is showing that the portion of the brain that deals with creative pursuits, such as art, music, and puzzles, is one of the last portions of the brain that is affected by Alzheimer’s disease. Creative pursuits may be the best path to communication with these patients.
I now realize I was left an important legacy by my great grandmother: the desire to become a geriatric psychiatrist and spend my life helping Alzheimer’s patients.
PermalinkCaring for Caregivers
Written by: Helen Meyrowitz | March 18, 2010 | Filed Under Living with Alzheimer's
When the Alzheimer’s Association asked if I would create a pilot Expressive Art program for Alzheimer’s caregivers my immediate response was YES. Art therapy is not a part of my professional resume but being an experienced artist as well as an experienced caregiver of a loved one with Alzheimer’s gave me all the credentials I needed.
The Association offers ongoing art programs for Alzheimer’s patients as well as support groups for caregivers. It therefore came as a surprise to me that while it is acknowledged that art is a wonderful way of releasing stress, no such program existed for the caregivers. With that in mind the Association generously supplied the art materials I requested, a great space to work in and a wonderful partner, Kathi Coston. Kathi had the support group experience that I lacked.
We designed the program for 1 ½ hour sessions, 6 consecutive Wednesdays and with a maximum of 8 participants. We considered 6 sessions as an ideal number: 1-2 (get comfortable) 3-4 ( bond) 4-6 (cohesive group).
In each session we took a different approach but always the purpose was to find expression for what is within – whatever it is – anger, sadness, hope, despair, love, hate, peace, joy.
The idea was not to try to make a beautiful picture or even to get it to look like something specific. The most important thing in art for healing is to use it freely to express feelings and images buried within, to reach down and find that playful child that is still there in each of us. To that end I decided to use off beat art making materials. Along with a variety of poster paints, charcoal, pastels, crayolas, pencils, making tape, collage material we used corks, broken combs, sponges, tooth brushes, cut cardboard squares to spread paint and yes brushes. I encouraged the use of the less dominant hand, the use of both hands simultaneously and even closing eyes and letting the hand freely roam at will. We painted to music. In a darkened room we began with a slow meditative selection using pencil to glide across the paper in response to the feel of the restfulness suggested by the music. With lights back on we progressed to a variety of different tempos and different materials. We ended with fast pulsating rhythms. The William Tell Overture was a winner that had everyone standing and dancing while translating that energy on to the paper.
We did collaborative murals on spread out rolls of butcher paper. At this point the group had bonded to the point that as we moved around to different positions on the mural they felt comfortable enough to work into another persons space and allow that others would work in theirs.
For the last two sessions we hung the work around the room and all I could think of was “Jackson Pollock, eat your heart out” We had dripped and splattered with the best of them. WHAT JOY!
As I write this, I realize that I am smiling. I recall the pleasure I had seeing grown, burdened adults find their playful child. Each participant received a pocket sized doodle book. My hope is that at moments of stress they will take a few moments to take out their book and make doodle drawings. In that way they can recapture even riefly the release that expressive art can bring.
PermalinkOscar The Cat
Written by: pkunkemueller | March 4, 2010 | Filed Under Book Reviews
Making Rounds with Oscar by David Dosa, M.D.
Ostensibly this book is about an extraordinary cat that provides seemingly clairvoyant presence and comfort to dying dementia patients and their families in an exemplary long term care facility. Told by a compassionate doctor who is skeptical by scientific training and dismissive from a humorous, long standing aversion to cats, this is a very readable book. Dr. Dosa is a superb storyteller who tells many poignant stories under the guise of telling a different one.
While Oscar and his prescience are no doubt real, he serves the author as a convenient literary device to reveal the issues, decisions and their consequences that patients and their loved ones so often confront at the end of life. Some of his stories are heartwarming, others heartbreaking; but every one is a graphic example of the importance of thoughtful planning for end of life decisions.
By revealing his own degenerative illness and relating it to the lives of his patients, Dr. Dosa also illustrates many of the differences between dementia patients who can no longer express their wishes with the resulting burden placed on family members and his own expected ability to call the shots at the end of his own life. Ultimately, he reveals, in a thinly veiled comment at the end of the book, his own wishes: “And by the way, at the end of my days, I prefer the cat over the ICU”. This statement speaks volumes to those who read the book and understand its underlying message.
PermalinkCross over to her world
Written by: Paul Raia, PhD | February 26, 2010 | Filed Under Living with Alzheimer's
Picture this. Your 83 year-old mother who is well advanced into Alzheimer’s disease, says that she just saw her mother, and you know that “grandmother” has been dead for more than twenty years. Your gut desire is to snatch mom back to your reality. You want this all to go away, and you want your mother back the way she was before the Alzheimer’s. You catch yourself though. You don’t say what you so desperately want to say, because you know that, if you tell her that her mother is dead it will only catapult her into sadness, into grieving.
You know that the telling will be as if it is the first time she hears her mother is dead; only now, because of mom’s dementia, she doesn’t have the emotional capacity to resolve the grief. Within a matter of minutes she will have forgotten that you told her that her mother is dead, and here’s the true tragedy of it all, she will be left with the raw emotion of sadness with no context for that feeling. She only knows that she feels profoundly sad, and she doesn’t know why.
Perhaps, the kindest, most loving gift you can give your mother at this point in her disease is to enter her reality. This requires that you, first accept the disease and where she is in it, and second, that you become comfortable with using what I call; “Therapeutic Fiblettes” or, bridges into your mother’s world. Once you can cross over to her world, you and she can comfort and support one another. “Hey, mom, how’s grandmother doing today?”
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