Tag Archives: Alzheimer’s

“The Genius of Marian” an emotional, intimate look at Alzheimer’s

It may seem odd to say that a documentary about Alzheimer’s is beautiful, but there is much beauty in the family-made documentary, “The Genius of Marian,” as well as a great deal of love.

That’s what makes the devastation that Alzheimer’s unleashes on this one close-knit family so utterly heartbreaking.

Photo: geniusofmarian.com

Photo: geniusofmarian.com

The documentary is about two remarkable women, mother and daughter, both who end up with Alzheimer’s. Marian Williams Steele was a talented artist and vibrant woman. She was diagnosed with Alzheimer’s in the late 1990’s and passed away in 2001 at the age of 89.

Her daughter, Pam White, is equally fascinating. She is a beautiful woman with an amazing smile who was an actress and model. After her mother passed, White planned to write a book about her called, “The Genius of Marian.” Sadly, Pam herself was diagnosed with early-onset Alzheimer’s at the age of 61, just as she was getting started on the book.

Her son, Banker White, decided to make a documentary about these two remarkable women. He doesn’t hold back, showing the ups and downs that occur with Alzheimer’s, and how the family struggles and copes with the situation.

White’s husband is a testament to the power of love. He does an incredible job as caregiver for his wife, a role he was thrown into with no experience, like many family caregivers.

I don’t want to give anymore away because you really should see the film. The good news is that you can do so for free thanks to PBS, through Oct. 8. I watched it on the PBS channel on my Roku box. You can also watch it online. If you can, please consider donating to the filmmakers’ charity, The Genius of Caring.

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‘Alive Inside’ and the power of music

I was able to go see the documentary, “Alive Inside” this weekend and it definitely met and exceeded my expectations.

As many of you probably know, the inspiring project at the center of the film is best known by a clip posted on YouTube of an elderly African-American man named Henry, who is in the latter stages of Alzheimer’s. He lives in a nursing home and his caregivers say he is barely verbal, usually keeping his head down all day long. Then they put the headphones on, and play the beloved music of his youth. Like a switch, Henry becomes alive, and most surprisingly, quite verbal and coherent. The effect is truly amazing. The video has gone viral, receiving millions of page views.

alive inside-poster

Dan Cohen, through his Music & Memory program, has a mission: he wants to bring personalized music to every nursing home resident in America. It sounds like a simple, clear-cut mission, but it turns out to be quite a challenge. Bottom line, there’s more profit to be made in the creation and marketing of ineffective medications than there is in Cohen’s proven grassroots program.

The benefits of music to those with dementia and other mental illnesses is astounding. Music has a greater impact on us than just making us tap our toes and fingers. Music touches the deepest parts of our emotional core, that usually remain intact even into the latter stages of Alzheimer’s.

Music has been part of my life for as long as I can remember. My dad would sing to me as a baby, I had a collection of Disney records as a little girl, and then I went on to develop my own eclectic taste in music as a teen and adult. Music can move me to tears or pump me up with energy. I can’t imagine life without music.

I wish I had understood the power of music better while my father was still alive, because I’m sure he would have loved to have heard Bing Crosby and Frank Sinatra.

Another point the documentary makes is how lonely and dehumanizing institutional life is for the residents. While music is not a substitute for human companionship, it can help fill a void.

“Alive Inside” is getting great reviews and I hope the buzz around the film will translate into donors who will help Cohen reach his worthy goal. If you have an iPod collecting dust, please consider donating it to this program.

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Showing appreciation for the dementia caregiver community

A big thank you to Neighbor Nancy and Ann Ahnemouse for nominating me for a Very Inspiring Blogger Award. Nancy I have had previous contact with but I don’t believe I have with Ann, so it was a pleasant surprise to hear she had been following my blog for quite some time. It is yet another reminder of the wonderful community of caregivers waiting to be found in the blogosphere.

The rules are simple:

Thank and link to the amazing person who nominated you.
List the rules and display the award.
Share seven facts about yourself.
Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
Proudly display the award logo on your blog and follow the blogger who nominated you.

7 facts about me:
– I have Celiac Disease, and have been on a gluten-free diet since 2005.
– I’m a cat lover.
– I like my coffee black, no sugar.
– I’m a bourbon aficionado.
– I was born and raised in California, but have no interest in returning.
– A big Greek salad is one of my favorite meals.
– Stephen King is one of my favorite authors.

Bloggers you should follow (For sake of time, I have less than 15 but will try to add more soon!)

My Neighbor Miss D Nancy is a devoted elder advocate, and has been the driving force in helping a neighbor in her building who has dementia return to her home after she suffered abuse from family members.
Ann Ahnemouse As I said, this is a new blog for me, but she’s been posting for a few years! Ann writes about her journey with her partner, and how his dementia impacts their lives.
terry1954 I’ve been following Terry’s blog for quite a while. Terry was the sole family caregiver of her brother, who had MSA. He died this year, and while the end of his suffering was indeed a blessing, there is a giant hole left behind when our loved ones depart, no matter the circumstances. Terry is a fearless writer who shares her thoughts on many topics.
Alzheimer’s Speaks: Lori La Bey is a tireless advocate for caregivers. She has a radio show as well!
SaveEveryStep: You should subscribe to this blog for the weekly “Joe’s Letter” post alone. The letters are from the blogger’s uncle from WWII and they are so fascinating! If you love nostalgia, you’ll love her blog, as she often writes about the fashions and music from her childhood and adolescence. But Helen Spencer founded the website, SaveEveryStep.com in memory of her mother. She is giving back to the world by allowing you to capture your own family’s memories and preserve them for free, a useful service to anyone, but especially for families touched by Alzheimer’s and dementia.
Hot Dogs and Marmalade: This blogger’s mother has Alzheimer’s and she writes both poignant and humorous accounts of her family’s life. You’ll have to read her blog to find out the reason for the unusual title of her blog!
My Demented Mom: Kathy Ritchie doesn’t sugarcoat one bit of her experiences caring for her mom, who has frontotemporal dementia. Kathy is in her 30s and is now a mother herself. Her blog is breathtaking in both its agony and in the way she expresses her love and dedication to her mother.
Quilt of Missing Memories: Talk about a family devastated by dementia. Jacquelyn’s father, mother and husband all have a form of dementia. Her father has passed, and late last year, so did Jacquelyn’s husband. I appreciate this blog because of the simple and joyous photos and short poems that are posted on a regular basis.
Lori’s Lane While not a caregiving blog in particular, the blogger did find herself in that role when her husband suffered a serious accident on the job. I love this blog for the insightful posts and the uplifting quote every Friday.

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Is unexplained weight loss an early symptom of Alzheimer’s?

I came across an interesting article about a piece of Alzheimer’s research I had not heard about before. Apparently, researchers at Weill Cornell’s Feil Family Brain and Mind Research Institute found a possible connection between the buildup of amyloid-beta peptides and weight loss. The peptides create the notorious plaques in the brain that is commonly associated with Alzheimer’s disease. The otherwise unexplained weight loss often occurred several years before symptoms of cognitive decline were diagnosed.

scale

According to the researchers, the amyloid-beta peptides interfere with the body’s ability to regulate its weight. If the research proves to be accurate, it is yet another cruel and devastating way Alzheimer’s destroys the body.

My dad was always on the lean side so it’s difficult to say if he suffered from weight loss early on in the disease. By the mid to late stages, my father was certainly wasting away, but up until the last couple of months of his life, he had a voracious appetite.

The more we learn about Alzheimer’s, the more we understand that this disease can manifest itself in ways we never imagined before. Alzheimer’s is not just about losing your memory; the disease attacks the brain in ways that can impact everything from swallowing to weight control.

Did you notice otherwise unexplained weight loss in your loved one before they were diagnosed with Alzheimer’s disease?

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Turning 40: My hopes for the next decade of my life

This Saturday, I turn 40. I’m not one to worry about wrinkles or grey hairs. My recent physical showed that I’m in good health for now.

But considering the health issues that have impacted my family over the last several years, I can’t help but worry.

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It is somewhat ironic that if you had asked me before my parents became sick, I would have chosen Alzheimer’s and cancer as the diseases I dread most. Little did I know that I would have to face both diseases head-on, with dementia striking my dad and colon cancer striking my mom. I always figured Dad would get cancer, being a smoker since he was 16. Mom doesn’t smoke and eats a mainly vegetarian diet, and she gets colon cancer. Go figure.

With Mom’s health in the balance again, it’s not really feasible to make concrete plans for my 40th year, let alone the next decade of my life. But then again, if life has taught me anything over the last few years, it is to live in the here and now.

Still, there are a few wishes I have that I hope I can make come true over the next decade of my life.

  • I want to write a book. Whether it be memoir, fiction, or self-help, I’m not sure yet. Maybe one of each! I’ve lit my creative flame again over the last few years, but I know it will take hard work and focus to keep it glowing. And yes, I do want to publish the book, even if I have to go the self-publishing route. I plan on signing up for a writer’s workshop this fall.
  • I want to visit my father’s homeland, Ireland. I had planned on doing this in my 30s, or as a special gift on my 40th birthday, but alas, that is not going to happen. But I can still make it happen over the next few years. Making that family connection is important, and I think will hold greater meaning for me now than ever before.
  • I want to continue and expand my Alzheimer’s awareness work. In particular, I would like to do more hands-on advocacy work.

I’ve been through many life-changing events over the last decade, and I’m sure I will face more moments, both good and bad, over the next decade. My 40th birthday wish is that I approach these moments with a bit more wisdom, and much more compassion.

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Guest post: Diagnosing Alzheimer’s Disease: How Can Loved Ones Help?

A new case of Alzheimer’s disease is developed every 67 seconds. Meanwhile, the number of Alzheimer’s patients is on the rise, with the numbers expected to double or even triple by the year 2030. This degenerative brain disease affects millions of people around the world…and has no known cure. Over time, it impacts your memory function, mood, and even your independence. With so many life-altering symptoms related to the disease, early detection is key. Unfortunately, obtaining an Alzheimer’s diagnosis can be difficult.

Dr. David Tal of the Age Matters Clinic in Toronto.

Dr. David Tal of the Age Matters Clinic in Toronto.

Despite the fact that Alzheimer’s affects the lives of men and women across the country, diagnosis can take months or even years. Why is this the case? Early symptoms may appear to be signs of other diseases or may be dismissed as issues related to aging. This can prolong proper diagnosis, which in turn causes patients and loved ones to feel frustrated and powerless. Are you wondering what you can do to speed things up? Then you’ll need to understand how Alzheimer’s disease is diagnosed – and what to be on the lookout for.

Early diagnosis is important. For starters, it allows families to look at treatment options for symptoms related to the disease, like depression. It also gives patients and their loved ones the opportunity to focus on a healthy diet and lifestyle. This has been found to slow down the progression of the disease. In addition, early diagnosis gives family members more time to find appropriate care plans for the patient as the disease progresses. However, the reality is that Alzheimer’s disease cannot be diagnosed completely accurately until after death. That is why a proper diagnosis can be drawn out. Doctors use a process of elimination that has an accuracy of about 90%.

It starts by finding out more about the patients’ medical history. This allows doctors to determine whether there are other medical issues at play and how to come up with the best treatment plan for their needs. Some of the questions your loved one will be asked include: Are you taking any medications? Do you have a family history of dementia or Alzheimer’s disease? Are you dealing with any current illnesses? What type of issues or symptoms have you been experiencing? and so on. The answers to these questions will help the medical professional get a better understanding of the situation.

From there, the doctor will give a mental state exam to test the patients ability to problem solve, their memory skills, and attention span. This can reveal whether or not there has been a decrease in memory function. Next is the physical exam. This will let the doctor know more about their overall health and physical condition. It can also signal whether the patient has another medical problems that has similar symptoms to Alzheimer’s disease. X-Rays, blood tests, and brain imaging will likely be done as well to rule out any other potential health problems. The results of the questions, exams, and tests will help to pin point a diagnosis.

So, what can you do to help during this process? Show your support, take note of any changes in memory, mood, or behaviour, and ensure your loved one gets the proper medical attention they need. It is important to act quickly. The sooner your loved one is diagnosed, the better. If you feel unsure or overwhelmed, seek the help or advice of a professional.

Have you noticed a friend or family member showing signs of Alzheimer’s disease? Then help them take that first step towards diagnosis. It may seem scary at first – but receiving a medical assessment will lead to a plan of action. Whatever the outcome, remember: your love and support can make all the difference.

About the author: Dr. David Tal has more than twenty years of clinical experience. He manages the Age Matters Clinic in Toronto, Canada. He strongly believes that medical treatment can improve the life of Alzheimer’s and memory loss patients.

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Free Alzheimer’s books in honor of The Longest Day

UPDATE: Thank you to all who requested a book. Your copy will be mailed soon. And a big thanks to all of you who participated in The Longest Day.

Today the Alzheimer’s Association sponsors The Longest Day, where from sunrise to sunset everyone is encouraged to participate in Alzheimer’s awareness activism.

Chicken Soup For the Soul: Living With Alzheimer's and Other Dementias

My way of participating this year is to offer a free copy of “Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias” to anyone who is interested. I have a limited supply, but I can fulfill several requests. They will be handled on a first come, first serve basis. If you would like me to send to a friend, relative, organization, etc. I am happy to do that as well. I just want these inspirational and moving stories to find a good home where they will be appreciated by others who are on a similar journey.

Rest assured I will never share any contact information with anyone else.

I will cover all shipping costs. Simply email me at joyjohnston.writer@gmail.com or leave the mailing info in the comment section below. I will update this post when I have received the maximum number of requests that I can fulfill.

What are you doing for The Longest Day?

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