Lisa Genova – What You Can Do to Prevent Alzheimer’s (TED)

Posted at May 28, 2017 4:17 pm

This presentation is worth watching and linking to. There are so many truths about Alzheimer’s here. 

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USA Today’s Happily Ever After Blog Featured Robin Perini’s Hope … a World Without Alzheimer’s

Posted at Jul 20, 2016 2:03 pm

I’m so honored that USA Today chose to feature an article about my inspiration for my latest book, Forgotten Secrets and my efforts to raise money for the Alzheimer’s Association!

Robin Perini’s story of hope … for a world without Alzheimer’s

MomandMe

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Alzheimer’s Patients Can Fool Us!

Posted at Jul 20, 2016 1:55 pm

In the very earliest stages, our loved one can really fool us. They are so normal in so many ways we don’t realize the subtle changes. Looking back, although I didn’t really think about it at the time, Karen changed her behavior in very small ways.
 
For example, she gradually stopped cooking. I think she had a hard time selecting the right ingredients. We started eating out a lot — not fancy places — just quick food restaurants like Taco Bell, MdDonald’s and Village Inn, — places like that. Also, Karen got to where she would not order her own food. She would always say “I just have what you’re having” or “why don’t we just share”.
Brain Decline
 
One of her favorite expressions became “I may have told you this before ….”. I’m sure she realized she may be repeating a statement or question. I have been told the more intelligent a person is the more creative they can be in concealing their forgetfulness. 
 
In her book, UNTANGLING ALZHEIMER’S: THE GUIDE FOR FAMILIES AND PROFESSIONALS (A Conversation in Caregiving) by Tam Cummings, PhD, Gerontologist), Dr. Cummings states that the brain is – “an organ whose estimated 100 billion brain cells perform trillions of activities each nanosecond.” The brain’s complexity helps explain why the disease of dementia can take so long to be noticed. Even losing a few hundred thousand brain cells a day wouldn’t be noticed!!
 
If it’s any consolation, I’m not sure our loved ones realize a change is taking place, at least I hope not! On only three occasions did Karen mention her concerns. Once with our daughter, Robin, when she said, “I don’t want to be a burden to you and your dad!” after Robin wrote a note to help her remember where to meet me. On another occasion, she started crying and said to me, “Why don’t I know things!” When the Doctor at Mayo Clinic in Scottsdale, AZ told us Karen had Alzheimer’s, Karen started crying. Even now, with her in the Seventh Stage, we try to be careful what we say around her because I’m not sure what will ‘get through’ and she will understand. Remember, our loved ones cannot change, only we can change!!
 
Dale Perini

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Is it Alzheimer’s – Not an easy question or answer!

Posted at Jul 13, 2016 1:08 am

Our family knew something was not quite right with Karen and at the advise of one of my closest friends who was a Doctor, she was seen by a Neurologist in the largest city near us. The Neurologist told us Karen definitely DID NOT have Alzheimer’s. His diagnosis was that Karen just lacked concentration and needed to focus more, a common problem among long term classroom teachers who had to divert their attention from student to student on a daily basis. This was in 2004. 

Around that time we told her General Practitioner about Karen’s memory problems. He told me in confidence that she could be in a nursing home in a year. Shortly after that we moved to another city to be near our daughter (right across the street actually, which ended up being a blessing). After a couple of years with a new General Practitioner and a steady decline, one visit her GP asked her, “Well, Karen, how’s your memory!!” I knew right then she was in the wrong place! At that time she didn’t even know what he was talking about!Doctoring.

She was not even diagnosed with Alzheimer’s on her first visit to Mayo Clinic, but “Mild Cognitive Impairment.” And you should all know, not all doctors know anything about dementia. Her Dermatologist once asked me how she was doing. I told him she was very easy to care for and not aggressive at all. His comment was that nice people become nicer and mean people get more aggressive. I knew that WAS NOT TRUE. The point is get your loved one to a Doctor who specializes in or is aware of the problems of dementia.

We were fortunate enough to get Karen in a study of new drugs for Alzheimer’s. She was given verbal tests, spinal taps and brain scans. We don’t know if she got the real drug or just a placebo, but after a couple of years the drug was proving to be somewhat effective and they put her on the “real deal”. She was in that study for five years until she got so bad she couldn’t communicate.

Get your loved one to a Doctor who specializes in Dementia. That may mean you will have to leave the GP you trusted and loved so many years, but you need someone who understands dementia, Alzheimer’s and long journey you will be traveling.

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Our Alzheimer’s Journey: The Unnoticed Early Stages

Posted at Jul 1, 2016 4:21 am

_DSC6067 8x10My wife, Karen, of 58 years is 75 years old and started showing signs of mild cognitive impairment in her early 60s. One of the first things I noticed, as a Junior High Home Economics Teacher, that she was always the last person to leave school. Sometimes I would drive by after dark and her car was still in the parking lot. Even the Principals were gone! Since she taught cooking and sewing in those days, I just assumed she was getting her kitchen ready for the next day or correcting sewing mistakes. Or was she doing things more than once, forgetting she had already done them?

One evening, playing Trivial Pursuit with a good friend and his wife, Karen kept asking about their new grandsons. She would ask the same question, occasionally. My friend, a Doctor, called me the next day and asked me if I noticed anything unusual about Karen. He was concerned about her inability to keep the information straight about their grandsons. Anyway, he suggested I take her to a Neurologist for evaluation which I did. The Neurologist told us she was fine, just not concentrating as was the case of many more experienced teachers since they had to quickly change their focus from student to student.

On another occasion about this time, we were in a large mall and always made arrangements to meet a certain place at a certain time. At the designated time, Karen wasn’t there. After several minutes I went looking for her and found her walking around, looking for me. She was a little perturbed that she couldn’t find me. She had even been out to the car (she still had her own set of keys) and waited for me. I thought perhaps I had better listen better!!

As all of our life was perfectly normal at that time, I just dismissed these situations as nothing unusual. In retrospect, I think Alzheimer’s Disease was well underway destroying cells. According Untangling Alzheimer’s: The Guide for Families and Professionals (Untangling Dementia – A Conversation in Caregiving Book 1) a normal adult brain weighs approximately three pounds and has 100 billion cells. the brain then shrinks to one pound during the full course of dementia. In the beginning of course, a few million cells here and there aren’t noticed. Unfortunately, it’s only the beginning.

Dale Perini

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Walk to End Alzheimer’s Is Here (Albquerque, NM)

Posted at Sep 26, 2015 2:42 am

IMG_0322September 26 is the day of the Walk to End Alzheimer’s. I’m walking in honor of my mother, Karen Perini, and in honor
of my father, whose love and devotion of her epitomizes the very definition of hero.

I have a great team who has agreed to take part with me. Here’s the Team Perini Page. 

I’ll be hanging out in Albuquerque with a purple pony tail and a balloon.

Here’s the route. (Direct Link to Print). If you want to come out and cheer us on. You’re welcome. 

Alzheimer's Map

There’s still time to donate if you’re interested. I will tell you that the Alzheimer’s Association has been a God-send to me and my family. I highly recommend this organization if you’re facing dementia or if you have a loved one with demential. To donate, click on Dale Perini’s Walk Page.

Bless all of you who are patients, caregivers and loved ones. This is a difficult journey, but we are not alone.

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Walk to End Alzheimer’s!! – Get Involved! Please!

Posted at Aug 16, 2015 2:15 pm in

Dear Friends and Family,

This isn’t my usual type of post, but I wanted to share something with my wonderful reader and writer family! One of the reasons you haven’t seen a book from me, and won’t for a bit longer (though I’m working on Rafe’s story from the Carder Texas books), is that I have been helping take care of my mother, who has Alzheimer’s. I thought I’d let you know, but also ask for the support from you wonderful readers.

11206572_10205466894345998_2557114747271998682_oI’m joining the Alzheimer’s Association Walk to End Alzheimer’s® on 09/26/2015. I’ve committed to raising awareness and funds to support Alzheimer’s care, support and research, and of course, in honor of my mother. I need your help. Together, we can become an unstoppable force against Alzheimer’s disease. You can help in three ways:
1. Join me in the fight against Alzheimer’s by walking with me
2. Help me reach my goal by making a donation to my fundraising page.
3. Join a walk in another location, or even start a team!

The Alzheimer’s Association has helped my family so much throughout our journey. I can’t begin to tell you what their classes, their support groups, and just their resources have meant to our family. The research–well, that goes without saying. I hope to make a big contribution in the fight against Alzheimer’s by reaching my team fundraising goal of $2,500.00, and I’d be so grateful if you would join or sponsor me. Your support of Walk to End Alzheimer’s will help the Alzheimer’s Association to enhance Alzheimer’s care and support and advance critical research for all those affected by this devastating disease.

We all have a reason to end Alzheimer’s. Please visit my fundraising Web page to sign up or to donate today.

Hugs to all of you…and please, if you are so moved, pass this post and link on!

Happy reading everyone and I’m working on my new books as fast as I can!!

11896063_10206182288670409_2326340064429796920_n

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Happy Easter

Posted at Apr 5, 2015 6:11 pm in , ,

Slide1

May this day bring you every blessing. Happy Easter. Here is a beautiful version of Hallelujah to enjoy.

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Wacky Weekend: Office Evolution 3

Posted at Jan 25, 2015 6:07 pm in , ,

My writing office is coming along. I now have my new shelves and cubbies finished and I’ve started throwing away the old, and putting back in those items that I use on a daily basis.

Here’s the empty office, with my computer and printer set up. I’m SO excited! 

Do you find organizing fun? I don’t like doing it, I will admit…but I LOVE having done it :-).

office_shelves Office_comp

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Fitness Friday: Breathing is Good

Posted at Jan 23, 2015 6:37 pm in , ,

Slide1

I’ve been having allergy problems recently. My voice is about a half octave lower than normal, my throat feels a bit closed up and my breathing has been strange. I’m not sure if it’s the new Printventilation system at my day job or the fact that I’ve been cleaning out my office and garage at home for the last month…but whatever the cause it’s impacting my energy level and my ability (and desire) to exercise.

My trainer, Ingrid, recommended I do some deep breathing exercise, because when I work out, by the end of the session I’m breathing better. The thing is, when your breathing is off, it’s harder to get to the gym. At least it is for me.

I’ve surfed the web and found some great breathing exercises from Dr. Andrew Weil. (Reference: http://www.drweil.com/drw/u/ART00521/three-breathing-exercises.html).

He offers three types:

1) The Stimulating Breath (which is inhaling and exhaling rapidly).

2) The Relaxing Breath (which is complete exhalation and inhalation and holding your breath).

3) Breath Counting (focusing on exhaling).

I’m finding number two helps me the most right now, but I must say that all three have their good points. And not just for getting through allergy season (or whatever is going on).

Take the time to try them. You may want to make them part of your daily fitness routine!

Note: Allergies and Asthma can be serious, so please, if you’re having symptoms do go and see your doctor. It’s important.

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Thursday Take Five: My Fave Author Movie

Posted at Jan 22, 2015 12:26 pm in , ,

Some movies hit you JUST right. Movies about writers make me smile. A few that I’ve seen and enjoyed include:

AmericanDreamerThere are more, but those are some of my favorites. But, my absolute favorite of all time. Drum roll.


American Dreamer. Have you even heard of it. It’s about a woman who is a huge fan of a romantic thriller author and enters a contest. She wins a trip to Paris, hits her head and thinks she’s the main character in the book. I laughed out loud watching this movie, and to this day it’s my all time favorite. If you haven’t seen it, please do. It’ll make you smile. And we all need more smiles!

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Wednesday Wisdom: Einstein and Miracles

Posted at Jan 21, 2015 2:37 pm in , ,

Miracles. These are the things of the Bible, fairytales and for other people. Or are they?

In our cynical world, we have explanations for everything. Or do we?

Einstein, one of the greatest minds of humankind has a thought on the subject. And perhaps one you won’t expect. What do you think?

Einstein Quote

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Tuesday Tunes: Stronger Woman

Posted at Jan 20, 2015 2:49 pm in , ,

In perusing my Itunes library, I realized something. I love music that inspires and with a message. I have some fun songs as well, but I guess I love in my music what I love in books: I want to feel something. And I want that something to enrich my life. Here’s one of my favorites. So, believe in yourself…and then share yourself with others. Inspire someone else. Because the more you can reach out, the more fulfilled you’ll be.

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Monday Memories: What I Wish I’d Stuck With

Posted at Jan 19, 2015 2:54 pm in , ,

Looking back, there are a few things I wish I’d have done differently. I’m relatively certain most people feel that way. What’s one of mine?

little girl in yellow dress asleep on pianoThe piano.

I took piano lessons for several years. We moved a lot, so I changed teachers. I progressed. But in order to play a new song, I had to practice a lot. Then, by the time I reached junior high school I got into swimming and I worked out with the high school team before and after school. Piano fell away.

I always wished I could pick up a piece of music and just play. If I weren’t writing, I think I’d take piano lessons again. Maybe someday. I hope so.

Do you have something you started out and wish you’d kept at? I’d love to hear about.

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Wacky Weekend: Office Evolution Part 2

Posted at Jan 17, 2015 2:38 pm in , , , , , ,

So, I spent more time in my office closet this weekend. I’ve been in my home for about ten years now. When I moved in we put a ton of stuff into my office closet, but now I’m cleaning it out. New Year’s Cleaning instead of Spring Cleaning you might call it.

I found this:

IMG_0194

 

Anybody out there know what it is? For those who don’t…it’s an electric typewriter. Pretty cool for its time. You could switch out a font wheel and have italics, if I remember correctly. But mostly, it had a CORRECT button. That meant no corrector paper or white out! YAY!

For those too young to remember, when you wrote a paper on this, you couldn’t go back and revise unless the word you wanted to fix was the same number of letters as the word you mistakenly wrote. I composed 20-page and 30-page school and college papers on this wonderful beauty. I even started my very first book on it. I wrote quite a few pages. None to see the light of day, of course.

It works. It’s in great condition. A few scratches exist on the case that covers the keyboard, but that’s it. 

What do I do with it? Toss it? Send it to a museum? Let it gather another ten years of dust? I don’t even use it to fill out forms or address envelopes anymore. Sigh. I don’t even think Good Will would want it.

What do you do with the obsolete when it still works?

Gasp.

Hopefully people don’t fall into that category..because I’m getting close, I’m afraid!

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Fitness Friday: Ouch – Charley Horse!

Posted at Jan 16, 2015 2:29 pm in , ,

This morning I was relaxing in a recliner when my calf muscle just started to spasm. I really hate charley horses. They are painful, and even after stretching them out they tend to linger.

Calf leg pain, muscle injuryA charley horse is really just a muscle spasm. I get them occasionally. Usually in bed or when I’m relaxing. What has helped me: drinking a glass of milk or orange juice and eating a banana. A hot bath works wonders, as does ice after the fact. If I’m still sore at the end of the day, I pop a couple of ibuprofen as well. And of course, hydrating. 

I find I usually get them when I’ve upped my exercise a bit and aren’t as hydrated as I should be.

According to the National Institutes of Health

  • “Stretch to improve your flexibility.
  • Change your workouts so that you are exercising within your ability.
  • Drink plenty of fluids while exercising and increase your potassium intake. Orange juice and bananas are great sources of potassium.”

I would love to know if you have any great suggestions on dealing with charley horses! Happy Excercising!

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Thursday Take Five: Television Jewels

Posted at Jan 15, 2015 4:08 pm in , , , , ,

Remote control in the hand against pop-corn and TV-setPeople say there’s nothing on TV anymore. I think they’re wrong. I hadn’t watched much television for about 3 years (ever since I sold my first book). Priorities, you know.

But, when I took a few months off to help with my mom’s care, I found myself searching for a bit of distraction when she was resting or asleep. Netflix, Hulu Plus, Amazon Prime Instant Video, and Xfinity On Demand and Apple TV became my friends searching for inspiration, distraction and great stories. 

I found several. So what are my favorites?

Blue Bloods – My absolute favorite. It’s what I want to do with my books. Suspense, mystery and family drama. Just perfect.

The Blacklist – Strangely compelling. A thriller with twisted villains and an anti-hero I can’t seem to look away from (of course I’ve always loved James Spader).

Madame Secretary – Compelling International Intrigue, great family drama and a strong female character. I’m all over it.

Downton Abbey – Do I really have to say why? I just love the character interactions.

What are you favorite television series? Are they from the past or the present? I’d love to know.

 

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Tuesday Tunes: I Won’t Give Up

Posted at Jan 13, 2015 3:52 pm in , , ,

Some songs truly touch me. I write romance novels because I love the optimism of the genre. There’s too much tragedy in the world. But there are also beauty and hope and honor and heroes. 

I’ve been thinking a lot about my writing lately. What kind of writer I want to be known as? I love writing suspense, but more than that, I love showing men and women who face challenges and don’t give up. This is one of my favorite songs that really speaks to what I try to do with my writing. Enjoy!

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Monday Memories: My Milwaukee Brace

Posted at Jan 12, 2015 3:27 pm in , ,

Most people (except those I went to school with) don’t know it, but from the time I was twelve until I was a sophomore in high school, I wore a Milwaukee Brace for scoliosis. My spine was curved, and the lower curve was about 30 degrees. The upper curve around 20 degrees.

A school screening test found the condition. I ended up with my parents at a hospital helping kids with conditions like spina bifida, complex orthopedic conditions and long-term disabilities. 

I was twelve, having just moved to a new school and over spring break I went from outgoing to someone just trying to hide. The best part was that because I was in swimming and dance, I could take my brace off, and it didn’t count against the 1 hour per day I was out of my brace (Yep, I slept in it). Here’s what a brace looks like, though mine had a white girdle and white straps.

scoliosis(photo with thanks from http://www.bracingscoliosis.com/milwaukee-brace.html)

I won’t deny I hated it. The first time, after I put it on, I saw my image in the rearview mirror in my folks’ car and left the car, crying, running down the hill). I felt sorry for myself. When I went back to school, some kids told me how sorry they were for me. And yet, every time I went back to Carrie Tingly Hospital (at the time it was located in Truth or Consequences, New Mexico), I would recognize how blessed I was, and how brave other children were. 

It was one of those journeys that made me who I am. Not all the memories were good, but it built me into the person I am today. So I am grateful.

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