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!!

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