Three years into diagnosis..

Hi , I would love for our members also diagnosed with EOAD to pop in for a little support - .

There is a lot of life to live, and you can find identity beyond work. Society does us all a disservice by teaching us that is the first sentence of our identities. Do you have any hobbies that you love and never had a chance to explore? Is there a senior center around you? It is a great place to check into for classes and social opportunities. Make plans with your friends, find things that make you happy. We're always here to share support and information. Sending love and light. - Warmly, Donna (Team Member)

GoofyGirl001 -

Let me start with IF you want, you are going to be fine and this is going to be OK!


Of course, to be like that you are going to have to make some decisions.

You said you had to give up your high powered career. I want to let you know - - you don't have to.

You don't just have to pass time.

You don't have to wait for things "to happen to you." You can do what you want, when you want, for as long as you want!

You don't have to have a precipitous decline. You can, instead, have a VERY slow one. How slow? Slow enough you probably will not die from this - but from something else.

In other words, you can continue to live your life.


Let me tell you my story. I have four college degrees (B.S., M.A., EdD, PhD) and spent most of my career in education. Initially I was a teacher and coach.


I had always wanted to be a school administrator and became a JH/HS principal followed by being a school superintendent the last half of my career and retired around 60.

Three years ago, at age 68, I was diagnosed with Mild Cognitive Impairment (MCI) and Alzheimer's Disease (AD). I was the first in our metropolitan area to be placed on a drug called Leqembi which is designed to slow down the progression of the disease. I received monthly infusions for 2.5 years was then placed on a once a month maintenance infusion - which I continue to be on.

Mild cognitive impairment is the lowest stage of Alzheimer's. I was recently given my annual testing and am still in the mild cognitive impairment stage. So, effectively, 3 years after I was initially diagnosed ,I have not declined.

During those three years, I have seen a lot changes in treatments and what is available. When I was originally diagnosed, there was just one drug most commonly used. All that drug could do was to help manage the symptoms as a person declined.

Now, there are two - Leqembi and Kisunla. While they are not a cure, they do greatly slow it down and help you to maintain where you are.

You may be wondering what a 71 year old man with Alzheimer's (me) is doing these days? Since my diagnosis 3 years ago, I often speak to groups and individuals about the need to get in early for diagnosis and treatment. Those groups include organizations like church groups, social clubs, etc.

In addition to that, I speak to many community community gatherings including filling the pulpit for two churches when their minister is gone. That includes leading the whole service, writing the sermon, preparing readings, and prayers.


My wife and I can often be found at pro hockey and college basketball games, the theater, movies, our grandkid's activities, and many more things. Effectively, we are just like anyone else.

On top of that, I read books magazines, and other things.

To be clear, I don't want to bore you with all the details of my life. I DO want you to know that you can continue to have a good life and do most, if not all, of the things you have always loved to do. Even better, you can do the things you always wanted to do.


What you can't do now is just sit on your butt. Well, you can - but only if you want to feel sorry for yourself and not get any better.


What you need to do is find a doctor who knows about the new drugs and who qualifies for them so you can get a treatment option.


If there is nothing for you now, there will be before too long as there are lots of new drugs in the pipeline. For example, I know a person who is on the Board of Directors of a company that is developing a test that can be given to a mother who is pregnant to find out if their unborn child has the genes that cause Alzheimers. Once that is finished, they plan to develop a drug that can be given to a fetus (while in the womb or shortly after birth) that will kill the Alzheimers in their body and they will never have to deal with it.


While that is in the future, right NOW we know they have given Alzheimer's to mice and rats - - - AND HAVE CURED IT!


So what can you do? You can sit around and wait for it to get bad. Or, you can get a doctor's appointment, and have a great life.


To be clear - not all doctors know about this. So if you go to one, and they have no solutions, like I told you about, FIND ANOTHER ONE!


What else does a guy who recieved an Alzheimer's diagnosis three years ago do in his free time? I just spent several weeks leading a communicants class for 7th graders at a church. My wife and I are leading an adult group at another church.
My wife and I also lead three Alzheimer's support groups that meet monthly at the hospital where I am treated for Alzheimer's. My neurologist asked us to do that after I was initially diagnosed. We had no idea what we were doing when we started but now many of the patients are also very successful.


On top of all of that - in a few days, my wife, I, and another couple, are headed for a 17 day cruise in Europe.



So, again, you have to decide what you want. Do nothing and you know what the result will be.


Or, get a referral to a neurologist and get treated.


I would suggest if you do that, you can not only lead not only a good life, but maybe you will have a better one than you have had.

The choice is yours. As the Grail Knight in the Indiana Jones movie said, "Choose Wisely."

Doyle F. Scott, PhD