My name is Julie. I'm a graphic design student from Ontario, and I thought I'd just make a request... send it out there to see if anyone would be interested in helping me. O
ne of the projects that I am working on for school is to create a book, poster or other form of communication to raise awareness about an issue that is important to me. I lost my grandmother to AD in 2006. She was the strongest and most beautiful woman I have ever known and I miss her a great deal, so when I got this assignment I instantly knew I wanted to do something related to AD. I would like to create a book that explains what AD is really like. I find that whenever I ask someone about it, all they seem to know is that it is a disease that causes you to lose your memory. I know it is far more than that. The later years I spent with my grandmother are proof.
I would like to put together a collection of stories, or definitions I guess, about what AD really is. If you had the opportunity to explain it to someone in simple terms, what it means to live with it, or to experience it. What people don't understand about it. Or the one thing you wish people just knew about AD. I would really appreciate it if you could just write a sentence or two in response. Answers are annonymous, unless you would like to include a first name. Please contribute. It would mean a lot to me to be able to put some faces to this terrible disease. I want people to know that it isn't just something out of a textbook. Any answers are greatly appreciated. Thank you so much for reading this.

Sweet Julie..... what a treasure you are. I hope you get a lot of responses. I am 66, dx several months ago. I have taught piano for 35 years... I am now ending those years. It is as if I lose a little piece of myself each day. I see it going, sometimes, and I can't get it back. I'm a new 'me'. Sometimes I like 'me', and sometimes I dispise 'me'. Decisions are very hard to make... multi-tasking is impossible. I have tried to pretend that I am the old 'me', and the effort is taking a big toll on my energy and emotions.... I forget who has come over to visit, where we were, and where I am supposed to be going..... That is all for now. I admire you for what you are doing. My adult kids and grandkids just pretend I am their "Old Mom".... hide heads in the sand.... I am probably the blame for that. Bye for now..... Ruthanne, Ohio

Your request really touched me as well. I am writing from Manitoba. My mom is having memory and confusion issues with no diagnosis yet. It is heartbreaking to watch. When I ask her something and she doesn't know the answer I can see the fear in her eyes and it is so painful to see. Sometimes it seems like the fog clears and I think "she's ok, my mom just like she used to be" and then there are the times when it just isn't the same anymore. May God bless you abundantly in your project. I know it will touch many people.

For family and friends, I think the most important thing to know is that if we don't get something right off, then their adding stress or even humor will make it impossible for us to remember. Second most, don't fill in the blanks for us unless we ask -- we need to work through it if we can.

Just my 2 cents...
Everyone is different, so there is not a clear cut answer to anything.
I am caring for my Mom who is early onset...

I fill in the blanks and my Mom thanks me for that...
again, everyone is independent and different.

Every minute of everyday,
My 2 goals for Mom are Independence and Dignity.

Julie,

You have quite the project ahead of you. However, with a disease like Alzheimers, there are no real answers, evrey case is different and every person that goes through it is different. It doesn't effect just the person, it effects the whole family, it may bring the family closer together, or it can tear the family apart.

All I can say is this....Alzheimers is not a funny disease, and the jokes that are out there about this disease are not what it really is until someone else sees someone they love go through it. When someone has this disease, over time, you gradually see the person's soul leave their body. They are not who they used to be, and you see a lot of mood swings and multiple personality and sometimes paranoia in the person that has it. They revert back to being a kid again.

Alzheimers has no set stage....some people get it quickly and decline rapidly; others get it and it takes years to see them decline. Alzheimers is a mystery and when they say it is a long slow death and the long good bye, it's true.

Best of luck on your project, please keep me posted and let me know how it goes.

Such a noble cause. I have suffered through this nightmare with my father and now with my husband.

People don't realize util they live it what a truly Devastating disease AD is. The emotional and financial toll it takes. It is a crippling disease that that slowly wipes away your memories, your life and yes as stated earlier your soul. Not just the person afflicted with AD but the families and caregivers as well.

And the differences in caring for a parent and a spouse are enormous:

I know that I am a different person today than when my father moved in and began suffering from the debilitating effects of dementia. For one thing, I was suddenly faced with the responsibility of taking care of my father. Role reversal is one the hardest things I ever tried to conquer. Torn between doing the right thing, becoming your parent's paret. Frightened, you could be looking at your own mortality,dealing with the added stress of marriage, children, quilt. I never realized until after my Father passed that I had been given a blessing, an opportunity to give back to him what he had given me. I was not always the best caregiver and I made many mistakes. I wish at that time I had been better informed. I did the very best that I could. OUr roles were reversed I cared for him and watched him as he faded and wetn backwards in time, lost his strength, his indestructible image. While all the while he knew the reality of his suffering and his shame.
Not a day goes by now that I don't think of him and wish I could have done more or done better by him.

With a spouse it's much different I for one feel most of the time I am irrelevant. Almost like I don't exist. It's like walking through a mirror backwards. Fighting to gain even an inch of grtound. Holding on to everything at once.. The hurt of being suspected or accused by your spouse. Spouses end up completely reshaping their own personalities. It would seem that this evil thing called AD has a primary goal to suck the life out of it's victim and the families.

I have grown a lot dealing with this battle and now I begin the new battle of putting the things I have learned into practice. Patience, the ability to enjoy the good days, the fact that I know now I don't always have to be right. I have tried to help and support other's who are going through this. I do things to raise awareness whenever and where ever I can.

Where family is concerned, the adult children, the aunt's, uncles cousin's, etc, I have learned to keep my chin up and my boxing gloves on.

There can be no more Devastation on an individual and their loved one's than Alzheimer's Disease.

Hello,

Don't know if you are still looking for info on Alzheimer's or not. I just came across your message. This is not exactly a definition but it is the story of my mother. She is now 98. Has been diagnosed with Alzheimer's for only about two years. She fel and had a very swift progression.

Most days she knows me (I see her every day) She may not remember your name but she still will have a kind word for you. She hasn't lost her sense of humor. I penned this with her before she was diagnosed. She currently is in Chapel Hill Community, a fine facility.

Hope this helps

Hi! I’m Celeste (Don’t call me Eunice) Myers

I was born in Akron in 1910. I guess that makes me just a little older than Methuselah. My son tells people that I voted for Abe Lincoln, but that’s ridiculous. I voted for the Democrat. My parents owned a grocery store on the corner of Sumner and E. Exchange Street in Akron. My three bothers, my sister and I grew up in our house next to the store. My future husband and I met at Central High School. Today I am the oldest living member of my family.

I was married to John Myers for 34 years. Johnny was an electrician, working most of his career in the rubber industry in Akron. I have now been widowed longer than I was married. Before we had our children I worked in the Cosmetics Department of O’Neil’s Department Store. I also was a dancer in the chorus line at the Colonial Theatre.

We had two boys, Don and Chuck. Don didn’t have any children and unfortunately he died four years ago. Chuck and his wife, Marty, have three children and five grandchildren. That makes me not only a grandmother but also a great one. I get to see all of them regularly because they all live in the area. I also have found an additional family that is wonderful. That is all of the staff at Chapel Hill. I love them and I am sure that they love me.

We raised our children on the near west side of Akron. I lived there for almost 50 years. From there I moved to a Senior Citizens Apartment up the street at Highland Square where I lived independently until 2006 when I moved here to Chapel Hill.

I was a charter member of my Akron AARP Group, and traveled with them regularly to places, some as far away as Myrtle Beach and DisneyWorld. I also belonged to a birthday club, until I was the only member left. It was fun going out to eat and partying but it really loses its luster when you are the only one at the party. In my earlier days I won a neighborhood swimsuit contest. I was dubbed Miss Fit… or was that Misfit?? Johnny and I enjoyed playing cards. He was better than I was but I usually won, because I cheated. He also was an excellent Chess Player and was Chess Champion of Summit County.

Well I’m going to get ready for my latest favorite activity, napping. It sure beats playing BINGO.

Hello,

The pain is so great. Watching my father claw for his life is unbearable. It is like he is a child screaming "I AM SOMEBODY...I'M JUST SURE OF IT!" My father was an attorney, well known, jovial, whitty, good-looking. Now, he is a shell of a person and he stinks. His eyes are fading in color and life. He wants his life back, he knows he had one. He knows that every day and punishes himself for what he feels is his "stupidity."

So...I try every day to make him laugh. I try every day to tell him he is THE most important part of our family. He forgets, but..."IN THAT MOMENT" he sometimes can remember and that is all I can hope for. He IS still a person, a son, a father, brother, grandfather and a greatgrandfather and I must always remind myself of that. I must remind myself so that in his unhappiness and when he is abusive to me, I can tell him I love him and mean it. Sometimes I pray for him to die. Sometimes he prays for that too. Anyway, I hope all this rambling makes sense to you. God Bless you and all the best, Victoria

When my mom was diagnosed with AD 12 years ago I read every book in our library about it. I combed the internet, joined chat rooms. As the disease progressed I did not have the time nor energy for this. Mother lived alone with early/moderate AD from 1996 to 1999. We moved her from her 2 story home in Arkansas to a small trailer next to my house in Louisiana. This was to help her keep her independence mostly. She lived in this little trailer about 3 years. When she needed home health I got for her, when she needed everynight to make her supper and tuc her in, I did it for her. Soon She forgot my birthday, she forgot who I was, she thought I was the nice neighbor lady who took care of her. She forgot the bathroom was in the house and kept going out back to look for the outhouse. I placed her in a nursing home in Feb 2001. This was one of the hardest decisions I have ever faced. She soon forgot how to walk, how to talk, she even forgot who she was. I used to laugh at all the silly things she did when she first was diagnosed. They are silly and it is ok to laugh. I never laugh about it anymore. There is reason that she is still alive. What I do not know. She sits in her chair, or lays in the bed, she eats pureed food that someone feeds her and trys to talk, but it is jibberish. Then every once in a blue moon she will look at me like she knows me, she loves me and when I say "Mama I love you" she smiles that same sweet smile I have seen for 49 years. MY goals have changed in the last 12 years for my mom. I am still her voice because she doesn't have one but I want her have no skin breakdown and no pain. The hospice has helped me this last year with that.
God bless the caregivers out there and God comfort those with the disease.

I came across this board by mistake but when I saw your request, I'd like to offer what I can. My 83 yo mom was dx last year.
But as others have said everyone is different in how this horrible disease affects them. The only common thread is the NEED to get the word out.
It started as forgeting here and there but as family it's like - your 82, your bound to forget. Had we known then that was the early onset maybe we could have done something sooner. That's where all the questions arise. And the guilt. The woulda, shoulda, couldas. You never know
Good luck with you project.
Kathy

Hi Julie,

Your request is a very important one. Many of us had the wrong idea about Alzhiemer's Disease (AD), and if we had known how many different symptoms there are, we would have known a lot sooner that my Mom had this disease. My Mom doesn't forget people or names. Her trouble is more in the confusion areas. She could no longer crochet years ago, she hid it by saying she couldn't remember a "pattern". She couldn't do jigsaw puzzles anymore which she used to love, I didn't realzie this till we sat down together to do one. A few years ago, she made a comment that she never made baked potatoes. I thought she was just saying that, maybe to make me feel guilty about not cooking enough. Then, I found the checkbook was off, she was subtracting when she should have been adding. She could still do math though. Christmas cards were signed funny, addressed sideways, and her writing was incoherent. I didn't know this till months after Christmas when family and friends finally said something.
Then, one day when writing a check, she completely forgot how. Not liking change of any kinds, and not understanding simple directions in recipes. For a while there I just thought "maybe Mom's not as smart as I thought she was...for many years she called herself "stupid", and I hated that...I think she knew something was wrong for years, but was afraid to really face it or tell anyone.

There is a new treatment that is working to stop the disease. Perispinal Etanercept. If I start to show any of these symptoms, I am going to start this treatment. Look in the Medications & Treatment Thread for Enbrel for Alzheimer's: http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/4081064272?r=9801087703#9801087703

Good luck with your research, Felicia

alz is a mental illness caused by brain damage affecting all portions of the brain; judgement,memory, reasoning, coordination, emotional empathy and control. Like most mental illnesses it is painful and confusing to the person and all of their loved ones.

Julie, I'm sorry for your loss to this terrible disease. But I might remind you not to extrapolate stories off this board for any materials, should you be tempted, as there are amazing stories. This is a safe place and we need our privacy. As a writer, I know how tempting it can be to use the material you read here and copy and past it somewhere else. I ask you kindly to do your research outside of this board and ask that if anyone is interested to email you privately rather than post their stories here, as I believe there are rules on this board about these kinds of endeavors. You might check with the board owner regarding the specifics.

Thanks

VJH, ALZHEIMER'S IS NOT A MENTAL ILLNESS CAUSED BY BRAIN DAMAGE. I STRONGLY ENCOURAGE YOU TO DO SOME SERIOUS READING AND SEEK OUT EDUCATION HOWEVER YOU CAN BEST DO THAT BEFORE YOU GIVE NONSENSE INFORMATION AS THAT.

Alzheimer's disease is a NEUROLOGICAL disease that AFFECTS the brain. In Alzheimer's disease the Hippocampus is primarily affected. In FTD it is the Frontal Temporal Lobes of the brain that are primarily affected. I cannot believe you have as many posts as you do and know nothing about the disease. Please do not give false information to folks here.

I am sorry you were offended by my opinion. But what do you think a mental illness is other than a neurological disease that affects the brain.

VJH, please read under Caregiver's section.

Hi Julie,
i am an about to be 80 year old female diagnosed almost two years ago with Early Stage AD. my mission is to get the word Out. WE NEED EARLY DIAGNOSIS. THIS IS THE STAGER WHERE MEDS WILL BE MOST EFFICIENT IN PROLONGING THIS STAGE. DON'T BE DISSUADED BY 'EVERYONE FORGETS'.
WE ENCOURAGE SCREENING FOR VARIOUS KINDS OF CANCER AND HEART DISEASE. HOW MANY PEOPLE ARE ALIVE TODAY BECAUSE OF EARLY SCREENING. I'M ONE. SO WHY NOT EARLY SCREENING FOR THE MOST DREADED DISEASE OF ALL TODAY.

vjh, I wonder if perhaps you live in a different country than the USA? Here, mental illness is still stigmatized. While you are right that it all occurs in the brain, and I also believe we should treat all brain disorders equally, the fact is that they are not. Insurance reimbursement rates are much better for organic brain disorders than for the various mental illnesses. Our neurologists see symptoms differently, and treat us differently, if they think it's dementia vs. major depression. Alzheimer's is terminal, major depression usually has symptom-free years.

Julie: A very important thing to know about Alzheimers is that many persons are being "mis-diagnosed!"

Somewhere between 15 and 20 years ago (I have boxes of files w/calendars to prove date if I ever need to do so), I was said to have "pre-senile dementia." Today, this would be called Early Onset Alzheimers' Disease (EOAD). My well-meaning internist had sent me for neuropsych evaluation with no mention whatsoever that my medications might be "messing with my mind." Perhaps she did not take the time to read the long list of adverse effects but focused only on "symptoms" as opposed to "probable causes" -- this does seem to be what happened.

It has now been well over a decade (again, do not have date) when I began taking melatonin every night before going to sleep. A dear cousin of mine and I laughed about this "anti-aging product." I immediately purchased three books on the subject and for a long time, did no additional research. Dr. Russel Reiter's book, "Melatonin" was enough for me and I learned the other sources quoted Reiter.

Over the years, my medications changed and I never gave any thought to any benefits from melatonin other than great sleep and lots of energy knowing that no matter what, I would still look older.

"Life" became very hectic when two of our grandsons' were diagnosed with rare immune deficiencies. I soon learned that low immune and Leukemia were on the same page. I did not know, however, that studies were beginning to indicate that Alzheimers is also linked to immune deficiency.

I was far from discovering that "inflammation" would become such an important word.

I did learn by reading Dr. Reiter's book about melatonin, that low level electric field exposures might be a big concern. There is a chapter on EMF's in his book.

I was "driven" to save my grandsons. How and why I thought I could do something significant enough to forestall full-blown Leukemia mystifies me even today. I was blessed with what I call "many angel episodes."

I learned the boys were each sleeping close to electric meters in their respective bedrooms. We also bought new beds for the boys -- they were sleeping in waterbeds. The boys "got well" -- no more chronic sinus infections or chronic asthma or gastrointestinal problems or ear surgeries.

While I had been reading more books about EMF/EMR (electromagnetic fields/electromagnetic radiation) -- one of which is a book titled "Warning the electricity around you may be harmful to your health" by Ellen Sugarman (title may be slightly different than what I have provided) was particularly meaningful because of the mention of "appliances." I had also read several other important books re EMF concerns.

Because I also became aware of the $46 million EMF RAPID Study and eventually the findings that immune deficiency and Leukemia are linked to ow level EMF exposure (but not being announced to the public), I conducted my own guinea pig studies. Guinea pigs placed by electric meter in my own home soon yielded diagnoses of asthma followed by white blood results that are "markers for radiation." In other words, the blood changes are the same as those identified in patients undergoiong radiation treatments. One out of each set of two guinea pigs died w/in 30 days' exposure!

What does all of this have to do with Alzheimers? Well, the story is much, much longer. We moved my husband's electric clock off of his nightstand and he soon starting improving in spite of his many years' documednted decline and eventual dx of Alzheimers. I also started Bud on melatonin. For a more comprehensive explanation, see my letter to Dr. Marilyn Albert at: http://freepage.twoday.net/stories/3038870/ ......

My work as an EMF activist with focus on "saving children from Leukemia" was changing to a focus on "all health problems" even tho hering about a single case of childhood Leukemia literally "tears my heart out" when so many cases are completely preventable!

After I also took my husband Bud off of his statin (Lipitor), his next round of neuropsych test indicted he had improved in three parts of his Executive Function. Bud's neurologist has stated "he does not have Alzheimers afterall...." That opinion came about primarily because I questioned the fact that Bud's PET Scan did not indicate any abnormality whatsoever -- not even "significant aging" or any particular white matter hyperintensities, etc.

It is apparent from what I learned about grandsons, guinea pigs, myself and my husband, Bud, that close electrical exposures -- particularly at night (melatonin studies) plus the complicating factors due to consumption of also toxic medications, all of which caused "inflammation," are inexorably linked.

In between all of what was going on in our lives, the 2002 California EMF Study (300 plus pages) -- a cost of around $8 mil, reported that low level EMF exposures are linked to brain cancer, Lou Gehrig's Disease (ALS), Leukemia and miscarriage.

Recent studies indicate that patients said to suffer from various aspects of "autism-spectrum disorder," as well as Alzheimers and Parkinsons, have low levels of melatonin.

As I preveiously mentioned, I already knew countless symptoms were linked to low levels of melatonin and my research on "inflmmation" was continuing to overlap.

Prof. Olle Johansson, Karolinska Institute, Stockholm, Sweden, has conducted over 400 EMF studies, along with several colleagues, one of whom is Oerjan Hallberg. A couple of their studies pertain specifically to Alzheimers.

Prof. Johansson agrees with me that EMF studies must include evalauations re "bed exposures" and can not be based on "ambient measurements" alone. I continue to work toward obtaining funding for the much-needed "specific studies."

Prof. Johansson has agreed to co-author a book titled "Inflammation and EMF/EMR." I do not need to do additional research in order to write the book. I do need time and help tho.

Right now, the need to inform the public of the vital need to maintain melatonin levels, is "critical." Low level electric field exposures -- particularly at night -- from electric clocks, electric blankets/mattress pads, cordless phone transformers, electric and gas meters, bad wiring close to bed, currents on waterpipes under or over beds, high frequencies on electrical wiring and more, all may be interfering with persons' pineal gland function of producing melatonin.

Melatonin is a powerful antioxidant which is "radio-protectant" and often referred to as "a cancer fighter." Melatonin is being subscribed by more and more mainstream medical providers for autism, Alzheimers, Parkinsons and more. The public, however, largely "remains uninformed."

All of my work is "volunteer" -- papers mailed at no cost upon request. I have a paper marked "File 2 RAD IRIS 2" -- which was sent to me in 1993 -- that recommends moving electric clocks away from beds and provides info re caution when using electric blankets and more.

While there is great need for the information I and Prof. Johansson can provide if and when our book is written, in the meantime, we both spend countless hours as activists trying to inform the public about simple changes that may not only prevent the onset of serious memory decline and cognitive dysfunction, childhood Leukemia, autism-spectrum disorders and much more, but may also greatly reduce severity of symptoms for those suffering from autism, Alzheimers, Parkinsons, pre-Leukemic conditions, and more...... I have a 43-page study on melatonin that has over 340 references (other studies) plus numerous other melatonin studies as well as studies re close electric field exposures.

I recently began using the term: "Reactvie Dementia" to explain my husband's remaining moderate-to-severe memory problems and cognitive impairment.

So, "the answers" are multi-faceted and like most of science, are seldom, if ever 100%. The "many clues," however, can no longer be ignored if we ever want to reduce explosions in Alzheimers, autism-spectrum disorders and other devastating neurological disorders as well as "preventable Leukemia.....!"

Feel free to call or email with questions. Due to my already overloaded schedule and ongoing interaction with public "one-on-one," I often do not get back to responding on the message boards. Best wishes and take care - Joanne

P.S. My website has a more comprehensive list of electric "items-of-concern" but is not all-inclusive. A recent "major concern" is learning how many persons of all ages are sleeping with cell phones under pillows, many even while "charging...."

I clicked before reviewing post.....now find I can not "edit" and do notice four or more "typos." Let me know if you want clarification..... Joanne