Hello. My name is Ed. My wife's name is Mindy. In early October of 2011, at age 60, I was diagnosed with Early Onset Alzheimer's Disease. This blog was created to share this journey my wife and I are about to embark upon with others who may be interested in understanding what it feels like for both the person taking the trip and the person who is along for the ride. We realize we are not the first couple to take this trip, nor sadly will we be the last.
A friend sent me a note this week about the five year anniversary of the passing of her son, who was her only child. Apart from her obvious sense of sadness and loss, it reminded me of how quickly time seems to go by at my age (now 61 I am...). It also reminded me of the first part of the first quartet of a four part poem by TS Elliot...
Time present and time past
Are both perhaps present in time future,
And time future contained in time past.
If all time is eternally present
All time is unredeemable.
What might have been is an abstraction
Remaining a perpetual possibility
Only in a world of speculation.
What might have been and what has been
Point to one end, which is always present.
Footfalls echo in the memory
Down the passage which we did not take
Towards the door we never opened
Into the rose-garden. My words echo
Thus, in your mind.
But to what purpose
Disturbing the dust on a bowl of rose-leaves
I do not know.
While I still can at least... a friend recently sent me a link from the old days with a lot of photos that brought back a great many memories of my youth... for example, I can still remember many evenings sitting at the kitchen table helping my Mother fill up her books of S&H Green Stamps...
I see it's been awhile since I have posted here... but today I post up some possible news of a breakthrough in the treatment of early stage Alzheimer's Disease. Canadian researchers have seemingly proven in early tests that if the memory cells of the brain can be constantly stimulated with continuous electrical current then the deterioration of memory might be arrested. Thus far, they have only tried this in a few patients, but the majority showed improvement. Also, it only seems to work in people in the early stages of the disease. The next step is a larger study some of which will be conducted in the United States. See the details at the video link below...
Also, in other important news, St. Patrick's Day was last Saturday and the results for the best commercial celebrating the day has been posted. See this link.
The doctor said that Ed is in the 10% of people with ad that get non aura migraine headaches, which he was getting at least three to four times per week. He got some medication for them. Also Ed is up at night which if you look up early stages and symptoms is quite commom...but he was also given medications for that. He cannot be a part of the special study because his arecept was raised to a therapeutic dosage in December, and he has not been on it long enough to qualify for this study. The arecept has improved memory and repetitive questions... but if you know Ed you can see some personality differences. I love his sense of humor about it all as he writes in this blog...and his intelligence...and that is truly "our" Ed. But at times he is obviously not himself...and that's life with ad.
The Rhinestone Cowboy plays one last concert in Phoenix this Saturday...but I won't be going. I am sure it will be fine, but I've learned through bad experience that paying good money to hear big name acts on their last go round can sometimes be disappointing. No... I'd prefer to remember him as great as he once was.
Nonetheless NPR had a nice piece about his own journey with Alzhiemer's. Apparently the disease does not care if you are a celebrity or not... you can hear it here:
Well... not exactly today, but maybe someday. Mindy and I visited Dr. Flitman, my AZ doctor, yesterday to seek a remedy for some recurring headaches and insomnia I've been experiencing lately... he prescribed a couple of more medications... but after nearly six months since my diagnosis, he seems optimistic that, because I am afflicted with the least aggressive of the three genes that cause Alzheimer's, I might actually have as many as five years before I progress into the next stage of the disease. We also agreed to be screened for a new Alzheimer's study... but I have to take some sort of lucidity test to get in... and the ironic part is, if I am still too smart, I fail... and won't be admitted to the study... go figure... stay tuned...
Meanwhile, there have been some interesting articles and developments recently related to the disease. Please click on the titles for direct links to each expanded article...
The Obama Administration announced yesterday a $130 million increase over two years in the funding for Alzheimer’s Disease research, as well as $26 million of additional funding for support of caregivers and other programs toward the prevention and treatment of Alzheimer’s.
... two independent, new studies suggest that Alzheimer's spreads from cell to cell rather than independently forming randomly throughout the brain. DUH! ...while this seems rather obvious to the lay person, it is only now being scientifically proven. This is because that serious research about Alzhiemer's has only been underway since the 1980s. Considering that Alzhiemer's affects 5.4 million Americans and will approach epidemic levels as the population ages, you'd think we'd take it more seriously. The disease manifests itself in another American every 69 seconds....
An electrical brain-stimulation technique used to treat Parkinson's disease and chronic pain appears to enhance human memory as well, according to a tiny but intriguing new study that bolsters hope for one day developing a nondrug treatment for memory problems, including ailments like Alzheimer's disease.
Ed Was More Contented with Alzheimer’s Disease: What If He Hadn’t Gotten It?
I’m writing to tell you about a most unusual person with Alzheimer’s.
You’re going to think I’m crazy. You really are.
But to tell you the complete truth I have to tell you that Ed was far more contented when he developed Alzheimer’s than he ever was before. Yes, this is true.
Ed, my beloved Romanian soul mate, was in his late 80s when he began becoming demented. He knew something was wrong. He was endlessly frustrated and afraid of his early symptoms. What’s more, he spent a lot of time thinking about death.
He was angry and depressed. He drank to excess – starting at noon and continuing all day and half the night.
He drank vodka, and he didn’t drink it from shot glasses. He filled a regular water glass half full every time he wanted a drink. And he wanted a lot of drinks.
He stayed up until 3:00 in the morning and he slept until noon. Then as soon as he got up he started drinking again. Was he an alcoholic? No. He just drank a lot.
I couldn’t take care of him at a certain point and we fought constantly about him going to a nursing home. He said he’d die first. But eventually he became so demented he forgot his opposition to the idea and finally agreed.
Once at the nursing home he had to stop drinking. They wouldn’t let him have any alcohol. He was furious, as you might imagine, but shortly after that he forgot all about alcohol and never asked for another drink.
He was still depressed, however, and so his doctor put him on an antidepressant. Within a few weeks he was a new man. He became the sweet, loving and loveable man I’d known years before. He became tremendously contented.
He loved the staff and thanked them repeatedly when they did anything for him. And I mean anything. When the cleaning lady came in to empty his trash basket he thanked her over and over. Then he kissed her hand and told her how beautiful she was and how lucky he was to have her help.
He was also contented with his financial situation. He once told me confidentially that the American government was paying for his nursing home stay! I just let him continue thinking that.
His depression soon went away and he became a joy to be with. Everyone at the nursing home just loved him to death and he loved them as much. Once one of the young girls who worked in the kitchen asked him, “Where were you when I was looking for a husband?” He and I laughed a lot about that question.
He no longer worried about death because he didn’t have the capacity to think about the future. And he didn’t stew over any unpleasant things that happened to him because he forgot them all very promptly.
Before he moved to the nursing home he was extremely verbally aggressive with me and I didn’t know how much longer I could take it. But after he’d been there awhile our love blossomed and returned to the state it was when we’d first met 30 years earlier. He was a true joy for me, and he himself was very contented – much more so than I’d ever seen him. He knew and experienced joy even on the last day of his life.
It could be worse... as I have written before, there are alot of people in situations alot worse than mine. Moreover, while I may have been one of the unlucky ones among the 500,000 Americans who have been diagnosed with early on-set Alzheimer's (as defined by having a confirmed case and being under 65) at least I have some (undetermined) amount of lucid time left to enjoy life and know that I am... in other words, I have not exactly misplaced all my marbles yet... (okay... maybe one or two... but I have a big bag of 'em)
However to give you some understanding of how this disease can effect lives even younger than mine I refer you to a story a couple of Saturdays ago in the Arizona Republic... Dr. Flitman, the neurologist mentioned in the article, is also my doctor. Click on this link please...
Given this time of year as the Superbowl approaches, it seems appropriate that we begin this entry with a football metaphor so this post is entitled "Tackling Alzheimer"s", but the truth is that the post's title is borrowed from a recent Diane Rehm program of the same name which was broadcast on 18 January 2012. If you have the time, I urge you to listen to the hour broadcast for an update on the status of this disease and the surprising lack of priority and research funding as compared to say, to the fight on cancer, when the growth of Alzheimer's disease poses a much greater threat to America's aging population and its ever diminishing resources... please click on the blue title text below for the audio... speakers on...
Dementia is poised to become a defining disease of a rapidly aging population _ and a budget-busting one for Medicare, Medicaid and families. The Obama administration is developing the first national Alzheimer's plan to combine research aimed at fighting dementia with help for caregivers. Around the country, thousands of families are pleading for changes to improve early diagnosis and help keep loved ones at home instead of in nursing homes.
Alzheimer’s disease affects nearly five million Americans a year. But that number is expected to triple in coming years as our population ages. The cost of treating sufferers is also predicted to rise – to $1 trillion by 2050. For many years, Alzheimer's struggled to achieve the funding levels of more prominent diseases. And breakthroughs have been few and far in between. Now, the White House has brought together a team of experts to develop a national plan of action for the illness. Join us to discuss what the new plan will mean for sufferers, their families and the medical community.
Guests:
Robert Egge vice president of public policy at the Alzheimer’s Association
Dr. Scott Turner professor of neurology and Director of the Memory Disorders Program at Georgetown University Medical Center
Deborah Rubenstein director of consultation, care management and counseling, Iona Senior Services
Howard Koh Assistant Secretary for Health, Department of Health and Human Services
One thing I will be most grateful for before I finally slip away will be the memories of the time I spent with Elliot, our first grandchild. There's a tendency to spoil the first grandchild and we are no different... but if you watch and listen to this recent photo montage with music of Elliot, you'll understand why. Kudos and gratitude to Heather Bergen, the photographer...speakers on please... click on the song title...
Since beginning the AZ medications, I sleep fitfully and wake often. But I dream often and vividly about all sorts of topics... some I can remember and some I cannot. But as we all know, as this disease progress, we become more divorced from reality and more insular within our dreams...but is this what remains inside the mind when we completely leave reality?
This week's local news included word that Bill Heywood and his wife Susan, had committed suicide in a local Scottsdale motel. Mr. Heywood was a long time and beloved radio personality and his wife was, at one time a successful business person, very active in local charities, including helping to save many homeless animals. After Mr. Heywood's radio career ended, he became active in real estate. The economic downturn had its effects on him as it has on many others. Susan became very ill. Apparently they both began to believe that life together on the Other Side was better than continuing to challenge life on this side...
Then yesterday, one of my step-sons came with news that one his young female friends, a woman who had been a room-mate at one time, had also also committed suicide this week. She had been depressed. I could tell this was especially sad for him for he has lost several close friends in this way in the last few years. Who can ever explain the WHY of these actions?
Having served in the military a long time, I have seen my share of death and its effects on the survivors. One duty I dreaded the most was having to serve as a "Casualty Notification Officer". The one case that still haunts me the most was having to tell a young mother at 6 AM that her husband was dead. Her standing there in her front door in her robe, crying, with a three year old girl clinging to her side, is a vision I still carry with me.
My military training, like that of police officers, firemen, and EMS people, taught me that the best way to deal with such bad news is with stoicism. If I can maintain my outward self control and inner strength, I can press through this crisis with a minimal amount of emotional pain.
This lack of open ability to share feelings openly has been a problem at times with Mindy and with others. It's not that I am not sharing their pain or not hurting from some painful disagreements or passages, it's just that I am conditioned to contain those feelings. It's a fault that sometimes prevents me from showing the real feelings in my heart to others who care about me.
Suicide is, in fact, VERY painful... perhaps not so much for those who chose this path, but especially for those left behind. They is always that question of WHY? Why did they do that?Sometimes they leave a note to try and explain their motives, sometimes not. Either way, it usually makes it no less difficult for those left behind to understand.
Considering the incurable course of my own disease, I would be dishonest to say that I have not considered it in order to relieve my family and society of the inevitable burden I will become. But I hope I still have several more years to see the sun rise and set (and to understand that it IS rising or setting...), so it is not an option I hold close. At the same, I wish society and the medical world were more open to allowing people like me, or those with incurable diseases to create an "exit directive" when certain mutually agreed upon criteria are met... but that is currently not our way unfortunately.
I sometimes joke with Mindy that when my mind is nearly lost, ...when I cannot remember anyone or anything, then that would be the day to "pull the trigger" sort to speak. She reminds me that it is more likely that when that day arrives... I will have forgotten it.
We all hold our own lives in our own hands, what we chose to with it... is what we chose.
I'll close this thought with the theme song and the original lyrics from "Mash" the popular 1970 film. "Suicide is Painless".
Through early morning fog I see
visions of the things to be
the pains that are withheld for me
I realize and I can see...
[chorus]:
That suicide is painless
It brings on many changes
and I can take or leave it if I please.
I try to find a way to make
all our little joys relate
without that ever-present hate
but now I know that it's too late, and...
[Chorus]
The game of life is hard to play
I'm gonna lose it anyway
The losing card I'll someday lay
so this is all I have to say.
[Chorus]
The only way to win is cheat
And lay it down before I'm beat
and to another give my seat
for that's the only painless feat.
[Chorus]
MASH
The sword of time will pierce our skins
It doesn't hurt when it begins
But as it works its way on in
The pain grows stronger...watch it grin, but...
[Chorus]
A brave man once requested me
to answer questions that are key
'is it to be or not to be'
and I replied 'oh why ask me?'
'Cause suicide is painless
it brings on many changes
and I can take or leave it if I please.
...and you can do the same thing if you choose.
I wish people were better educated about early stage ad. Denial is part of it. Defensive, angry behavior is part of it. I realize that people are trying to be kind to Ed when they tell him he seems the same. But really his AD already shows up in the brain with an MRI. I can over hear him talking and not getting things 100 percent. The doctor says it is not uncommon at this stage for a patient to wipe away their entire savings by lack of judgement. One of my clients father in the early stages thought her mother was having an affair and was insufferable with her, until the brain began to turn off. I think since I have only been married a short time to Ed that it makes this harder. We don't have the history and the years behind us for a strong foundation. It is not in my character to not step up to the plate...but I wonder what would happen to him if I didn't. I have a good support system in my family...but I wonder why all you good friends out there of Ed's haven't called me to see what is really going on. I guess most folks again do not truly understand how this beginning stage shakes out, but it makes me sad. Please educate yourselves so that Ed and I can get all the right kind of suppot we need....Melinda
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