"Trying to Save June" - an Exercise in Futility, Reality and Despair!
- Published on Tuesday, 25 September 2012 14:58
- Written by Stanton O. Berg
(June's gravesite at Lakewood Cemetery in Minneapolis)
When June was first diagnosed with Alzheimer’s on 26 January of 1998, we were told in our meetings with Mayo Clinic and others that with all the research underway, a cure was expected in five (5) to ten (10) years. We were also told that the normal time from diagnosis to termination for the Alzheimer’s disease was 8 years…that there were drugs for treatment that had the effect of improving symptoms and could delay the progress…This gave me hope that June might be saved…
All of this turned out to be a terrible cruel hoax…the treatment drugs did not delay the disease a single day and the help with symptoms later proved through studies to be about 4%...while this is statistically significant it is not considered clinically significant. In addition they frequently has severe side effects. For years June suffered facial pains from taking Aricept before the cause was determind. A side effect that the manufacturer did not even list or warn about.
The research under way was actually anemic and pathetic…our Government was providing research funds through the NIH (National Institute of Health) at the rate of seven plus (7+) times more funding for AIDS than they were funding Alzheimer’s and this was in spite of Alzheimer’s being a major cause of death (now 5th leading cause of disease death) while AIDS was not even one of the 15 leading causes of death.
No one appeared to really care about Alzheimer’s during those days. Even in the present day and age, many turn a blind eye to the ongoing horror of this disease in favor of their own agenda and selfish interests.
When June died 12 years after her initial symptoms in 1997, we were no closer to a cure then we were when she was first diagnosed 1998! Oh, we have learned to diagnose more quickly and earlier but as Mayo has admitted, with no effective treatment this has limited value.
I also remember that at first I did not want to tell the world of June’s diagnosis, I did not want her to be treated differently… later my thinking was that perhaps I could somehow save her life and I busied myself first with research and later with letter writing...40+ letters to Congress, the President and Religious Leaders in an effort to stimulate funding for greater and more intensive research. I tried to get June into a Mayo Clinic vaccine trial. I pulled out all stops on utilizing the power of prayer. Eventually all proved to be exercises in futility and the cold reality and resulting despair took over. This was a disease that always came up the winner!
In those last days during the year 2008, I was often in the depths of despair as I watched a non responsive June laying with eye’s closed and in another world. I often thought of walking out onto the nearby US Highway 496 to stop traffic and demand to know why the drivers and occupants did not know what was happening just a short distance away. I thought that maybe such action would focus attention on the need for more research efforts to be directed at this horrible disease. Although I thought of this option several times, common sense finally took over and I abandoned this idea. I could see that in all probability I would end up in jail and all the public would hear about was that crazy old man out on the highway.
I am now in the grieving process and my efforts are now focused on doing what I can about promoting awareness and funding for research and saving other and future victims of this disease.
The Days of Prayer and Requests for God’s intervention
I requested and received prayers in June's behalf by the Billy Graham and Pat Robertson's organizations, our Redeemer Lutheran Pastors, and our friends in the Catholic Church. I took June to a Benny Hinn's Crusade. I remember being in prayer for June’s healing throughout the course of the evening at the Benny Hinn’s Crusade. I observed the many examples of crippled people throwing away their canes and wheel chairs and walking away but for June and Alzheimer’s there was no change. All the while I wondered why God did not intervene for one of his best servants.
As June slowly slipped further into the shadows of Alzheimer’s, I finally accepted what I knew would be the final chapter. June passed away early one morning after almost 12 years of a long and losing battle with the disease from the shadows of which no one has ever returned! The day that June left me was the 23rd of October 2008…almost exactly on that date one year before my Mother Ellen, also an Alzheimer's victim went to her heavenly home. I know that God works to bring goodness out of the evil of sickness and disease and I see evidence of his work everyday in using June’s and my experiences for the benefit of others. I see now what I did not see then!
My letter writing campaign (2006-2007) involved all the major players in our government plus leading figures in the religious landscape. This effort yielded nothing. The results were a total zero including my efforts to get June into a promising vaccine trial.
While we live in a society that has many good people, they remain largely impotent and side lined by the over whelming mass that cares little about others and their primary focus is on their own selfish interests, greed and their own personal and political agendas.
I recall reading a book by Leslie D. Weatherhead, Pastor of the City Temple in London. (1944)…he discussed the death of a man’s wife…“Your wife’s death is not the will of God…It is the fruit of human ignorance, and if we could spend as much on medical research as we spend on a battleship, your wife’s life could have been saved.”…Industrial oppression, selfish greed, the denial of God’s gifts to his own children because of the greed of the few, the horror of war…”
I agree completely with Pastor Weatherhead. In fact, if the US Government built one less aircraft carrier (We now have 11 and that number is as many as all the worlds navies in combination. Not content with that, we are building three more! If we just built one less aircraft carrier, that money would fund the research necessary to find a cure. (13+ billion dollars) How do I know this is the answer – simple! We need funding in the Billions and not in the Millions..
AIDS has proven this to be true. AIDS came on the scene just 30 years ago and by extraordinary funding of 3.5 billion yearly by our government through the NIH, the disease has quickly become a manageable one. AIDS is no longer a death sentence. On the other hand, Alzheimer’s which has been around since before the birth of Christ and with 11 times the death rate of AIDS, receives a pathetic one seventh (1/7th) the funding received by AIDS…Alzheimer’s remains a death sentence.
Below I outline the details on my efforts to save June by a Clinical Vaccine trial and later by letter writing campaigns to the President, Vice President, Congress and anyone involved in appropriations for research and the necessary funding for such research. I also wrote Letters to Religious leaders for seeking their intervention in government funding. I even wrote to the American Legion for intervention and assistance.
Alzheimer’s Vaccine Trials of 2001
In late August of 2001, the Minneapolis Star-Tribune featured an article “Mayo Clinic will test Alzheimer’s Vaccine in Humans.” This news item gave me hope that June could be saved. This was not a simple treatment of symptoms but a cure approach. I immediately completed a letter to Ronald C. Petersen, head of the Alzheimer’s Research Dept. at Mayo Clinic, formally requesting that June be a part of the clinical trials. June was already a registered patient at Mayo Clinic and also in the research department. I also requested Dr. Daniel Stein, June’s primary Doctor of Geriatrics and Internal Medicine to send a letter to Mayo recommending her inclusion on the trials. They confirmed to me that they had done so including a personal call. After not hearing anything by early December of 2001, I placed a series phone calls to Mayo. After getting the run around for two days, I finally received a recorded message that June was not one of the few chosen for the trials. When I called back I was told that they were allocated a very few trial openings and that there were a number of research centers around the country that was participating in these vaccine trials. When I asked what criteria eliminated June, the lady finally blurted out that they had only three days to review the many records and could not review them all and it was “first come first served”…after receiving this depressing call, and while standing by the phone with tears in my eyes, June walked up and asked me what was wrong…for a time I could not even talk…when I finally explained that she would not be in the trials of a vaccine for Alzheimer’s, she consoled me (I should have been consoling her) telling me “It’s alright, I will be okay.”…I am sure that we both knew she would not be okay!
Stan's Note: The vaccine (immunological) trials turned out to be a total failure. The trials were started with great expectations because the previous animal trials were said to have "shown "startling" and "dramatic" results. Mayo was one of 15 Alzheimer's research centres throughout the United States and Europe that were involved in this trial. (360 patients) Shortly after the beginning of the trial, (January 2002) some participants developed an inflammation of the brain as result of the vaccine and the trials were immediately halted. (The vaccine was identified as Na-1792 developed by Elan Corp (Dublin) and Wyeth-Ayerst Laboratories their U.S. Partner …so while it was disappointing to not be included in the vaccine trials, it turned out to be in June’s best interests in the end.
Letter Writing Campaign to the Government - 2006-2007
Over the early years of June’s Alzheimer’s, I did various letter writing efforts to members of our government in connection with funding and to religious leaders for prayers and even ran advertisements in the Minnesota state Publication of the American Legion to promote awareness and funding.
It was in the early months of 2006 and into 2007 that I made a dedicated effort to contact anyone and everyone in our Government who had anything to do with or had any control over funding. My goal was that of greatly increasing such funding. The NIH is the government arm that makes all the grants and awards of funds for research. I had put together a standard 2 page letter that outlined the problem with statics and data that I felt set forth the problem and the need for more funding for Alzheimer’s research. This was a formal letter and not an email. I sent a total of over 40 letters during this 2006-2007 effort. Only two responses were positive ones. Most did not even bother to respond. Having been taken in by the political propaganda about the kind hearted Democrats, I expected much from them and less from the Republicans...The only two positive responses however were from two Republicans who actually co-sponsored a bill to double the funding for Alzheimer's research...their efforts were bottled up in committee's and the laws were never enacted. My letter writing campaign would suggest that this is not an effective way to bring about change!
President Bush had earlier responded to one of my letters to say he was increasing the funding for “diseases that affect so many Americans, such as breast cancer.” Not a word on Alzheimer’s… President Bush's wife Laura had a father with Alzheimer's disease and who died from it! Where was Laura all this time?' Vice President Cheney responded saying that “my comments were carefully noted”.
Examples of the many people in government that received the letter in addition to President Bush and Vice President Cheney would be: Representative Nancy Pelosi, House Minority leader (No response), MN Senator Amy Klobuchar (No response), MN Representative Martin Sabo (No response), MN Representative Keith Ellison (No response), MN Representative Bill Luther (No response),Representative Ralph Regula – Sub-Committee Chair on Health and Human Services (No response), Representative Jerry Lewis - Chairman Appropriations Committee (No response), Senator Arlen Specter - Sub Committee Chair, Health and Human Services (No response), Senator Thad Cochran - Chairman Appropriations Committee (No response), Senator Harry Reid - Senate Minority Leader (No response), Representative Dennis Hastert 2006- Speaker of the House (No response), Senator Ted Stevens - Senate President Pro Tempore (No response), Representative John Boehner - House Majority Leader (No Response), Senator Bill First - Senate Majority Leader (No response),
The following responses were received: MN Senator Mark Dayton (Letter said only that he supports increased funding for NIH but ignored my specific request for Alzheimer’s.), MN Senator Paul Wellstone (Responded with letter saying he would keep my views in mind when the full senate reviewed appropriations later. Said nothing about Alzheimer’s).
Only two positive responses were received. MN Senator Norm Coleman (Promptly responded with a letter and indicated he was co-sponsoring the Alzheimer's Breakthrough Act 2007 for doubling the funding.), MN Representative Jim Ramstad (Responded with kind letter indicating his own mother had Alzheimer's. and that he supported increased funding in the past and would in the future. He later co-sponsored the Alzheimer's breakthrough bill mentioned by Senator Norm Coleman above.)
Note: The bill referred to by Coleman and Ramstad was introduced in 2007 and not acted on, re-introduced in 2009 and not enacted. These two advocates for Alzheimer’s were both lost to the cause in 2008. Senator Coleman lost his 2008 re-election bid. Representative Ramstad did not seek re-election in 2008. President Obama it turns out is as clueless as Bush In fact his funding for Alzheimer's by way of the NIH yearly budgets is even less than Bush's funding....and this is in spite of his signing the NAPA legislation on 4 January 2011 to make Alzheimer's a National priority and declaring it to be so on national TV.
Letter Writing Campaign to Religious Leaders
I sent similar detailed letters to the various religious leaders asking for their prayers and intervention in government for impact on funding. The results of this effort was also dismal and a failure. The following were my contacted efforts:
Billy Graham – The Billy Graham Evangelistic Association responded with kind letter but indicated that Mr. Graham's poor health did not permit his personal involvement at that time.
Dr. Robert A. Schuller - Crystal Cathedral Ministries in California. “Hour of Power” Sunday morning TV Ministry. (No response)
Jerry Falwell, Falwell Ministries (Responded with sympathetic letter indicating he could not spearhead any actions at that time – Pastor Falwell died shortly there after!
Pat Robertson, Christian Broadcasting Network Responded with a complimentary letter but offered nothing.
Mark Hanson, Presiding Bishop, ELCA. Responded with a polite lengthy letter that promised nothing!
Harry J. Flynn (April 2007) Archbishop of Saint Paul and Minneapolis. The Archbishop, is a gracious and kind man who blessed June at one of his visits to the Benedictine. The Archbishop responded with phone call and message suggesting the writing of a proposed letter to President Bush. He requested that I draft such a letter for his consideration. I did subsequently provide such a letter draft. Apparently no further action was taken by Archbishop Flynn before his term as Archbishop ended that December.
I even wrote to the American Legion at their national headquarters and our local State of Minnesota headquarters. My letter to the then Commander John Cox – Minnesota American Legion Headquarters received no response.
Another letter was sent to Paul Morin who was then the National Commander of the American Legion. No response was received…even our local Legion Post 303 was unable to get a response from the state or the national office. This is in spite of my being a veteran of the Korean War time period and writing to the state and national headquarters requesting assistance for a fellow veteran. Although about half of the present World War II veterans now have Alzheimer’s, they are being ignored in favor of efforts in behalf of causes that will yield the Legion greater publicity. I am convinced they are a phoney organization and have discontinued my own participation in this group even though I am a paid up for life member!
NIH (National Institute of Health) annual budgets for Funding
The NIH has provided liberal funding for many health problems (Tobacco, Obesity and AIDS) that are problems that could have been prevented by just saying “NO”. .Alzheimer’s which on the other hand can not be prevented by saying “NO”, is funded at a much lower level that can only be described as pathetic. The current 2012 NIH budget for Alzheimer’s is 498 million dollars. The current 2012 budget for HIV/AIDS is 3 billion 620 million. The current 2012 budget for Obesity is 829 million and the Tobacco research and health 2012 budget is 724 million. The NIH has a total of 233 research funding areas and many are ludicrous…The total NIH budget is over 140 billion but they cannot find even 1 billion for Alzheimer's research as the 5th leading cause of disease death. I wonder if the President and Congress ever look at this budget and take any active part in the allocations of money. I have reviewed their budgets all the way back to 2006 and all reflect the same patterns. The projected budgets for 2014 indicate no change in direction.
Beginning shortly after June's diagnosis of Alzheimer's, June and I have made monthly donations for Alzheimer's research and continue to do so now...once a year fund raisers will not do the job...we need sustained continuous fund raising in addition to greatly increased government funding before we can expect to bring this terrible disease to an end. All we have to do is to look at the AIDS story and we can see what it took to get the job done in a short time,
The Berg - Alzheimer’s - Dementia Impact to Family and Friends
While this story was the account of Stan’s failed efforts and attempts to save June’s life, this terrible group of diseases took a total of twelve (12) known family members and friends from and of the Berg family…and there may be other’s unidentified or associated with this disease group. All the deaths except one was due to the Alzheimer’s type of dementia…Al Bangert’s death was due to Lewy Body Dementia.
2000, January 8th: George J. Ott - my friend from High School Days.
2005, July 9th: Blanche Joyce McDonald-Walter – my first cousin.
2007, October 21st: Ellen Florence (Nedland)-Silbaugh – my mother.
2008, October 23rd: June K. Rolstad-Berg - my wife - the “love of my life.”
2010, November 11th: Gloria E. Anfinsen-Fox – June and my friend.
2011. December 1st: Marge Mathieu - Mother of my good friend Lin Schmidt.
2011, December 27th: Marcella (Kunesh) Ott - Wife of George Ott and my friend from high school days.
2012, March 11th: Albert Fredrich “Al” Bangert – June and my good friend.
2013, October 1st: Marie R. Mogsted-Nedland – my first cousin.
2014, September: Dolores Asproth - wife of my Redeemer Bible study friend Herman.
2014, November: Stan Berquist - my very good friend from Redeemer Bible study.
2014, November: Albert Ringerud - my good friend from Redeemer Bible study.
"And therefore never send to know for whom the bell tolls; It tolls for thee."
(1.) The top photo is June’s gravesite at Lakewood Cemetery showing a dozen violet roses in the permanent vase that is installed just ahead of the marker. This photo was taken in 2012. I personally deliver a dozen fresh roses to June’s gravesite every Wednesday around noon during the spring, summer and early fall of the year. (2.) The next lower photo is June at San Francisco in February 1998, just one month after her Alzheimer’s diagnosis. June was in the very early stage of the disease. We were attending the conference of the American Academy of Forensic Sciences. (3.) The next lower photo is one taken of June and me in our home at 6025 Gardena Lane in May of 2002 during the 5th year of June’s Alzheimer’s journey. June is still doing very well in early stages of the disease. We traveled extensively together on forensic science matters as well as personal travel. We simply made accommodations for June’s severe short term memory loss. 2002 was also our 50th wedding anniversary. Our daughter Julie put on a special party in our honor. (4.) Next lower picture was taken in November 2005 during June’s 8th year of Alzheimer’s. June was in late middle stages. June’s care required the services of an Alzheimer’s care facility. This photo was taken at the Wellstead of Rogers during June’s birthday celebration. (5.) Next lower photo was taken in October 2007 during June’s 10th year of Alzheimer’s. June was deep in the late stages of the disease and rarely opened her eyes to what would appear to her to be an alien world. June was almost totally non-responsive. It was difficult to feed her and my communications were mostly holding her hand and assuring her I loved her! These were terribly sad times! Photo taken at the Benedictine Health Care Center’s Alzheimer’s Villa. (6.) The bottom photo is one of my favorites of June. It was taken in the year 1994 at our daughter Susan’s home in Cary,North Carolina during one of our visits. This timing was four years before June’s Alzheimer’s diagnosis.
Brenda Avadian - Pearblossom, California - (25 September 2012): "Stan, I remember standing with several notables in the Alzheimer's World, including David Troxel, in Santa Barbara. We all raised our glasses to toast a cure for Alzheimer's within 5 years. Like you wrote. This was about 1999. I was so optimistic. And yet, the more we know, we realize the less we know."
Chris Souder - Portland, Oregon - (25 September 2012): "Wow , you are a true Warrior against Alzheimer's. By reading pieces of June's Journey, I have admired your undying love of her and your tireless battle. Your June was a beautiful woman. Me & my mom were part of the Bapineuzumab study that recently failed Phase 3 trials. We went into it, in January 2008, with such high hopes and now, approaching 5 years, there seems to have been no real progress. I'll continue the fight any way I can, but it is too late for my mother."
Paula Orman Hall - Memphis, Tennessee - (25 September 2012): "lI honestly believe stem cell research is the way to end this & others. I often wonder what it will take to get 'them' on the train ride?"
Alzheimer Society of Newfoundland and Labrador, Inc. - St. John's, Newfoundland and Labrador, Canada - (26 September 2012): "Alzheimer's disease can be such a heartbreaking journey, it can be full of good and bad experiences - thank you for sharing. -Amelia White, Events Coordinator"
Free-alzheimers-support.com - (15 October 2012):"Thank you, for helping us "know" June and the great love you have for her."
Gill Denman - Essex, United Kingdom - (9 October 2013): "A question I keep asking and don't get a satifactory answer to is - where does all the money go that is given to charities, research projects etc? I don't know about the States but from the limited answers i have got, a heck of a lot seems to go paying the wages bill and providing advice services which are duplicated over and over again. I do wonder why no-one seems to do a 'best value' survey of what happens to the funding which is actually given. You have done a remarkable body of work Stan, I admire you a great deal...Maybe the world needs more people who start asking questions. Unless you have actually been in close contact with a dementia sufferer you can have no idea what it is all about. We have a lovely young lady who comes in for an hour 3 times a week to help with mum, today was a very bad day for mum and the carer got to see some of what unmedicated dementia is all about, she had no idea, everyone else she sees must be medicated. She was in tears seeing the trauma of the situation, many people in the world would react the same as her. It needs positive education, too much of the symptoms of dementia are hidden from view."
Paula Coley - Pittsfield, Massachusetts - (9 October 2013): "Mr. Berg, you failed at nothing when it came to your love and devotion to June. You did everything humanly possible to save June, as I did when my precious mother was being ravaged by this horrid disease. We are facing multitudes of families facing devastation (emotionally, financially, and physically) as they attempt to provide the best possible care for their loved ones. Sadly, there is inadequate funding, support, services, and awareness of this disease. Hate is such a strong word, but I must say that I hate everything associated with Alzheimer's disease and as long as God gives me the ability to promote awareness of what this disease does to a person, I will always, always spread the word. My heart aches each and every day wishing I could have done something more to prevent my mom from the horrors, but I did everything in my power and it wasn't enough. I believe she is in Heaven resting peacefully, as is June, and my memories and the day when I can see her again in Heaven inspire me to go on. God bless you always, Mr. Berg; I so wish I could help your heart stop aching."
Brian Stjohn - Blanchester, Ohio - (9 October 2013): "Stan my heart goes out to you and your family like i said my mother has dementia and it kills me to see a shell of my mother . loosing some one is hard enouph. a terrible disease as alzheimers it takes away so much from family knowing that it ends the way it does .and theres nothing you can do but watch it break your heart. i will pray for you and ask god to help you heal . i love reading your post your wife seem to be such a great women .thanks again for sharing god bless ."
Marsha McKneely Ault - Nacogdoches, Texas - (9 October 2013): "The "No Responses" are very sad to me...(10 October 2013): " I do not agree with "Stan's failed efforts and attempts". . .You gave and are still giving all that you have to give. . . time, strength, love in finding a cure and in loving your dear wife and keeping her memory alive. . . that is NOT failure my dear, dear friend."
Janice Kennedy - Coon Rapids, Minnesota - (9 October 2013): "Stan: I know you pretty well and I know that you did everything in your power to save June. You took excellent care of her while she was still here on this earth. Someday when you join her up in Heaven, she will tell you the same things herself. In the meantime, please don't be so hard on yourself and remember that countless people care about you, including me!"
Richard Criscione - Cliffside Park, New Jersey - (10 October 2013): "My sincere condolences go out to you for all of your losses due to this horrible affliction, which literally takes a persons life ,before they actually die. You didn't lose,or fail at your objective to save June ,because she inherently knew, and saw your unending love for her, until death. It is a situation were there will be no winners, just memories ,both good and bad. I fought this adversary ,Alzheimer's,once ,with my Mom, and didn't succeed in beating it,I can't imagine the pain of seeing six loved ones succumb to it . Your continued love for them, and your faith in God ,is an example to us all, and many others, which IS a success ,and is also a gift form Him as well, so that others faced with the same dilemma,may cope better ,despite our futile attempts to save them . None of your love, and actions, are ,or will be in vain and ,hopefully ,you knowing this,will allow you ,to cope just a little better. God Bless you Stan..."
Janet Evelyn DuBois - Nashua, New Hampsire - (10 October 2013): "I still go through what ifs and if only when it comes to my Mom. I've talked to other nurses, Dr.s, and seen a family try and prolong the inevitable with IVs only to see it backfiring on them all ! We loved our love ones and they knew it...you can't stop this disease no matter how you try! Sadly enough, it can't be stopped! I'm sure you did everything in your power to make her life as peaceful and comfortable as you could! You clearly loved her!"
Dianne Creel - Concord, North Carolina - (10 October 2013): "Stan, I too traveled such a journey with my precious and loving mother as you did with June. I too, feel daily that I let her down but I genuinely know that you and I did all we could possibly do for our loved ones. You, perhaps more then me. I often wonder when all my, "if's and if only's" will ever stop spinning daily in my head? However, I do find comfort even during my personal heartbreak that God chose me to travel personal this journey with my Mother and I honestly fill like He is saying, "well done, my faithful and obedient child." Blowing~~blessings & love always your way."
Amy Stiel Almas - Waterford, Michigan - (10 October 2013): "June was truly blessed to have had you through this tragic journey."
Isabel Harper - Belfast, United Kingdom - (10 October 2013): "Keep "ranting" Stanton, raising awareness of dementia is vital. Not all care homes are bad, things are improving, here anyway. A nursing friend/colleague manages a home which specialises in dementia care and she has won awards as a result of that expertise. I'm not saying it's perfect, can be difficult when inexperienced nursing/care staff employed, education is the key."
Christine Ann Williams - Kingston-upon-Hull, United Kingdom - (10 October 2013): "Stan you did it your way.. June had great care thanks to you hold your head up high."
June first noticed a problem with her short term memory during 1997. Short term memory loss is a hallmark first symptom of Alzheimer's. In January of 1998, June was diagnosed by the University of Minnesota as being in the early stages of Alzheimer's. June's long journey into the shadows of this terrible disease ended after almost 12 years when she passed away on 23 October 2008 from Aspiration Pneumonia, a common complication of Alzheimer's. June's funeral notice as published in the Minneapolis Star in October 2008 can be seen on this website under the "In Memoriam" label - or simply Click on this link: