Letters to the Children - June's Alzheimer's - 1st Year - June - August 1998
- Published on Sunday, 16 May 2010 18:34
- Written by Stanton O. Berg
(Photo taken Christmas 1997, just one month before her diagnosis of early stage Alzheimer's by the psychology Department of the University of Minnesota.)
(First Letter - Series of letters to the Children discussing June's journey into the shadows of Alzheimer's)
20 June 1998
TO: David, Daniel, Susan and Julie:
Just a short note to communicate a medical problem in regards to Mom.
In late January, Mom (because of her concern with memory) went through a series of tests (neuropsychological evaluations) at the University of Minnesota Hospital. As you are probably aware, Mom frequently expressed concern over her memory. She has been in tears over it more than once. I had noticed it, but assured her that it was just normal and everyone had some problems with memory. I also thought that perhaps her concern just tended to magnify it in her mind.
The results were to be sent to her regular doctor (Dr. Daniel Stein – Geriatrics – Internal Medicine) for review. We had not heard anything about the results and because I think we were both afraid of the results, we didn’t push it. Dr. Stein had said nothing to us because he assumed that the University had already counseled her on the results.
Mom was in for examination in connection with her neck arthritis on Thursday the 19th with Dr. Stein. He commented about the results of the University testing in a rather abrupt manner, assuming we already knew the results. Unfortunately we did not. In any event, we were both shocked and dismayed to learn that the evaluation concluded that Mom is in the early stages of Alzheimer’s disease and that she has mild symptoms at this time.
Mom initially seemed stunned and momentarily depressed. Mom of course indicated that this was not what she wanted to hear. However, after a short time that same day, she started cracking jokes with a psychical therapist who was fitting Mom with a soft neck collar in regard to her arthritis symptoms. Mom has not discussed the subject since.
So little is known about Alzheimer’s that no predictions could be made except it say that it usually progresses over a series of several years. There is no known cure at this time. Estrogen is supposed to help slow down the progression of the disease. Mom has been taking Estrogen for at least two years. I wish she had started taking it earlier.
Editorial Notes: As the knowledge of Alzheimer’s progressed, we later learned that Estrogen is of little value in the treatment process of this disease.
In any event, I am taking this means of advising you, because I think that you as the immediate family members and Mom’s children, should know, and because I am unable to verbally discuss it calmly with you at this time.
I only ask that you be considerate of Mom and patient with her when she seems not able to recall something that you may have recently discussed with her. Her long-term memory however, seems to be good and better than mine. She frequently can recall happenings of many years ago that I need help in refreshing my memory. I would assume that if Mom wants to discuss this matter with you, she will bring up the subject in conversation. Mom does not know that I am bringing this sad news to your attention at this time.
I feel that this information, at least for the time being, should be kept confidential among the immediate family and not be passed on to the grandchildren or other relatives. Lastly, keep in mind that overall, Mom’s Alzheimer’s is only in initial/early stages and the symptoms are mild. Hopefully it will be years before any real serious symptoms surface. Meanwhile, I will be searching the internet for all new developments that may be of help. I have already downloaded some materials and forwarded to Dr. Stein for review.
Photo Note: The above photo of June was taken while June was in San Francisco, CA attending the Conference of the American Academy of Forensic Science during February 1998, just one month after her Alzheimer's diagnosis.
10 August 1998
TO: David, Daniel, Susan and Julie
As you know, in late January, Mom went through a series of tests (neuro-psychological evaluations) at the University of Minnesota Hospital. I just recently received a copy of the report from the University.
The report is dated 1/26/98. It gives the results of a series of 12 tests. They concluded, “neuro-psychological evaluation reveals grossly intact intellectual and executive abilities. Drawing constructions are fairly well preserved and fine motor dexterity is only slightly below normal levels.” They then list some abnormal findings of which the most troubling one is: “fairly severe recent memory impairment.” They then go on to conclude: “This pattern of deficits is most consistent with early stage Alzheimer’s Disease.”
They suggested referring Mom and I to the Alzheimer’s Associations for educational materials and support services. I have accordingly made their web site one of my "favorite places" and will be reviewing the site from time to time for what ever help I can find that is appropriate for our situation.
It is my opinion that most Doctors are far more reactive then they are proactive when it comes to one's medical care. With this in mind, we are on our third doctor in less then a year. The original doctor that Mom and I both used was Doctor. L...... (Internal Medicine) She was a very nice lady doctor, easy to talk to and with great bedside manner. However because of some past mistakes, I just did not trust her. From there we went to the University of Minnesota and Doctor D........ He was a part of a Senior Health Clinic. The Clinic was a dark depressing looking place........Even though I listed several tests that the State Farm Insurance Medical plan. would pay for as preventive medicine, he apparently did not think they were necessary and did not do them.
So we were off again. We finally settled on Doctor Daniel Stein (Geriatrics and Internal Medicine) as our current primary doctor. The Minneapolis/St. Paul Magazine listed him as one of the top twin cities doctors in his field. They rate the doctors once a year based on the votes of their peers. I just hope we are in the right place this time and that we have made the right judgment. He is friendly and cheerful and his offices are bright, attractive and well lighted. His staff all seem pleasant and outgoing. He seems to be very thorough in his examinations and testing and receptive to new information.
I have been sending Dr. Stein reports and information on new drugs and treatments that I have obtained from the Internet. (John Hopkins has daily reports of breaking developments. Alzheimer’s Association keeps up to date on the best treatment as well as Mayo Clinic.)
I recently sent Dr. Stein information that suggested Mom should be removed from the drug Mevacor (Lovastatin) that she had been taking for cholesterol. The Alzheimer’s Association. report of last December indicated this drug could aggravate Alzheimer’s by reducing both dexterity and attention. A study confirmed that a slight cognitive impairment could result. That is the last thing we need. Dr. Stein agreed and I promptly dumped the Mevacor pills down the drain. We replaced the Mevacor with Lipitor.
I also sent Dr. Stein a report from the Alzheimer’s Association that suggested Aricept (Donepezil) was now the best new drug for Alzheimer’s treatment. He set up an appointment for Mom and I to come in and discuss this drug.
On Thursday, 6 August 1998, we had conferences with Dr. Stein. As a result, Mom is now on Aricept. The reported side affects were restricted to about 3-5% of the population taking the drug. The side affects that were noted, for the most part, went away with continued treatment. I hope that Mom will be able to tolerate the new drug and that it will help her. Dr. Stein gave us free samples for about 1-1/2 mos. If everything goes well, Mom will continue with Aricept until something better comes along. We are to schedule a follow-up office visit with him in approx. 1 month.
Editorial Notes: Later experience and clinical trials would demonstrate that this drug Aricept, has only a modest benefit for some patients and for others it is not even appropriate. in June's case, it turned out to be a drug that caused her many facial pains that no one at the time associated with Aricept nor were the pains even listed as a side affect...A later study indicated that my research, the opinions of, Dr. Stein and the Alzheimer's Association appeared to have been misguided concerning the value of this drug. The below item is one that I published on June's website, concerning the present FDA approved drugs for Alzheimer's treatment:.
.."British Government Study on Aricept. (Published in the New York Times June 25th, 2004.). "The study paid for by Britain's National Health Service was the only large one to be done independent of the drug industry." "The most widely prescribed drug for Alzheimer's disease, Aricept, does not delay the onset of disability or the need for a nursing home, British researchers are reporting today..... The researchers say that the drug has "disappointingly little overall benefit" and is "not cost effective, and that better treatments are needed."
I think that I indicated previously, Mom is already taking vitamin E and Estrogen Therapy. These are both reported to be helpful in Alzheimer’s treatment.
Editorial Notes: The value of Vitamin E and Estrogen were also later found to have questionable value in the treatment of Alzheimer's. See articles on June's website under the Alzheimer's Drugs label. Click this link for the article on Vitamin E:
I also brought with me, copies of two of the latest developments in Alzheimer’s treatment (Reports from John Hopkins) for Dr. Stein’s review. These are not yet on the market but are drugs used in recent drug trials and studies. (Rivastigmine/ENA-713 - Galantamine)
I requested that he, Dr. Stein, look them over when he had a chance and give them some thought for possible future use. My giving the reports to the doctor made Mom a little nervous. Afterwards she said: “I couldn’t believe that you gave the doctor things to study.” I guess she was afraid Dr. Stein would be offended. At least I hope that I handled it in a manner that would not offend him.
Editorial Notes: Dr. Stein and I however, got and get along very well.- He has a good sense of humor - Later one time as we were ending a session in his office, and in the presence of an intern, he remarked to me: "That's all the instructions that I have for you"...then looking at me with a grin, he remarked: "Do you have any instructions for me?"
Mom seems to be handling all of this very well.. Maybe she is concealing much of her inner thoughts and feelings. Most of the time she seems cheerful and upbeat. The other day however, she appeared to be in a down mood. When I asked Mom what was wrong, Mom said - she felt down because she was thinking of the future and that she would probably end up in a nursing home. We both had an emotional and a tearful few minutes following that statement. I am trying to impress on Mom that we are both in this together, I will always be with her and that I will do my best to help her fight this disease.. Mom’s Alzheimer's is on my mind many times each and every day. It is always in the back of my mind waiting to spring forth at the slightest triggering thought. I know it is important to be up beat for Mom’s sake, however, it really requires my closest attention so that I do not wander astray. Mom has a heavy enough burden with out my adding to it.
My evaluation of how Mom is doing symptom wise, represents a sort of emotional roller coaster. Some days, I am depressed with indications that things are sliding backwards. Other days I am heartened by reverse indications. I am hopeful that the new medication will prove to be helpful!
The information that I have received up to this point, suggests a period of from 3 years to 20 years as a time life span of Alzheimer’s from the point of diagnosis until termination. Unfortunately the information also indicates that the average of remaining life span to be only 8 years. Mom has probably had this condition for at least 1 year before her diagnosis based on looking back of the start of the symptoms and her own expressed fears.
Editorial Notes: In July 2009, the Minneapolis Star-Tribune published the following quote: "Despite years of research, drug companies have struggled to find an effective treatment. Part of the problem, Dr. Knopman of Mayo says, is timing: Symptoms only surface 20 to 30 years after patients develop the disease. By then, it's too late" It has also been suggested, whatever the normal remaining life span would be at the point of diagnosis, Alzheimer's will cut it in half.
I am certainly open to any suggestions as to Mom’s future welfare and care.
June and Stan’s travel Log for 1998
(It was my goal to make June and my last years together and for as long as June's health would permit, very active years of no later regret - I think the reader will agree that these travel logs will demonstrate that this goal was achieved! Over the years June had developed many friends in the forensic organizations that we were a part of. Some of these friends would later be of assistance in looking after June to be sure that she was safe!)
1998: February 10-14th - San Francisco, CA – Hilton Hotel – American Academy of Forensic Science Conferences.
1998: July 13-17th – Tampa, FL – Sheraton Grand Tampa – Association of Firearms and Tool Mark Examiners conferences.
1998: July 19th-25th – Little Rock, AR – Excelsior Hotel –International Association for Identification. Conferences.
1998: September 24-25th – Bloomington, MN – Airport Holiday Inn, MN Division of the International Association for Identification conferences.
1998: September 28th-October 2nd – Toronto, Ontario – Royal York Hotel – International Association of Blood Stain Pattern Analysts conferences.
1998: December 15th-20th - Cary/Raleigh, NC - Week of visiting with our Daughter Susan and our Grandson Daniel at their home.
Photo Notes: The top photo of June was taken in Toronto, Ontario, Canada at the York Hotel in September-October 1998 during the conference of the International Association of Blood Stain Pattern Analysts. The second photo was taken at the forensic conference of the MN Division of the IAI at Bloomington, MN on September 24th, 1998. The bottom photo was taken at our home at 6025 Gardena Lane, Fridley, MN during June's 71st birthday celebration.
Final Note: On October 23rd, 2008 , June passed away after almost eleven years of an exhausting battle with Alzheimer’s. June's final three years and 8 plus months were in an Alzheimer’s facility. ( Benedictine Health Care Center of Innsbruck, New Brighton, MN.) See the article on June’s funeral notice. It is located on the top blue navigation strip under the label: “In Memoriam”. Click on: