Alzheimer's Disease as it has affected Peggy
Last updated April 15, 2004
This page covers the narrative and pictures prior to August 1999.
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Our son, John, and I are the primary caregivers for my wife, Peggy, who has Alzheimer's disease. A very condensed history of events relating to Alzheimer's follows. This page will load slowly because of the 7 big pictures. So please wait.
Peggy was born on November 29, 1919 in Key West, Florida of parents of Spanish and French genealogy. She attended Catholic schools, graduating at the top of her class. We were married on July 29, 1941. We have one son, John, who was born on September 2, 1945. Peggy had pre-eclampsia and the birth had to be induced to save her life. Our son has since developed into a healthy man with no adverse effects from being born after seven and one half months instead of the normal nine months pregnancy. Peggy subsequently attended Syracuse University and graduated with high honors and is a member of the Phi Kappa Phi honor society.
This is Peggy at age 20. The picture is an oil tinted black and white picture -- color photography was a novelty and rarely done in 1940.
The picture on the left
is Peggy at age 51 in our home in Manlius, New York. We lived there from 1963 to 1974.
The picture on the right is Peggy
at age 74 in our front yard in Potomac, Maryland, taken in the summer of 1994.
1991 On several visits to our family doctor, Peggy didn't remember everything that the doctor told her.
1992-1993 . Peggy said that she had little recollection of what the doctor said. He was treating her for nervousness, prescribing Valium or Ativan. I noticed that she forgot some recent events, and I was greatly concerned about her memory.
Jan. 1994. I took Peggy to Johns Hopkins Hospital in Baltimore because I became completely dissatisfied with what I considered inadequate medical care from our local doctor who was treating her for hypoglycemia (that she did not have) and anxiety. He claimed that memory problems were related to anxiety. At Johns Hopkins all of her physical signs were within normal values, but the doctor, Dr. George Sack recommended the she be evaluated by the Neuropsychiatric and Memory Group at Johns Hopkins.
April 1994. After an extensive battery of tests, Peggy was diagnosed as "probable Alzheimer's Disease". Her Mini Memory Status Exam (MMSE) score was 26/30. Tests included an EEG of the brain, and an MRI, all of which were normal for a person of Peggy's age. Peggy still appeared completely normal in all social situations and still functioned normally in all activities such as dressing, house work, and travel. However, the battery of tests at Johns Hopkins led her to believe that I was poisoning her since she thought that a question asked by one of the doctors indicated that there was "poison in her blood." Of course no such condition was true. It took several months for her to get over that idea. A vacation trip to Costa Rica was normal. Mellaril, 10mg. was prescribed.
September 1994. Peggy was taking Cognex, 10mg. 4 times a day with no apparent side effects. Liver function was checked every week. Her MMSE had declined to 17/30. Mellaril was discontinued and Risperdal was started.
December 1994. Peggy's MMSE had improved to 20/30, and the Cognex had been increased to 30 mg. 4 times per day on Dec. 21. On December 28, she vomited several times, probably due to side effects from Cognex at that dosage. Liver function continued to be normal. Benadryl, 25 mg. twice a day was taken to relieve nervousness.
January 1995. We, Peggy, our son John, and I took a cruise aboard the Royal Princess from San Juan, Puerto Rico to Acapulco, Mexico which was thoroughly enjoyed by all three of us. Cognex was increased to 40 mg. 4 times per day. Risperdal caused some semi-permanent nervous anomalies, such as twitching of her legs. So one must be careful when using Risperdal.
April 1995. Took Peggy to the Emergency Room on April 4 since she had vomited blood. Upper endoscopy examination revealed 4 very small ulcers that were attributed to the aspirin that she was taking as a blood thinner. Aspirin was discontinued and no recurrence of vomiting blood has occurred. Pepcid, 20 mg. twice a day was prescribed for one month. Cognex was continued at 40 mg. 4 times per day. On April 12 while on a short cruise to the Bahamas, Peggy vomited about 4 hours after eating lunch. She had not been eating well, complaining of no appetite that I attributed to a side effect of Cognex. I reduced Cognex to two per day. On April 18 she had a cataract removed and an interocular lens implanted. She has completely recovered from the surgery and vision is excellent with the new lens. At the end of April, Cognex was increased to 4 per day.
August 1995. We discontinued Cognex about two weeks ago since Peggy has no appetite and has lost about 10 pounds in the last 3 months. We had decreased Cognex to 2 per day in June, but still she did not want to eat and was bothered by nausea and vomiting.
September 1995 We started Cognex again, this time at 20 mg. 3 times per day. MMSE score had improved so Dr. Pearlson of the Neuropsychiatric and Memory Group requested that Peggy appear at a "rounds" presentation that he will give in October, showing the effects of Alzheimer's Disease to other doctors at Johns Hopkins and displaying the benefits in MMSE that have occurred with Cognex. Peggy tolerated the questioning reasonably well but would participate only if I stood with her on the stage.
December 1995-August 1996. Cognex was discontinued when nausea and vomiting became intolerable. After a few weeks rest from Cognex it would be re-started at low dosage and gradually increased until vomiting returned, when it was stopped or reduced again. Liver function still remains within normal limits throughout this time period.
September 15 1996. Peggy was admitted to the Naval Hospital, Bethesda, Maryland with Facial Cellulitis on the left side of her face. At that time she was taking Cognex at 20 mg. 4 times per day. She was treated via IV with vancomycin for 3 days and switched to Vantin taken orally, 200 mg. twice a day and discharged to home on Sept. 18. The facial swelling and redness had been corrected, but the left side of her face was very tender to touch. Amitryptilene was prescribed to help relieve the facial pain.
December 1996. Cognex was discontinued since it still caused nausea and vomiting, and MMSE had deteriorated to 10. We anxiously await approval for Aricept.
February 1997. Aricept was started at 5 mg. at bedtime. No observable side effects. Appetite has returned and Peggy is gaining weight.
March 1997. Aricept was increased to 10 mg. at bedtime. No observable side effects. Vitamin E at 1000 mg. per day was started. Sometime during the summer of 1997, ginkgo was started -- exact date not recorded. MMSE score remains stable at 10. Thankfully, no incontinence and Peggy seems to be a very happy person. She enjoys watching such programs on TV as I Love Lucy, the Munsters, etc. and enjoys going to symphony concerts at the Kennedy Center in Washington, DC.
June 1997. We took a Baltic Sea cruise aboard the Royal Princess out of Dover, England. We had taken 9 cruises since January 1995 because Peggy enjoys the nightly entertainment aboard ship, enjoys getting dressed for the formal dinners, enjoys the shore excursions, etc. Aricept continues at 10 mg. at bedtime with no observable side effects. MMSE continues at 10.
September 1997. We were interviewed at the National Institutes of Health for Peggy's possible participation in a new experimental drug. The decision was that she would not participate since she seems to be doing well on Aricept, and participation would require stopping Aricept. The test would have some patients taking the new drug and some taking placebo. I was not willing to have her take a placebo since Aricept seems to be beneficial. Of course, if we had participated we would not have known whether the pill she was taking was the new drug or a placebo.
December 1997. Another cruise -- this time aboard the Dawn Princess. MMSE continues at 10, no side effects observable from Aricept. Peggy continues on the plateau that started a year ago. Peggy's weight has increased 16 pounds from a year ago. Appetite is almost too good! But she still looks great -- not too fat.
June 1998. We took a cruise out of Barcelona, Spain aboard the Grand Princess, ending up in Istanbul, Turkey. Peggy enjoyed the cruise. Our return from Istanbul was a stressful day that Peggy tolerated as well as, or better than I did. To start with, our bus that took us from the ship to the airport, had a head-on collision with a small car in which I believe that the car driver did not survive. No one one the bus was injured. There was a long wait in line at the airport to get boarding passes. The flight to Amsterdam where we were to take a Northwest flight to Washington was uneventful. But the Northwest flight was cancelled, so we were put on KLM to Chicago with a connection to Washington via American Airlines. One bag failed to show up in Washington -- but it was delivered 3 days later. By the time we got back home, we had been up for 26 hours. It did not seem to bother Peggy, much to my amazement. It bothered me! Such are some of the problems associated with travelling.
July 1998. Peggy is still on the plateau that started 18 months ago. Is Aricept the reason? Is Vitamin E the reason? Is ginkgo the reason? Or all 3 the reason? Or would she have plateaued without any medication? We will never know, but the 3 "medications" are being continued. We are afraid to change anything. MMSE score remains at 10. The twitching of her legs that was caused by Risperdal (mentioned in the January 1995 item above) has almost completely disappeared. The facial pain resulting from the cellulitis is still present. Doctors tell me that sometimes it takes over 5 years for the damaged facial nerves to return to normal, or near normal.
The picture on the left is Peggy, age 76, on the Black Sea Cruise aboard the Island
Princess from Athens, Greece to Rome, Italy in July 1996. The
picture on the right shows, our son John J., then Peggy, and then me, John G. aboard the
Sky Princess on the cruise from Hawaii to Tahiti in 1997.
Update
as of February 16, 1999. Fortunately Peggy is a very happy
person and is still able to travel so we go on cruises as our primary
means of travel now. Our cruise total is now up to 15 cruises and we have another booked
for later this year. But we must always be with Peggy
because she would get lost without either our son John or me with her. There has been some
degradation in her mental capabilities since early 1997.
For example, she remembers the number to key in to the home security alarm only about half
of the time. Also she frequently doesn't remember
where the seat belt is in the car. But she still always remembers to push the switch
to lock the car doors after entering the car. Her social graces
are still intact. We took several short trips that she tolerated very well and
enjoyed them. We flew to Chicago to the pipe organ Extravaganza
or three days of listening to six different theatre organs played by internationally known
theatre organists including the fantastic installation at
San Fillippo in a 44,000 square foot mansion near Chicago. We also flew to Tampa to
hear Rosa Rio play the organ accompaniment to the silent film
"The Phantom of the
Opera" starring Lon Chaney. We have driven twice to Wilmington, Delaware to
listen to concerts on the famous Dickinson
High School Kimball organ. So Peggy still enjoys music. I play our Rodgers 790
organ for her (and me) almost every day and she remembers
the words and music to many of the songs popular in the 1930's through the 1950's.
She hums/sings along with the music.
She also enjoys classical music. I play some of the Bach Preludes and Fugues that
she really likes. She came from a very musical
family. Her father played the flute, clarinet and violin. One sister and one
brother had exceptionally fine singing voices.
Her physical health remains excellent. She continues on 10 mg.
Aricept at bedtime. During the day she takes a 1000 unit capsule of
Vitamin E and ginko. She walks well, is very alert concerning her surroundings, but
does not remember the month, season of
the year, what city and state she is in, what day of the week it is, or where she is, etc. The only recent health problem
was that all 3
of us contracted some stomach upset virus aboard the Norwegian Dream cruise ship out of
San Juan, Puerto Rico in January this year.
We won't go on Norwegian Cruise Line again -- not because of the virus but we like other
cruise lines better.
Her appetite continues to be excellent and she really enjoys eating.
She needs no assistance in eating, drinking or toileting.
At times she asks me to "take her home to Mama". She believes that both of
her parents, as well as all of her sisters and
brothers are alive and living at the family home in Key West. "Reality is what
one perceives to be true." Her reality is
what she remembers from her childhood. Recent memory is very fleeting --
lasting only a few minutes to perhaps an hour.
Distraction/diversion seems to be the only method of getting her to forget wanting to
"go home". Food, no matter time of
the day or night seems to be the best distraction/diversion. Ice cream, or a full
meal seems to work well.
She still recognizes me as her husband almost all of the time, and our son
John as her son almost all of the time. But even when
she does not recognize us she knows that our son and I are persons she can trust.
The first thing that she says when I wake
her up in the morning by kissing her on the forehead is that she loves me. So she
feels safe and secure. And she tells me many
times during the day that she loves me. So I still have a lot to be thankful for.
that I would always love her, would always be good and faithful to her, and that she will always be my beautiful sweetheart and wife.
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