Alzheimer’s Disease Resource Center hosted its 10th annual Alzheimer’s Disease Education Conference & Expo “Caring with a New Perspective.” today on Long Island. It featured a variety of vendors, including the Alzheimer’s Foundation of America (AFA), Dr. Pereira from Rockefeller University in Manhattan, Long Island State Veterans Home at Stony Brook University Hospital, NSLIJ at South Oaks, and The Bristal Assisted Living Community, among many others. The highlights of the day included a speech by Dr. Noggle at the New York Stem Cell Foundation (NYSCF), about his research on Alzheimer’s using stem cells. Also Barry Petersen, a well known CBS news Correspondent, spoke about his experience caring for his wife Jan Petersen, who had early onset Alzheimer’s, and his book Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s. An exclusive interview with him reveals the deep agony that comes with this disease, the warring inside oneself, and the decisions people are forced to make when the person you love no longer remembers who you are.
Dr. Noggle explained his research, and the basic thrust of what he is trying to accomplish. When speaking with him he said that the foundation is trying to figure out why current treatments do not work, and is there better ways in which we can determine if someone has, or will get Alzheimer’s. His research starts with stem cells, taking adult skin cells and “turning back the clock” so to speak, regressing them back to a stem cell state. This allows Dr. Noggle and his team to use the genetic information already present in the cell from various test subjects to determine the progression of the disease, and if there is any trend between ethnic background, family history, and other variants. This also allows them to test new treatments with human stem cells in a dish, rather than human trials. Giving a more accurate picture of toxicity, and effectiveness of new treatments.
“The Jan you see, wasn’t the Jan that died”, stated Barry Petersen, when pointing to the footage of Jan before the disease took over. “She was 87 pounds and looked older than her mother who was in her 80’s”, this is about the time when Barry Petersen had to make the decision to put his wife on morphine towards the painful end to her life. He also related how hard it was to see his wife, whom he loved so much, being put through this terrible experience, saying that as a man it was hard to deal with the fact that he couldn’t protect her from this disease, and he wished so deeply that it was him instead of her.
He related that the hardest day was when he dropped off Jan to an assisted living facility, “realizing everything was over”. When asked about ever trying to bring her back to reality so to speak, he said that it was interesting that it was brought up, relating that yes he did try to bring her back to reality at times but realized later that it would agitate her for the next few days. So he stopped attempting. Another point Mr. Petersen brought up was that “with other diseases you can see something”, and you have a team of different doctors to help. Most importantly, though, the person can make decisions for themselves. With Alzheimer’s you have to make the decision for them, wondering is this the right thing, and the guilt that comes along with that. “At what point do you make that quality of life decision?”. Something many people have to face.
Alzheimer’s is a disease with no hope, and the brave, loving caregiver’s who weather the ugly storm are to be applauded, for their courage, and for their conviction. The conference was truly a dignified way to raise awareness and be a support to those who are dealing with this terrible disease.