Interview

We chose to interview Kelly Lobe, an expert on Alzheimer's disease, to get a feel for this disease and how it relates to grid computing dealing with protien folding. She is with the Alzheimer's Association: http://www.alz.org/index.asp

2/13/2008:

Q: What is your job title and what do you do?
A: Kelly is the Outreach Coordinator for Spanish speaking individuals. She speaks both English and Spanish and works with Spanish speaking individuals with Alzheimer’s and their families, as well as working with those who speak Spanish that work at Alzheimer’s care facilities, hospice care, etc.

Q: Why did you decide to work with the Alzheimer’s Association in this field?
A: She had begun Dental School but then discovered she did not want to be a dentist. Always having been interested in working with Senior Citizens, she so decided to go to graduate school to get her degree in Gerontology. While working towards her graduate degree she was required to do an internship which happened to be with the Alzheimer’s Association, and enjoyed it so she stayed. She also has a B.A. in English from UMKC. Her original interest in pursuing her graduate degree was to work with successful aging in a healthy population, and even though they’re not healthy individuals, she does work to help people with Alzheimer’s disease live as normal a life as possible as they get older.

Q: What is it like working with with Alzheimer’s patients and their families?
A: She says that most people believe this kind of work is often overwhelming, sad, and depressing. She admits that sometimes it is, but it is also very fulfilling. Kelly feels she has learned a lot from the people she works with and seems to care a great deal for what she does.

Q: Have you ever heard of grid computing networks?
A: She had not heard of grid computing networks, but I explained to her what project we were doing and somewhat how the grid project works.

Q: What do you think about studying protein folding and protein composition in order to find a cure for diseases such as Alzheimers/ have you ever heard of studying protein misfolding in order to obtain cures?
A: She thinks she has heard of this, but in other terms. She did say she knows one thing researchers are looking at is the role of beta-amyloid proteins in Alzheimer’s disease. (http://www.fasebj.org/cgi/content/abstract/9/5/366 )

Q: Are there any new treatments that you are aware of that can slow the progression of, or lessen symptoms of, Alzheimer’s disease?
A: She said there are some exciting new possibilities to slow the progression of the Alzheimer’s that are in the 3rd phase of testing, but she does not expect them to be out by the end of this year. Also, there is some testing being done on the effects of some diabetes medications that may help Alzheimer’s disease. She feels that this is a good example of how possibly curing one disease may help find a cure for another disease – for instance, curing diabetes or cancer may also help find treatments or cures for Alzheimers. Unfortunately there is not, as of yet, a “magic pill” that will cure Alzheimers, but the medications that are coming out are designed to help slow the progression and therefore let the patients live a longer, more fulfilling life.

Q: What is the average age for diagnosis; at what age do people begin to show signs?
A: The average age of symptom onset is 65 years old. However, there are 5 million people known to have the disease 10% of which are under 65. Those afflicted under 65 have early onset Alzheimer’s disease.

Q: What misconceptions exist about Alzheimer’s?
A: She said there are many misconceptions about Alzheimer’s and it is hard to know where to start. She said the biggest and most problematic, in her opinion, are that having Alzheimer’s means the individual is helpless, that the individual is incapable of feeling joy or being joyous, that all with Alzheimer’s patients are mean and irritable, and she stressed that Alzheimer’s patients DO NOT forget how to love. They still have feelings and are still people, often times the individual is simply trapped behind the disease.

Q: Is there any evidence that Alzheimer’s is a hereditary disease?
A: Family history does matter and can play a factor, but just because a relative has the disease does not guarantee that you will have the disease. However, the younger a person’s age at the onset of symptoms the greater the chance that offspring will develop the disease. Basically… “sometimes yes and sometimes no”.

Q: Where and how do researchers even begin to search for a cure?
A: She said there are many places to begin. For one, begin with the biology of aging – decide what is normal for aging and what is abnormal. Many still believe memory loss is a normal part of aging but that’s not true. Also, look at the role the environment plays on the disease and what manageable elements, (such as diet, etc.), there are in the environments. Advancements in healthcare and diagnostics also play a role. Obviously, those with health care are more likely be diagnosed with a problem than those who have no access to healthcare and must simply live with the symptoms. Finally, advancements in technology could play a huge role in developing a cure.

Q: Have there been any advancements toward a cure? What are they?
A: As previously stated, medications may lead to a cure. Also, there have been many advances in diagnostic tools such as CT scans, PET scans, etc.

Q: Do you think the study of evolution is important in your field? If so how or why?
A: Yes, in the sense of humans adapting to a changing trends in the world. For instance, the conditions and environment of the world are different today then they were when the first person was diagnosed with this disease. Also, she feels that since in a way all life is connected, then if a discovery is made in another species it may be beneficial to helping us make advancements toward a cure in our species.

Q: Do you have any interesting stories?
A: She said she had many interesting stories, but it was hard to pick just a few. She chose to tell me about this new program that they have at the Alzheimer’s Association called Project Lifesaver. Alzheimer’s patients are prone to wandering, so this project uses tracking devices that can be activated if a person goes missing in order to find them. They are not used for monitoring around the clock as spying devices, but they do dramatically cut down the time it takes to find a wandering individual. Without the device it takes on average 9 hours to find a missing person, but with the device it normally takes only about 20 minutes. She really supports and promotes this program because it is so critical to find individuals quickly to ensure they are safe. Kelly is also a trained rescue and recovery worker.
There is another program called Memories in the Making that is an art program designed to dispel misconceptions about Alzheimers disease. It keeps people connected and active and requires no artistic talent. The patients make pictures of whatever they decide. Often the pictures are past memories that show that the individuals long term memory is still very keen, they just have problems with short term memory. She said there was one person who had been either a veterinarian or taxidermist and he began drawing these very detailed and beautiful pictures of animals. Each spring they have an auction to sell some of the better art which helps support the foundation and the search for a cure.

Q: What do you think is the best way that average people can help in the research of cures for diseases?
A: Kelly says the best way is to speak up. Talk to your own families, elected officials, etc. Get out and vote for officials who will help the cause and also vote and advocate more funding for research projects and foundations. Also, remind people that anyone can ask for help, and people don’t just have to deal with their symptoms themselves.

Q: What is the normal time frame from diagnosis to end stage disease or end of life.
A: It ranges from 2 – 20 years depending on environment, other health conditions, etc., with the average being about 8 – 10 years. Younger individuals, those with early onset Alzheimer’s, tend to deteriorate more quickly.

Q: Is any one area of the brain more affected than another from the disease?
A: The hippocampus, (short term memory), is the first part of the brain to be damaged and the disease progresses forward. The next major area to be damaged is the frontal lobe. Eventually the entire brain succumbs to damage, however. (Inside the Brain: Interactive tour of the brain and Alzheimer’s disease: http://www.alz.org/alzheimers_disease_4719.asp )

** We want to thank Kelly so much for her time!!