Here are three of my brothers. I have two more. Tom, the one in the chair used to be a paratrooper, a millwright, a father, a husband, a big brother to eight siblings, and my surrogate father--although he's only a decade older. Now Tom cannot walk or use the toilet without assistance. He cannot make his needs known verbally, so sometimes he acts out. My brother is a shadow of his true self. This picture was taken last fall, just a few weeks after my son and I made the ten hour drive to visit. Dick, the grey haired one pushing the wheelchair is six years older than I. He flew from the east coast so that he and Ron, the Tony Orlando double, who is four years younger than I, could make the twenty hour drive from California to Canada. We are trying to do what we can to support my sister-in-law, who has spent the last decade caring for Tom on her own. Last fall, when Tom's needs and his violent outbursts made it impossible to keep him at home, his wife did as many of us had been urging her to do--she found him placement in a care facility.
AD is in our DNA. Our maternal grandfather and two of his sons, our uncles, had the disease. Our mother and sister died too early and were not diagnosed, but I suspect they were in the early stages of AD. A maternal cousin and several other members of the family succumb to AD. The rest of us are waiting, watching for signs. Some of us pray, some of us try to think positively and get on with our lives. Some of us contribute financially and some of us try to block out the whole sad story.
AD is in the DNA of many of you, and I have some suggestions for you in the following paragraphs. On April 2, I am volunteering at the McGinty Conference in Portland, Oregon. The perk is that I can attend the conference for free. I hope to gather more knowledge about the latest research on AD so that I can share what I learn with family members and other interested parties. I'll post again on this topic later, once I have assimilated what I learned. In the meantime, please consider the following:
Dr Michael Weiner, ADNI (Alzheimer's Disease Neuroimaging Initiative) principal investigator and participant, tells us, "The biggest hurdle in Alzheimer's is finding enough volunteers for studies--like ADNI--to allow the research to continue a the pace needed to be successful against this 'silent epidemic.'" Dr. Weiner is not only a researcher, he, like me, is a volunteer participant in the study at OHSU (Oregon Health Sciences University) in Portland because he has a family member with AD. Did you hear him? THE BIGGEST HURDLE IS FINDING VOLUNTEERS FOR STUDIES. There are studies all over the country. You can use one of the websites below to find one close to you. Volunteers who come from AD families can be especially helpful in research studies.
Not all AD research studies have the same protocols or requirements. Dr. Weiner's ADNI study at OHSU is the largest and most comprehensive AD research study of its kind. ADNI 2 is now helping to identify the earliest signs of AD, when brain damage begins.
For me, there are perks to being a subject in the ADNI research project. The blood work, MRIs, CATs, lumbar punctures and other tests that are part of the ADNI study are free, and my doctor has access those records. I am also paid a small amount for each invasive test and mileage. However, the biggest perk is feeling that I am doing something to help fight this insidious disease that takes a toll on the entire family. It may be too late to do much for my brother, but this research may help others, especially those closest to me, those who share my DNA.
The following sites as reliable sources of information:
a. www.nia.nih.gov/alzheimers Alzheimer's Disease Education and Referral (ADEAR). An authoritative source of articles on AD, caregiving and research, emphasizing government-funded activities.
b. www.alz.org Alzheimer's Association. The leading non-profit organization supporting AD research and care. The web site is outstanding, with up-to-date reports on the demographics and science of AD, including risk factors, diagnosis, treatments, research and financial/legal/insurance issues.
c. www.alzforum.org The leading site for scientists working in the field with links to the huge number of AD-related research papers published in scientific journals, articles summarizing the latest developments, and various tools that support collaborative research. While much of the material is technical, it provides a fascinating look at the disease from the perspective of the research community.
Source: ADEAR Center