The last few weeks the kids and I have participated in a few projects. For one we each spoke to a social worker from Hunter College who was doing research on the affects Young Onset Alzheimer's Disease has on children of a patient. We try to do what we can whether it be advocate, research, interviews etc., whatever it takes to get this disease noticed more. It is not just an old person's disease and it affects much more than just memory. It's frightening to me how many people still think Alzheimer's is "just a memory problem". So much awareness needs to be made and I do what I can.
The next project we were involved in was with a Graduate student at Columbia University journalism school. She wanted to do her "final" project on Young Onset Alzheimer's Disease. She did some research, googled it and found both our name and that of the head of the Alzheimer's Association here on Long Island. She then contacted the Association who gave us her information to see if we would be interested in talking with her. She interviewed as many people as possible, patients as well as family members, to make her story more believable and compelling. It was a pleasure to meet this French student studying in New York and we feel she will definitely do this topic justice.
I'm going to try to get to Washington DC again this year for the Advocacy Forum sponsored by the Alzheimer's Association. I felt so empowered when I went two years ago. The concerns I have in making this happen is making sure Mike will be well taken care of and of course, the cost of this two 1/2 day event. Advocating in DC is not cheap (between hotel, travel expenses and program fees) but I am going to do my best to make it happen.
Let's face it, NOTHING about this disease is easy, hence the reason I want my representatives to hear me!