Thursday, May 19, 2005

This has been a very busy and tiring week as I am still catching up from our trip to D.C. There alot of people with Early Onset that do alot of traveling to various conferences, I don't know how they do it. Dementia Rescue has really grown, it is at 172 members now. Mostly it is Caregivers, but that is okay. There is alot to be learned from both sides of this disease. I had a phone conversation with Dr. Bogorad from the NIH. I met her at the Public Policy Forum in D.C. She explained to me why there really isn't any research trials available for those under 50. Currently, there are over 400,000 people estimated to have Early Onset and those people are so scattered whereas the older population lives in clusters, there is no way to make it feasible for the people to get to the place that do the research trials. However, she promised me that after what she saw in Washington, by the testimonies that were given by us Younger, Early Onset she will keep in mind for something in the near future. I Rememer When is only about 4 weeks or so away from release and the Chapter is going to do the Press Release on it in coordination with the County Library. Memory Walk is coming up so I have started collecting funds for that as I have a very modest goal in mind this year. We got tickets to take Austin to see Star Wars 3 on Saturday, he is excited about that. Tomorrow is his last day of school. They have been in lockdown all week, I will be glad when it is over but am thankful for the security they have there. Everyday is bcoming more tiring with the short term memory. At times, it is almost as if it no longer exists. I do farily well staying on task as long as I am not interrupted. We have increased the exelon to the highest dose now, it really takes a toll on my stomach. I guess at this time however, the benefits outweigh the side effects. If, you are a person with dementia or a caregiver seeking support come and visit us at Dementia Rescue
www.groups.yahoo.com/group/dementiarescue
Take care & God Bless! Tracy

2 Comments:

Anonymous Anonymous said...

Hi Tracey! Just wanted you to know that I also survived Washington, DC. You and your family are such an inspiration and made quite an impression on the legislators.

We did make a difference! Shortly after I got back, I got a call from Representative Ike Skelton's office and they are supporting Alzheimer's research funding and the Ronald Reagan Bill. Isn't that fantastic news?

Hope all of you are well. I'm glad that I got to meet you. Linda

May 21, 2005 at 6:33 PM  
Blogger Jan Julian said...

Hi Tracy I just came here from the caregiver support group. My Rob has just started on 3mg twice a day and he is doubled over with sickness and stomach pain but is much brighter in himself, does anything help with your stomach gripes -take care of youerself and good luck
jani from italy

May 23, 2005 at 2:15 PM  

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