Thursday, May 26, 2005

The last couple of days have been somewhat busy and foggy not quite sure what all has gone on. Today we went to town and ran some errands. I got some flowers and we took the to my brother's grave for Memorial Day. It looked so empty when we got there, but after I placed my flowers it looked more serene. I explained to Austin how he would have loved his Uncle Roland as he never got the chance to meet him (he died in 1976). Then we stopped at Wally World and got Austin some summer clothes. Thanks to Mary from Tennessee, who called me yesterday. Her Mother has EOAD and is in ALF and doing well. Got an e-mail from Ken & Marge. They live in St. joe, Missouri. We meet them at the Public policy Forum. Marge is 63 and has Early Onset Alzheimer's. She is recovering after a 5 day stay in the hospital from a collapsed bowel. Allen and Austin went up to visit company from out of town. It is getting so more difficult for me to follow conversations, just not able to focus on the point. I've noticed I am becoming less talkative as I don't have much to stay. So many times my mind is a complete blank. I've always joked there was never much there, now there really isn't. I've been collecting donations for Memory Walk, I plan on seeking a couple of sponsors and building from that. Also, 10% proceeds from Young Hope and I Remember When will be donated as well. I guess that is all for now, time to watch Cold Case.
Take care & God Bless! Tracy

Monday, May 23, 2005

Austin passed, he is now in the 5th grade..................YEAH!!!! He is excited about next year as he gets his own locker, how cool! Saturday, we took him to Star Wars 111. He really enjoyed that! Rebecca, the Chapter Director, e-mailed and said that The Chapter is coordinating with County Library and going to introduce I Remember When in September, that is so cool! I think this book will touch many families with children as that is the focus. Dave (my publisher) e-mailed me the cover and it so awesome! It should be available to the market in about 4 weeks or so. My SIL and family is coming down Wednesday for a couple of days and then my other SIL from Malaysia is coming for a couple of days. It will be nice to see them both, although I am not sure I remember Kathy as it has been about 5 years since I met her. I remember she is very laid back and laughs alot. Today has been very tiring for me as Allen had an MRI of his back and I had to drive. Driving is very stressful and exhausting on the mind. Funny, I never thought that when I was only 16 and begging to get my driver's license. My head has been numb feeling this afternoon, that happens alot when I am under alot of stress. To Linda Fisher and Jan from Italy, first I would like to say thanks for sending me a comment on my journal. I am not able to respond in e-mail as I don't have your address, so you can e-mail me personally at: tiger@pcis.net and i would like to invite you both to join my online support group Dementia Rescue: www.groups.yahoo.com/group/dementiarescue
So strange, my biological family is so in denial of this disease hitting such young ages. They don't understand the process of the early stages of the disease and that it is more aggressive the earlier that a person is diagnosed. I wish I could package every person that I have met or their families of those that have already passed from the disease to them so they could see the reality of this disease. They don't live with me nor see how this disease has taken me from the once bright, intelligient and inquisitive person that I once was to this other person that has taken away my true personality, my warmth, intelligience and sometimes cold person that even I don't recognize. I have learned to deal with the loss of them and live with the inspiration, comfort and education that I am able to convey to others through all of this. As I believe there is a reason and purpose for all things that happen to us in life, I believe this is my mission.
Take care & God Bless! Tracy

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

Sunday, May 15, 2005

After the Public Policy Forum in Washington D.C. we extended our trip a few days and went to the outer banks. It is one that I don't think Austin will ever forget. When we landed at Reagan International, he got to sit in the pilot's seat. He thought this was so cool! Now he wants to be a pilot, who knows what tomorrow holds. We got caught in the middle of a storm in North Carolina. We ended up at Nags Head, 80 mile an hour winds. After the storm the next day we headed out to Pea Island. What should have been a 1 hour trip took 4 hours as the road had been closed down by sand blowing over it. We finally made it to Cape Hatteras where we stayed for a couple of days. We went and seen several lighthouses and Austin got to play in the surf. I waded in with him, he like chasing the ocean foam and then he collected seashells. Later allen was getting in the shower and turned just wrong and reinjured his back. He is looking at surgery the next couple of weeks. That is going to be kind of tough on all of us. I have lots of freinds praying for us and the power of prayer is an awesome thing!
Take care & God Bless! Tracy

Friday, May 13, 2005

Austin's first Seashell find!

Pea Island, North Carolina

A Ship out off the banks of Cape Hatteras

My Mother's Day gift was to see the Lighthouses

Wednesday, May 11, 2005

I am still recovering from our trip, it really wore me out. I finally got everything unpacked and am trying to get things back in some kind of order. The Public Policy Forum was really awesome. There is so much to say, that I will just try and summarize as I think of things over the next couple of days. We met a woman from Sedalia named Linda Fisher. It took me 3 days to realize that she was from Missouri. I just thought she was hanging around us because she really liked us! I finally told her that the day that we went to the Capitol. Her husband was diagnosed at 49 with EOAD and possible Picks Disease. He became quite a handful and spent the last 5 years in Residential Care. He just passed away a few weeks ago at 59 years old. Linda was quite an inspiration at the Capitol as she told her story as well. I think that most of what we asked for and spoke about will definitely be looked at with great respect and hopefully the funding that was asked for, for Research will be granted. I think people such as Chris, Bob, Linda and myself really made an impact. Ears and hearts were opened and education was definitely accepted on our behalf of sharing our stories. The Children's book isin the works. Dave my publisher just about has it wrapped up and it should be available in about 6 weeks. My family think I am doing this for the money. If they had any idea how much of this has actually been donated. These books both have a purpose, I think that is why it all has come together so well. It isn't the money, it is the purpose of our story and education of the disease behind it all. Well, I am getting pretty tired and have much to do. For thos of you that read my online journal and want to be apart of Dementia Rescue here is the address: www.groups.yahoo.com/group/dementiarescue

Take care & God Bless! Tracy

Tuesday, May 10, 2005

I have so much to say as we have been in Washington D.C. at the Public policy Forum. We were recieved there with much warmth and respect from all aspects of the Forum. I met so many people throughout the U.S that have been following my story through the media. I had no idea that my story had made such an impact. But that indeed is the whole purpose of this, to bring more public awareness of the Early Onset of the disease. I was on the panel Alzheimer Advocacy Across the Spectrum. There were 4 other panelists there with me. One was a judge that was just recently diagnosed at 49 and could no longer practice. As we addressed the room of about 400 advocates, loved ones and professionals including Doctors, NIH and Aides of Congress, I noticed that when we began to respond to the questions that we were asked that the whole room was a corridor of complete silence. Silence in awe that this disease can and does strike so young. As I said in response to my question, "This disease has no preference of age, race or religious beliefs. It can strike anyone at anytime." I think the validation of my testimony really opened some eyes as I told them, "I am here to speak for not only myself but for those that can no longer speak on their own behalf about this disease. I am the voice of many voices." Little did I know what an inspiration I would become to many people that were diagnosed in their 50's and 60's and felt there was nothing else to live for in their life. I was told by many that I had met this disease head on with great strength and courage. I never really looked at it that way, I was just doing my best to survive.
I have a child to be strong for as long as I can. Though the medication certainly is not a cure it has maintained me as well as many others and given us alittle more time to speak out as well as give us alittle more quality time with out families. I think they say you get about 18 months out of the Namenda, I am a 15 months. We are seeing progression as my short term memory is declining as well as perception and comprehension. I am so thankful for the time that the medicine gave me. The Early Onset Panel was quite powerful as the was a woman named Chris ?. I believe she was diagnosed at 46 and is now 49 and doing rather well with the medications. I so much wish that my biological family could have been there. It is people like them that we are trying to remove the misconception from. They think that since I am not sitting in a nursing home dreweling waiting to be fed that this is all a put on. There is no way that I can have Early Alzheimer's, write a book, have an online support group and be an advocate. What they don't see or hear is what goes on behind the scenes as I have help in what I do. I have the support of my local Chapter that is there to direct me and show me needs to be done. I have friends that have helped me in putting my books together, I have friends that help me with my support group as well. It is so easy to set behind the scenes and judge, but it is much harder standing in our shoes as most of our work is done voluntarily and from the heart. One person told me, "If they loved you less, they would understand. They love you too much and are not able to see the pain and negativity they have caused." I am not sure that i agree with that. I am thankful for the family that i have. I have so much more than that really as I have touched so many lives through all of this, I have brought families together as well as healed broken hearts that have misunderstood the disease process. I guess this is my purpose and so I will continue on. It is getting late, so I will write more tomorrow.
Take care & God Bless! Tracy