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I Have Alzheimer’s or Another Dementia
Well I talked to Denyce at the Oklahoma Chapter yesterday and camp was a SUCCESS again this year! There were 32 teens there this year! Each year it grows, I hope someday it will become a regional program across the US. Austin did not go, he felt he had outgrown the camp, even though I thought it would have been a great support system for him, he didn't want to go.
I talked to a reporter from the Arizona Republic yesterday and he wanted my story along with how the camp came about. He was working on a story of a young woman that was 48 with EOAD and has a 9 year old daughter.
I am waiting to hear back from People Magazine as well, they spoke to me a couple of weeks ago and were very interested in the coming of the camp and my story. So you see, I guess my job isn't done yet, I am still giving hope to others that are now following in my footsteps.
Austin is off to Kansas City as of yesterday. At first I thought it was rally nice, but by noon, I was already missing him! I am glad that he went I think this will be an awesome experience for him. He will have to learn to budget his money and make his own decisions on everything for 8 days. Not only will he get the experience of learning to be a Security Guard, but hopefully he will gain alot of life knowledge as well.
As for me, well, I am fine. My church family is checking on me and picking me up for church. So, he don't have that worry while he is gone. My husband and I are still in contact and he calls and checks on me as well and said he would while Austin is away. Plus I have a friend that comes by every other day or so. So you see, God is taking care of me and my needs.
I did talk to my brother a few nights ago. He is the only one of my siblings that has tried to understand and believe that I have dementia. I thought he understood things about Pick's after going and talking to the chapter, but I now realize that he is ssssoooo clueless!!! I told him about Austin's stomach trouble and he asked me, "what does Austin have to be so stressed about?" I told him that he really didn';t understand the disease like I thought he did. I told him that he needed to come and spend a few days and nights with us and then he would know. I told him that Austin is so tired of me forgetting and constantly repeating myself ALL DAY long. He is tired of being embarassed in publice because I have lost my executive functioning and I don't realize until I hear Austin apologing on my behalf that I have done or said something wrong. I told him I could no longer cook and we eat out alot more than we should. I told him that Austin is responsible for most of the driving now and well the list goes on and on. He didn't offer any support, so I just don't know. I have learned that you dont have to be blood to be family as my church and chapter has been more of a family to me than my family.
Not forgetting you all, you have been the most supportive and caring cyberspace family that anyone could ask for. So strange I use to come here and offer words of wisdom to those that were new to this journey and now the tide has changed. I feel so lost when I see someone struggling here as I really no longer know what to say. I guess they could go into the archives and see who I use to be. I still have the knowledge and wisdom, just don't know how to express it anymore.
I do have one concern though, it really didn't bother me until I was leaving church last night. i was shaking the pastor's hand and my right leg triend to give out. He asked me if I was okay and of course I said I was fine. I am going to call my neurologsit today though as this has been happening several times a week almost daily really that it just wants to give out. Is that part of the diseae??? Johanna, I need your knowledge now. Is your leg, just one right now, having weakness and going out from under me part of it?
Well, talk to you all soon, Tracy
Well for now, this is my summer news and update. Talk again soon, Tracy
Tracy, thank you for the summer camp update. What terrific news that it had another successful year. The impact on these 32 teens must give you a real boost to remember the help and hope you have given to many and continue to give.
We as a community do remember what you have accomplished. As we attempt to "be there" for you with "peer help" and understanding, we stay mindful of your help.
Just understand that it is often we don't know how to respond when we hear that are experiencing frustrations and challenges. You stated you no longer know quite what to express to newcomers. It's hard for all of us with executive function difficulties.
Many times I find myself just reading different posts and not having a clue how to organize and post my response. hence, you don't see as many posts from me!
It's always hard to word things when you want to make sure you dont offend someone. it's hard to come up with the right words.
I just want you to know I will continue to think of you and Austin. I'm glad you are getting some of the help you need now.
Iris, I hinted to my brother about staying with us a couple nights and he didn't jump on it. I have heard back from my neurologist and he said after reviewing my records, his opinion is it is the Pick's disease progressing in my motor skills. So, i have cried, it's easier when Austin isn't here. My neuro said there was nothing they could do for, just to be careful and let them know if it gets worse.
I have called for Lifeline and they are coming next Wednesday and will be setting me up with their system. I think it will give some security to Austin as well, knowing that I am not alone.
So, that is my accomplishmnet for the day!
You have accomplished much for the day - I am proud of you. I am SO happily, happily happily celebrating that you now will have Lifeline. Just please always wear it.
Your Neurologist has informed you of the advancing involvement of the disease that is affecting your motor skills and that is why the difficulty with your leg. This will continue to evolve over time. Tracy, I am truly sorry this is happening and how I wish it were not. My heart goes out to you and I do understand your needing to grieve this latest change.
That this has begun happening is a reminder to keep close contact with your support person at the Alzheimer's Chapter - do contact them and let them know what Neuro said and how it is affecting you. Your brother and the support people at church also need to know. If at any time you wish for your brother or other significant person in your life to make an appointment with the Consultant at the Association so they can learn much more in able for them to help with future plans, this is also an option you can choose if you wish to do so.
This change in condition is a bit of a hint that you will want to continue to confirm your plans for the future for yourself and Austin as continuing FTD changes require a different and safer living situation with more help. You do not need this yet, but making that future plan and actually taking steps to confirm all of the plans that would need to be made and to know that it is actually possible will give you much power for the future.
May you continue to find the support you and Austin so well deserve and you will continue to have the support of your friends here.
With a great soft hug and my very, very best wishes,
You may think you don't know what to say but you express yourself very well. I can feel every emotion.
I'm so happy that the summer camp went well. This may be your legacy.
May God continue to bless you in the way that you feel His presence.
Just want to stop by and tell you how I am touched by your story, your strength and your courage. Austin is a very special young man and I wish him only the best as he continues to mature and find his way in this world. He can certainly be proud of all his mom has accomplished, and you are surely proud of the person he is becoming.Hope all goes well for Austin while he is away and I am glad to hear about the Lifeline service. God bless you both! Thank you for touching his hardened heart tonight - I needed this. You are an inspiration to so many.
BTW, you said you may not be expressing yourself and your knowledge very well - Tracy, you are incredible! Your words speak volumes; you definitely have not lost that ability. Again, thank you.
It's good to hear that things are going well for you and Austin.
Congratulations on another successful summer camp.
I'm sorry to hear about your leg problem. I'm glad you have had it checked out. As Johanna said, please let everyone know what is going on.
I'm, also, so glad you got one of those help devices (sorry, I can't think of the name). It will be much safer for you. I'm sure it will help Austin too.
Please, take care of yourself and Austin.
Keep posting. You still seem to write and convey your feelings well.
Peace and Hope,
Tracy, I just wanted to express how happy I am to here about your Lifeline decision! That 's another step to assuring the safety and peace of mind for you and Austin.
So sorry for your Neuro results. You are brave and are an inspiration to many. You continue to communicate well.
Keep us posted because we care!
How are you doing? Haven't heard from you in a while.
Are you and Austin OK??
Thinking of you.