I am back, now if i can just remember where i am back from

well, it has been awhile. so many thngs have changed. mainly i lose my oldest son. it has really taken me for a loop. i love him so much. the what ifs is really driving me crazy. my alzheimer's has really taken a nose dive. i try not to stress but that is a useless effort. i see him and it takes my breath away. we had gotten so close in the last few years. i lose my mother last year and the pain with losing my son is so far out there that there is no comparison. we no longer have a chapter here and i am here alone now. no more speeches, no more interviews, no more getting the word out. i feel like a redheaded step child. i keep busy sewing, crocheting, knitting, whatever it takes to keep my hands going.

What a great Thanksgiving

Wednesday before Thanksgiving I received the most wonderful news. I had been trying for months to get into a case study with a drug that stops Alzheimer's where I am at. They had to do a Cat scan Tuesday b/c I was diagnosed with vascular dementia and if this was true I could not get in the study. The results came back that I did not have vascular dementia it is all Alzheimer's. Somebody else may have been upset with that news but I was so excited I cried. For a chance to stay where I am right now and not get worse is great. Now for the drug to work. YEA! I had a wonderful Thanksgiving, up until Lynn's accident Thursday night. Oh yea, I start my first visit to the research clinic Thursday Dec 3. I am including a picture of me, Lynn, Chelsea, Angel and Susie at the 2009 Northeast Louisiana Memory Walk.

Hey ya"ll

It's been so lond since I sit down and wrote on my blog. I am hanging in there. I finished the National advisory board in July, I think, and the La. Task Force in Oct. I try to stay busy on a local level now, every chance i get. Here are 2 newspaper articles printed this month. They miss quoted Sandy about not being able to stop Alzheimer's, they left out the word not after can. Other than that I have really been trying to get the word out.
http://www.thenewsstar.com/apps/pbcs.dll/article?AID=2009911060313, http://www.thenewsstar.com/article/20091115/NEWS01/911150306/Alzheimer-s-disease-touches-many.

Sal at www.whimsydoodlegraphics.com has some new purple ribbons for those of you that machine embroidry, so stop by and look around. I really have been pushing other companies to remember us next year for National Alzheimer's Awareness Month.

Till later. Hug someone you love. Sue

National Alzheimer's Awareness Month

http://www.youtube.com/watch?v=nf6PEuLvJxw
I am so proud to be a part of this. Sue

Life

Well, it's been awhile since I wrote. I think about writing then I get sidetracked and forget about it. Alot has happened since my last writing about me including my Alzheimer's getting worse. I have been under alot of stress lately and the last month has proven stress is not good with Alzheimer's. My mother passes away a couple of weeks ago after a couple months of amazing the doctors by being taken off the vent and living more than a couple of hours as they predicted. My youngest son has gotten married and until a couple weeks ago refused to move out. My oldest daughter is stressed out carrying for her mother-in-law with Alzheimer's and taking care of her granddaughter, so my next to the oldest and I are taking turns caring for the baby (2 year old). I finished my year with National and we are wringing down the task force. It has to be finished to present in Sept. I am so thatnkful for the year I had the priviledge to be on National, it was very rewarding, and I have to admit the third Tues seemed strange not doing a conference call. I am trying to get in a clinical trial study. I have to keep getting involved or else I will go down even faster. I feel like I am in a race to do so many things that I do not have time to do. Oh well that is it for now. Don't forget about the memory game at the bottom of the page.

FREE $$$

I found this on the www.alzquilts.org, FREE $$$. This is a great way to help raise money for alzheimer's awareness. Please stop by and check it out. Thanks Sue

Looking my future in the eye

I am sitting with my mom in the hospital. She has Alzheimer's along with other medical problems. They did a biopsy this morning. Back to her Alzheimer's, yesterday I spent the day listening to the way I will be one day. She was so out there. One minute she knew who I was and then she thought I was her sister. My brother has been dead for years but yesterday she thought he was 21 looking for a job. Then she thought I was dead and my grandparents were in heaven watching over me. The list goes on and on. I was able to handle all of it but I worry that my kids and Jesse are not going to be able to when I get to that point. I will miss my first task force meeting tomorrow. Guess I will close for now. Hug someone and let them know you care. Sue

Good morning

Well, just wanted to say good morning and hope everyone has a good day. Life is good. I hope to have a rather quite week. Today I plan on staying close to the house. Tomorrow I plan on going and having coffee with a very lovely lady in our church, then to quilting class tomorrow night. Wed stay at home. Thurs to Baton Rouge and then Friday maybe a trip to Monroe or not. My 20 year old is coming back home Thursday. He really pushes my buttons and takes days off my life very rapidly. I have already started having my memory going down hill lately. I do not really need the tension he brings with him. But what is a mother to do. I did not mean to write a downer but I must have needed to voice my concerns. Anyway, hug someone today and let them know you care. Sue

Anonymous

Please email me at sue71435@hotmail.com

Been locked out

I've tried to get back on here a time of 2 but it would not let me in to post. We had a great time at Boogie's, youngest daughter's, outside of Dallas. All my kids where here for my birthday, except Boogie. There seems to always be one of my kids that do not show up for family events. Jesse and I started walking this morning. I am getting ready for Washington DC in March. I do not want to give out of breath on the HILL like I did last year. I want to enjoy that whole trip. Lynn, my next to the oldest daughter sent me information of where we will be staying in New York on the square. That is going to be a fun trip also. So my walking shoes are going to have to get to work. Tomorrow is our support group meeting. We did not have one in December because of the weather. Unless I can get someone else to drive me to Baton Rouge next Thursday, Jesse is going to have to take me. I have picked up a new hobby, crazy quilting. Something I can do while I am in the car or sitting in the front room with Jesse while he watches tv. I am being to get anxious when I just sit. The last few days have been a little rough. I went to the library yesterday and thought I had gotten a particular book down I wanted and left it but when I got home and started looking at the books I got I had actually checked it out. I could not remember what the book looked like. It is really getting to the point that when I go to any store and buy something and bring it home and put it somewheres I forget about buying it or doing whatever I wanted to do with it. "Out of sight out of mind." Don't let me put something in a drawer in the fridge it will rot before I find it and try to remember why I bought it in the first place. The sun is out today. No rain. Yea!!!!!! Well, for now hug someone and let them know you care. Sue

hi,

Well its been awhile. Maybe since I have finished making Christmas gifts I can get back to writing on my blog. Right now I am at my daughters in Texas for Christmas. We will be leaving tomorrow heading back home. I hope everyone had a Merry Christmas. Talk later. Sue

Work your brain

I have added a free online game for your pleasure. I believe we should work our brain and I try to keep busy. We had our 2nd state task force meeting this past Thursday. It was an eventful meeting I think. Alot of reading before our next meeting. I am going to the Dementia Training meeting in Shreveport this Thurs and Friday. I hope to get Jessie and papa and I taking her to the fair next week in Olla. Well I guess I will close for now. Hug someone and let them know you love them.

Hi

Well, I did go to Baton Rouge for our 1st task force meeting. It was just general issues discussed. We had to mail our bio in so they could decide which committee to put us on. Missy wrote mine. She did a really good job. Then I kept my 16 month old great granddaugter for a few days. Jesse was in bed with the bug so it was me and little Jessie. I have so much fun with her. She is so good. Then I took her home to rest up for the Memory Walk. I got Jesse's bug, he swears that I did not, but anyway, I got sick but was determined to do my story at the walk becasue Stacey was so depending on me. I did the speech, not the best I ever did but I got my point across by the responce I got afterwards. The picture encaptured is me speaking. I came home and got in bed. Went to the doctor Monday to get some medicine and came back home and got back in the bed. Today I am feeling a little better but nothing to sing about. I have an Alzheimer's meeting tomorrow. Me and the guys are going to lunch with Fannie. No spouses allowed. So I have to be up for that. Conference call on the 21st with National, then back to Baton Rouge on the 30th. Have a good day and may God bless you in a special way. Hug someone and let them know you care. Sue

Where to begin................

Life is so good. Jesse is going back to work slowly but surely. Hopefully that means life is going to get back to some kind of normal. I love him and he takes such good care of me but I am looking forward to us not being joined at the hips. I am so use to going and doing things by myself and we were together for over 2 months 24/7. Anyway, things are being to get busy with Alzheimer's. I went to our face to face meeting in Chicago this past Friday. It did not start out so good but it got better. Chris my 19 year old who is in national guard and was active at the time came into my room after we had gone to bed and messed my clock up so he could get up on time at a later time than I had set for me to get up and get to Monroe to catch the plane. You guessed it, we missed the plane. I had me so messed up for a couple hours. Jesse, said I was not my friendly self at that point. Anyway we were lucky enough to get our flights changed and up in the air 3 hours later. All my sightseeing that I had figured out for 2 days was shot. We got to the Hard Rock Hotel about 6:30 pm and were to be downstairs at 7:30pm to meet some of the others for supper. We had a great time visiting with other ESAG members and their family. We went to the Alzheimer's Association office and had a wonderful time meeting and game planning. I have two projects or groups that I will be working on right now. We left Friday and flew on the biggest plane I have ever seen. I got to watch a movie all the way from Chicago to Dallas on my own screen monitor. Then we met my daughter in Dallas and spent the night. I got to see my grandsons Sat morning and played the 'why' game all the way to the airport. They are so cute. Then we made it to Monroe in time to go and get a birthday present for another grandson in Pineville and head for his party. Then since I was so close to my mom which is in a nursing we decided to go and check on her since I had not seen her since the hurricanes. She has a male friend and really did not act like she cared if we were there or not so we left. Came home, emailed a wonderful lady on our LA Alzheimer's Association that nominated me for the task force to make sure our Thurs. meeting was still on. Well, it's been moved to Tues. So I guess I will rest tomorrow and then head to Baton Rouge Tues morning for my first meeting there. It is going to be busy but I am going to enjoy every minute of it. It really makes me feel needed and that I have a purpose and can do something to help others with this disease. Well, wish me luck and I hope to get better at this blog. Oh, how could I forget how I celebrated World Alzheimer's Day, I made and gave everyone in my church a purple ribbon to wear today, (about 50) then we went to Fred's and I came the cashier's one to wear and share with people today. Let's get the word out there. Talk later. Hug someone and let them know you care.

I am so blessed

Well, it has been awhile. Let's see if I can tell you what has happen since my last post. On the 16th of July we went to Shreveport (about 3 1/2 hours from my home) to get a heart cath for my husband. After sitting in the waiting room all day finally got a room around 4pm to do the heart cath the next morning because did not let the lab know we were there, even after asking several times if cath lab knew we were there. Then after cath the next day we were told he was in no shape to go home and maybe not get back safely so we had to stay so they could observe him and take him off Plavix so he could have triple bypass. Well, triple bypass happened on the July 23 with great success. In the meantime I had not received my packet from National and miss the 1st conference call while sitting in the hospital. But there will be another one this month and I will be able to make it Lord willing. Stayed another week in Shreveport after the surgery. Mine you we went prepared for a night stay and spent 2 weeks. I had great people to come to my rescue. Eating all your meals in the cafeteria gets very expensive. Lord only knows how much we spent just on food. No commentary meals there. Anyway go home and we wanted to see our great granddaughter that we had not seen since her birthday on the 5th of July. So we kept her for 4 days. Took my packet to the Alz. Ass in Monroe and filled it out and faxed it. Got a call from Ruth wanting to know if I would consider being on the Alz task force for La and was and am excited. It is a great honor to be nominated by the Alz Ass and be appointed by the Governor. As Lynn my daughter said some good things have really come out of me having Alz. I just want to make sure if there is not a cure when I kids get older they will have it easier than the ones before them. Thank you Als. Ass., thank you Ruth. Mainly thank the Lord for allowing me to be able to do this. Sue

Waiting

Well, I got my letter from National, now I am waiting for my packet. Diane a friend of mine with dementia called to say she did not get accepted. Diane I was looking forward to you teaching me how to knit socks. lol Really I was looking forward to seeing more of you and getting to know you better. Sorry. Thanks Kris for your kind words. I hope life has not got to crazy yet. Good luck with Allen's wedding. We are going to my daughters in Frisco, Texas Thursday for a few days. Its my grandson's birthday (7-13). Looking so forward to it.

Look out world here I come

Hey, okay maybe not the world but where ever I am needed. I have been chosen to be on the National Alzheimer's Advisory Board. I am excited. Stacy our director for my area in Louisiana called me with the news Wednesday. I am patiently waiting for my packet from National. Nay, I do not know what the word patient means. lol I am waiting, checking the mail everyday. I hope the first meet and greet if there is a such thing is after Jesse's heart cath on 7/21/2008. With my luck that will be the day I am suppose to be somewhere. It's been a quite summer so far but I am sure it will not be so later. I am excited about alot of things dealing with National. Get to meet new people, getting to educate others, just the whole thing about being chosen is an honor. So say a little prayer for me and my family. Pray for Jesse. He understands me better than anyone and he needs to stay well. I told him I would beat him back to life if he died on me. lol. While cleaning off my computer table I found this: Do not follow where the path may lead. Go, instead, where there is no path and leave a trail. That is what we as people with dementia of any kind are having to do. There is so much how there that people have no clue about what dementia is all about.

Quite

It has been quite this week. Stayed close to the house. With the price of gas can't hardly afford to go anywhere anymore. It takes all your money for gas anymore. At least I have a good stash of yarn and thread to keep me busy. Had our support meeting Thursday. It was good. I enjoy talking and letting who ever is there talk and get things off their chest. Sunday is father's day and I have no clue what to buy daddy. He has been so good to my kids. People that have not know us our entire marriage can't believe he is their stepdad and not their real dad. But don't let my girls hear anyone say he is not their real dad they will tell you otherwise. I have really been lucky when I was introduced to Jesse. Guess I will go. Hug someone and let them know you care. Until next time. Sue

What a week

Started out with my love and joy, Jessie, my 10 month old great grandchildren. I kept her til Tues. because her mother was admitted to hospital with the lost of the child she was carrying. Then Thurs. we headed for Alexandria for a Dementia Conference, put on by Alzheimer's Association. I was on a panel to discuss my story. That was fun and I love to let people know when they see me they are looking in the face of Alzheimer's. I am not this mean, agitated, violent person. I try to speak softly, think about my words before I speak. Do they always come out correct, no. Joyce Simand was our speaker and she was wonderful, this is her. Jesse and I went to supper afterwards getting us back home around 11pm. Then I got up took my bath and headed for Alexandria again Friday morning. The conference in itself was wonderful. I was interviewed by two television stations, KALB and KALX, that is me on the right. It's funny they ask all this information and from what I heard there was hardly any part of the interview on the news. Things like the bill we are trying to get passed. I started thinking this morning I bet they thought that is all the Association wanted interview for, it wasn't. I said so much more. Yes I did push the bill. I want to know when the time comes and I end up in the nursing home, I want to know they have been trained to take proper care of me. Well, anyway on the way home I had car trouble. Made me a little stressed, but I finally got home after several phone calls to Jesse. I was so tired but I forced myself to stay up because I knew if I went to bed I would not sleep all night. Jesse woke me with a cup of coffee at 7am. He left and back to bed I went and slept until he came back at 11:30am. That is what happens when I have to really think on my feet alot. I can handle it while its going on but crash when it is finished. My poor old brain says "please stop I need to be reintergized. Tomorrow I will be fine. All in all it was a great week. Have a good night. Hug someone and let them know you care. Sue

*******Can you get the idea I am going to have to work on this picture thing. First time I have attempted. Sure I will get better.LOL

wandering mind

I was reading Leah at ouralzheimers.com and she was talking about her my wandering while she was doing something and she would sorta bounce here and there. That is me. As long as I can concentrate on what I am doing I can finish that project BUT if I get up to do something else then what I was doing is probably shot. A simple thing as getting up going to the bathroom can change the course of what I was doing and what I will be doing after the bathroom visit. I have sooooooooooooooo many projects I have started. I keep thinking I am going to get back to them and finish them. Some I do some are still there. Even with knitting and crocheting it takes me so long to finish a project because if I start thinking about something else while I am knitting or crocheting I have to go back count, read pattern, count again maybe several times before I can get back on track. Never really thought about it until I read her blog. Well this is my insight for today. Have a nice night. Hug someone and let them know you care.
Sue