Thursday, January 28, 2010

A busy Thursday

Hi, I hope everyone is well.

Today was a busy day. I went to my EOAD support group meeting today @12n (I was late). We had a good time talking but I find many of the other declining more quickly then myself. Both a young woman and a fairly young man have been rapidly declining. This lovely young woman had a seizure after Christmas and since then she makes no sense. She uses garbled words now that most of us can't understand yet she still smiles at times and seems to enjoy the group. The guy is getting thinner and makes very little sense now. It's very sad. We have a new woman in our group who has Lewy Body Dementia. She's from up north and is very nice. We seemed to be short a few people today. I don't know what happened to them.

I love my group but sometimes it's so sad to see people you care about decline so rapidly. I know I am declining but not that dramatically and quickly. It makes me wonder, why them and not me??? Is it the meds I take or the study drug I'm on?? I don't know what it is. No One seems to know why some decline faster than others.
I feel badly for them yet grateful for me. Is that bad???

Aimee & Eric called to say they are coming here to watch the Superbowl with us! YEA!! Eric is a huge Saints fan! Of course Turtle is coming too! We've waited 43 years for the Saints to get to the Superbowl. We can't stop our excitement!!

Julie is coming in on Tuesday to stay with us for a few days. Bob will join her on Friday. Barbara isn't coming.

Linda & Michael are doing well except that I think caregiving is taking a toll on Linda. She seems a little tired and down. Michael is still adjusting to being here. Don't get me wrong, I'm thrilled they're here but just a little concerned about them.

White dog (Winston) was sick this week. Vomiting so much that I had to take him to the vet. He seems fine now. Orange cat (Simon) is sleeping on his blanket in his chair. He's doing great! I love my boys. They give me great comfort!

Well, I'm very tired. Had a busy day with my EOAD meeting, going to the grocery and getting my hair cut. Years ago, I would have laughed at that being a busy day. But, Oh how times have changed!!

Peace and Hope,


Monday, January 25, 2010

Monday Update

Hi to All,

Good news. Mom seems to be doing better. She's not walking much but she's not as weak as before. A little improvement in her appetite too.

Dad seems to be hanging in there.

Linda & Michael are fine as are Aimee & Eric & Turtle.

As for me, well, I'm not sure what's going on. I'm tired all the time! I sleep well at night yet wake-up tired, can take a long nap then go right back to sleep at night. The doctors say it's just part of the disease (Alzheimer's).

My visual/spatial problems seem to be worsening. (I only drive around my neighborhood now and sometimes that's even difficult). I think I'm overdo for my eye exam. My vision seems to be a bit worse so I think I'll set up and exam.

The SAINTS won yesterday!! Yea! Go Saints Go!!! We're heading for the Superbowl! This city is exploding with joy! We've waited 43 years for this!!! I was at a Saints party and we all went wild! It was great!!

Hope all of you are well. Thanks so much for reading and caring!

Peace and Hope,


Thursday, January 21, 2010

Wow, It's been hard!

Hi to All,

Quick update. Mom started having syncopal(fainting} episodes again. I tried getting her PCP involved but he's such an "A hole" that we finally had to call 911 and send her to the ER. I rode in the ambulance. Mom did OK but she HATES ambulances and the ER!

Of course, we were stuck in the hall of the ER for quite a while which made Mom angry!

I tried to make her feel but but was pretty unsuccessful. The ER Doc was running a lot of tests. I told Mom this was necessary to rule out a lot of things. Later, Linda came and relieved me and later they got Mom a room.

Mom stayed the night then I went up the next day to find out what was going on. Mom had become very weak again. The cardiologist was very concerned although he said her heart studies had not really worsened,

Mom is back home again, Thank God! She was weak and could not get out of bed yesterday but with help got up in her recliner today. The home health nurse came by as well as the PT.

I had a full day at the research place today. Linda was an angel.

This episode has taken a tole on the entire family especially Dad. Michael and Linda have been great!

I'm sorry I'm tired now so I'll have to stop.

Will update again soon.

Peace and Hope,


Thursday, January 14, 2010

It's Thursday already!

Hi to All,

How is everyone? I hope you all were able to watch the CBS segment on Alzheimer's. I'm always glad to get this dreadful disease in front of the public!

Well, OK, time for an update. Mom is doing a little better. She walking a bit more and this is great! Go, Mom! Her appetite is so-so. We're giving her boost again.

Dad seems kinda angry these days. I think Mom's illness is really wearing him down.

Aimee & Eric are doing fine. It's been pretty cold in Georgia. Turtle is wearing his sweater. He's so cute. lol.

Linda & Michael seem to be doing OK. (Their 4 cats are adjusting to indoor life!) They are both a great help to Mom & me.

As for me, I'm hanging in there. Ups and downs. Starting to get tired again and needing naps. My emotions are labile but more on the down side. Still doing the drug study. Next week's visit will take the entire day! Ahhhhhhhhhhhhh! But, I'll do what I have to do. Thank God for my sister, Linda. She drives me there and keeps me company! She's great!

Jamey came by for a brief visit on Monday. She and her family are fine.

Julie and Barbara came in last week with their sons. It was a little hectic but fun.

The Saints are in the playoffs this weekend. Wish us luck!

Please, take care. I'd love to hear some comments from you about the CBS Evening News Special.


Peace and Hope,


Tuesday, January 12, 2010

Tuesday Jan. 12th, 2010

Hi to All,

This is just a reminder to all of you to please watch The CBS Evening News with Katie Couric tonight. Dr. Jon LaPook is doing a story and update about Alzheimer's disease. My family and I participated in this special.

Hopefully, it will be informative and helpful.


Peace and Hope,


Wednesday, January 6, 2010

It's the first Wednesday of 2010

Hi to All,

I don't know where the time is going. Seems like yesterday was New Years!

I am sitting on my sofa with white dog and I have a few thoughts I'd like to share.

Wait, updates first. Mom's actually doing a little better. We changed a few of her meds and she seems less weak and more with it. Linda & Michael are doing fine. It's so wonderful having them here! Aimee & Eric are doing OK but have company (Eric's Dad & nephew). It's been a little stressful for them. Jamey and her family are fine. Julie and Barbara are here visiting now (they came yesterday).

I went to the shrink on Monday still complaining of depression (bouts of crying) and anger ( cursing and rageful). He decided to up my generic prozac. He told me that this rage/anger/cursing was part of my illness and that there was not much I could do about it. (that made me sad). One more thing I can't control. And, it comes out of nowhere! Once I start I can't stop! I'm so angry at times that I don't seem to care what comes out but later when my family and friends tell me what I've said I am embarrassed! I just hope and pray that I don't hurt someone's feelings. I would never want to do that.

I am still doing the drug study. It is a Lilly drug, a gamma secretase inhibitor. Supposedly, it slows down the progression of AD. I sure hope it helps.

I haven't noticed any improvement yet. Although, I may be receiving the placebo. I hope I am getting the real drug! Keep your fingers crossed!

Oh, I wanted to tell all of you that the CBS evening news with Katie Couric did an Alzheimer's story on me and my family. Dr. Jon LaPook did the interviewing. It will air on Tues. Jan. 12th @ 6:30pm est, 5:30pm cst. I'm not sure what time the evening news in shown in the west. It is usually 2 hours earlier than my time which is central time. Please, check you listings. Also, please call or e-mail you families and friends to watch. We need all the support we can get.

Unfortunately, I look old and fat but I did the story anyway so that it could be told. They said they wouldn't do the story without me and my family. It's called "Where America stands on Alzheimer's." It should be informative and bring the attention of all Americans to the plight of this terrible disease! I, also, hope it will bring in more dollars for research and give help to patients and families with this disease.

Thanks for reading, sharing and caring,

Peace and Hope,


Friday, January 1, 2010

It's 2010 !

Wow, the holidays have flown by. I can't believe it's 2010!!

Ok, here's the latest. Mom's not doing well. She's very weak and tired and has had another fainting spell (luckily, she didn't stop breathing this time).

Dad seems rather sad and kinda helpless but Michael and Linda have been wonderful! It's much easier to deal with this with them here! They have been angels and Mom needs angels. This angel is kinda pooped so it's great to have help now. It takes several of us to get Mom to the bathroom these last few days. But, what a team!! lol.

Linda cooked a great New Years Day dinner. Baked ham, cabbage, potato salad, black eyed peas. It was very good. I can't say great because I can't taste great anymore. Either my smell or my taste is going quickly. Most things taste ok but that's all. I find this very sad because being a New Orleanian I love to eat! We have some great food here. Just another loss. They keep coming and coming.

Aimee & Eric are OK but Aimee's had some health problems since they returned home and now Eric's Dad and nephew are going there tomorrow for a week! (Uninvited, I may add). He just announced that he had bought the train tickets and they were coming! Aimee was pretty upset! My poor Aims!!

I went to the Fairgounds yesterday with some old friends and that was nice. A bit confusing but nice. Last night I stayed home and watched TCM with white dog and orange cat. Nick and Nora Charles (the Thin Man movies). I love them!!

To start my year off right, Orange cat decided to Pee on my bed this morning!! AAhhhhhhh! I could have killed him. He hasn't done that in over a year. Luckily, I had my mattress cover on. But I still had all that washing to do. The 3 of us sleep in a king sized bed!

Is this a sign of what 2010 will be like????????? God, I hope not!

I hope all of you had a wonderful, safe New Years Eve and Day!

I hope and pray that 2010 is the year of The CURE!!

And, thanks to All of You for hanging in here with me. I hope it helps some of you. I know y'all help me!

Peace and Hope,