Hi to All,
Happy Holidays!
I've been a little down and out. I've been missing my Mom.
The drug company is Genetech. The drug is MABT5102A. Iv monoclonal antibodies.
So far, I'm doing OK. I did miss some doses of Namenda do to the stupid out of town pharmacy. I guess I missed about 2 1/2 weeks. Wow, it sure made a difference. I was visiting Aimee at that time. She said she was really worried about me and that I was declining. She wanted me to call my doctor. Of course, I didn't.
Luckily, once I got back on my Namenda (after about a week) I started feeling better.
Don't let anyone fool you about medications. They really work for most of US (EOAD).
My Dad is down too because he misses my Mom. They were married over 60 years.
Everyone is doing OK.
I am leaving again to visit Aimee & Sam. And Eric & Turtle. I will be spending Christmas with them. I'm soooooooooo excited. Sam's first Christmas!!
Dad, Linda & Michael will be together and hold down the fort.
I wish all of you Peace, Health and Happiness!
LCC
Wednesday, December 14, 2011
Wednesday, November 16, 2011
It's me again
Hi to all,
I think I figured out how to bookmark my blog so I can get to it easier now. I'm keeping my fingers crossed.
The drug study I'm in is they give me iv antibodies to attack the abnormal proteins in my brain that stick together and turn into plaques. They are even hoping that these antibodies will attack the proteins before they are able to cross the blood brain barrier. If so, they would never enter my brain. Isn't that great!
There are some side effects like brain edema, strokes and heart issues but so far I haven't had any of that (thank goodness). I have had headaches and some dizziness. That is a small price to pay if this works!!!
I hope everyone is healthy and doing fine.
I have another infusion then I fly to see my daughter and granddaughter!! I can't wait!! Sam is changing so much each day! Smarter, taller, bigger, stronger. I can't stand that I am missing so much!
My days go by slowly sometimes. I miss my Mom. It's almost a year now. Wow, sometimes it seems like yesterday.
Put some bug juice on white dog as he seems to be itchy again.
Thanks for all the love and support.
Peace and Hope,
LCC
I think I figured out how to bookmark my blog so I can get to it easier now. I'm keeping my fingers crossed.
The drug study I'm in is they give me iv antibodies to attack the abnormal proteins in my brain that stick together and turn into plaques. They are even hoping that these antibodies will attack the proteins before they are able to cross the blood brain barrier. If so, they would never enter my brain. Isn't that great!
There are some side effects like brain edema, strokes and heart issues but so far I haven't had any of that (thank goodness). I have had headaches and some dizziness. That is a small price to pay if this works!!!
I hope everyone is healthy and doing fine.
I have another infusion then I fly to see my daughter and granddaughter!! I can't wait!! Sam is changing so much each day! Smarter, taller, bigger, stronger. I can't stand that I am missing so much!
My days go by slowly sometimes. I miss my Mom. It's almost a year now. Wow, sometimes it seems like yesterday.
Put some bug juice on white dog as he seems to be itchy again.
Thanks for all the love and support.
Peace and Hope,
LCC
Sunday, November 13, 2011
I'm still here!
Hi to all,
Yes, I am still here and doing well. I am unable to view my last post so I don't know where to begin.
First, I forgot how to get back here to post. I've tried for several months without success. I'm not actually sure what I did to get here tonight.
As for me I am participating in a new drug study. I can't remember the same of the drug or class of drug. It is administered to me IV. The drug company requires I follow their protocol. I often have blood drawn, have EKG's and Urinalyses and MRI's done. (I am still testing the safety of this drug).
On the brighter side, I have a granddaughter. She will be a year old in January. She is beautiful, brilliant and even sometimes a little bratish. lol. She's wonderful!!!!!
Her name is Samantha. She has blue eyes, blondish, curly hair, fair complected and the sweetist smile you have ever seen.
I just love her to death! She and her Mom make me so happy. They spent a month with me about a month ago. It was heaven but I was completely exhausted!
This site is sending me a red message stating they could not contact. blogger.com so i may loose this message.
I feel I am holding my own in this war with EOAD. Yes, I have declined, but just a little.
I hope and pray all of you are well and happy.
Oh, I had to put Mom's cat(Jonsey) to sleep last week. She became very ill and could not hold anything down. My vet thought it was time. She was very old. It was very, very sad! Dad & I cried a lot!
I still have white dog but orange cat stays with my sister now. She has 4 other cats. Her husband is very sweet!
My Dad was ill for a while but is finally getting better. He had a terrible UTI and then he had problems walking. He's almost back to normal. Yea!!
He will be 90 in February!
The holidays are upon us. I will be here for Thanksgiving with Dad, Linda and Michael. I will leave for Aimee's the Monday after Thanksgiving.
Peace be with all of you,
Please, write me if you have any comments. I'd love to hear from all of you.
I will post again soon (I hope).
LCC
Yes, I am still here and doing well. I am unable to view my last post so I don't know where to begin.
First, I forgot how to get back here to post. I've tried for several months without success. I'm not actually sure what I did to get here tonight.
As for me I am participating in a new drug study. I can't remember the same of the drug or class of drug. It is administered to me IV. The drug company requires I follow their protocol. I often have blood drawn, have EKG's and Urinalyses and MRI's done. (I am still testing the safety of this drug).
On the brighter side, I have a granddaughter. She will be a year old in January. She is beautiful, brilliant and even sometimes a little bratish. lol. She's wonderful!!!!!
Her name is Samantha. She has blue eyes, blondish, curly hair, fair complected and the sweetist smile you have ever seen.
I just love her to death! She and her Mom make me so happy. They spent a month with me about a month ago. It was heaven but I was completely exhausted!
This site is sending me a red message stating they could not contact. blogger.com so i may loose this message.
I feel I am holding my own in this war with EOAD. Yes, I have declined, but just a little.
I hope and pray all of you are well and happy.
Oh, I had to put Mom's cat(Jonsey) to sleep last week. She became very ill and could not hold anything down. My vet thought it was time. She was very old. It was very, very sad! Dad & I cried a lot!
I still have white dog but orange cat stays with my sister now. She has 4 other cats. Her husband is very sweet!
My Dad was ill for a while but is finally getting better. He had a terrible UTI and then he had problems walking. He's almost back to normal. Yea!!
He will be 90 in February!
The holidays are upon us. I will be here for Thanksgiving with Dad, Linda and Michael. I will leave for Aimee's the Monday after Thanksgiving.
Peace be with all of you,
Please, write me if you have any comments. I'd love to hear from all of you.
I will post again soon (I hope).
LCC
Saturday, July 23, 2011
Saturday night!
Well, hello everyone,
I have been having trouble figuring out how to get to my blog to post. I think it's been a while since I did.
The drug study has not begun yet, so I don't know if I qualify. Oh, the waiting drives me mad!!!!!!!!!!!!!!!
My family is doing well. Aimee & Samantha are having a ball. They joined the "Little Gym" and are having a great time. Eric, however, has been very ill and has not worked for a couple of weeks. The doctors think he is suffering from a virus (high fever and chills and sleeps all the time). I sure hope he's better soon.
I miss Aimee and Sam sooooo much I feel like I could just s c r e a m!!!!!!!!!!!!
Dad is still going to PT for his back and legs. Linda and Michael are hanging in there.
I'm hanging in there, too.
Hope all of you are hanging in there too! Sometimes, it's the best you can do!
Peace and Hope,
LCC
I have been having trouble figuring out how to get to my blog to post. I think it's been a while since I did.
The drug study has not begun yet, so I don't know if I qualify. Oh, the waiting drives me mad!!!!!!!!!!!!!!!
My family is doing well. Aimee & Samantha are having a ball. They joined the "Little Gym" and are having a great time. Eric, however, has been very ill and has not worked for a couple of weeks. The doctors think he is suffering from a virus (high fever and chills and sleeps all the time). I sure hope he's better soon.
I miss Aimee and Sam sooooo much I feel like I could just s c r e a m!!!!!!!!!!!!
Dad is still going to PT for his back and legs. Linda and Michael are hanging in there.
I'm hanging in there, too.
Hope all of you are hanging in there too! Sometimes, it's the best you can do!
Peace and Hope,
LCC
Sunday, July 10, 2011
Monday, June 27, 2011
New drug study
Hi,
I was supposed to start a new drug study tomorrow but the appointment was canceled. I'm disappointed. I'd like to get the ball rolling!
Oh well, life is full of disappointments especially when you have EOAD. I try to roll with the punches but sometimes it gets difficult.
I miss my daughter and granddaughter! My life feels empty now without them. My sister received a kindle for her anniversary and now all she does is read!!!!!!!!!!
Don't get me wrong, she takes me places but doesn't have anytime to visit anymore.
I guess I'm just a little sad today.
Thanks for listening.
Peace and Hope,
LCC
I was supposed to start a new drug study tomorrow but the appointment was canceled. I'm disappointed. I'd like to get the ball rolling!
Oh well, life is full of disappointments especially when you have EOAD. I try to roll with the punches but sometimes it gets difficult.
I miss my daughter and granddaughter! My life feels empty now without them. My sister received a kindle for her anniversary and now all she does is read!!!!!!!!!!
Don't get me wrong, she takes me places but doesn't have anytime to visit anymore.
I guess I'm just a little sad today.
Thanks for listening.
Peace and Hope,
LCC
Thursday, June 23, 2011
Sad, scary feelings
Hi to all,
Lately I have been feeling more detached from things. Yes, I can still cry and scream but not much. I find I enjoy staying home more than going out.
I find it's becoming more difficult going out because of the background noise and commotion. Unfortunately, I can't do 2 things at the same time anymore. Totally, unable to multitask. It's hard to be out with more than one person and if there is a radio or music on I'm sunk. I just can't focus or hear! It's extremely annoying!
I've told some of my friends and family about this but the only ones that get it are my sister and my daughter. No one else understands.
It's so weird. Sometimes I feel like I'm doing better others I feel the decline. It's the roller coaster!!!!
Alzheimer's Disease sucks!
If you know someone who has EOAD/YOAD or just AD, please think about what I've said and try to understand and be helpful.
Thanks for listening. Any Comments?
Peace and Hope,
LCC
Lately I have been feeling more detached from things. Yes, I can still cry and scream but not much. I find I enjoy staying home more than going out.
I find it's becoming more difficult going out because of the background noise and commotion. Unfortunately, I can't do 2 things at the same time anymore. Totally, unable to multitask. It's hard to be out with more than one person and if there is a radio or music on I'm sunk. I just can't focus or hear! It's extremely annoying!
I've told some of my friends and family about this but the only ones that get it are my sister and my daughter. No one else understands.
It's so weird. Sometimes I feel like I'm doing better others I feel the decline. It's the roller coaster!!!!
Alzheimer's Disease sucks!
If you know someone who has EOAD/YOAD or just AD, please think about what I've said and try to understand and be helpful.
Thanks for listening. Any Comments?
Peace and Hope,
LCC
Friday, June 17, 2011
It's been a while
Hi to everyone,
Well, where should I start? I did go visit Aimee and Sam et al. It was a great visit. I was re-introduced to my granddaughter, Samantha. It was absolutely wonderful. She's growing so fast that I just can't believe it. She's gorgeous!
We did drive down to Florida. Met Dad, Linda and Michael there. Had a wonderful time. Got pictures of Sam putting her feet in the water (Gulf). She was adorable in her pink tutu bathing suit!!!
As for me, I'm doing OK. I have been suffering with headaches and dizziness again. I'm looking into a new drug study. The sponsor is Genetech, Inc. drug MABT5102A (crenezumab) testing efficacy and safety, Phase IIb. I am looking into the IV portion with no placebo. It is exciting yet scary. Some of the side effects are brain edema, stroke, heart attack (but so far very few and it seems to be related to a higher dose).
I hope all of you are well. If you have EOAD/YOAD you may want to look into the new study drugs coming out. If you are a caregiver you may want to inform your LO about these studies.
You can always go to www.alz.org to find what you need or click on the Message Boards and ask questions.
Drug trials are starting at the end of June. Keep your fingers crossed. A little prayer might not hurt either!
Peace and Hope,
LCC
Well, where should I start? I did go visit Aimee and Sam et al. It was a great visit. I was re-introduced to my granddaughter, Samantha. It was absolutely wonderful. She's growing so fast that I just can't believe it. She's gorgeous!
We did drive down to Florida. Met Dad, Linda and Michael there. Had a wonderful time. Got pictures of Sam putting her feet in the water (Gulf). She was adorable in her pink tutu bathing suit!!!
As for me, I'm doing OK. I have been suffering with headaches and dizziness again. I'm looking into a new drug study. The sponsor is Genetech, Inc. drug MABT5102A (crenezumab) testing efficacy and safety, Phase IIb. I am looking into the IV portion with no placebo. It is exciting yet scary. Some of the side effects are brain edema, stroke, heart attack (but so far very few and it seems to be related to a higher dose).
I hope all of you are well. If you have EOAD/YOAD you may want to look into the new study drugs coming out. If you are a caregiver you may want to inform your LO about these studies.
You can always go to www.alz.org to find what you need or click on the Message Boards and ask questions.
Drug trials are starting at the end of June. Keep your fingers crossed. A little prayer might not hurt either!
Peace and Hope,
LCC
Wednesday, May 11, 2011
OMG I'm so excited!
Hi to All,
Spent 2 days at the New Orleans Jazz and Heritage Festival. It was fun. Saw and heard some good music.
I am leaving this Thursday to fly to see Aimee, Sam, Eric and Turtle! I just can't wait!
Aimee says Samantha has grown so much. I can't wait to see her and hold her and smell her!
As for me, I'm declining. I'm even having trouble walking and keeping my balance. I just went to the doctor for my annual. I waiting to hear results of all the tests. Keep your fingers crossed!
After my 10 day visit with Aimee, we will drive to Florida to meet with Linda, Michael and Dad for a week's vacation on the beach. It's going to be great (I hope).
I won't be posting much until I come back because Aimee's computer is on the fritz again.
Peace and Hope,
LCC
Spent 2 days at the New Orleans Jazz and Heritage Festival. It was fun. Saw and heard some good music.
I am leaving this Thursday to fly to see Aimee, Sam, Eric and Turtle! I just can't wait!
Aimee says Samantha has grown so much. I can't wait to see her and hold her and smell her!
As for me, I'm declining. I'm even having trouble walking and keeping my balance. I just went to the doctor for my annual. I waiting to hear results of all the tests. Keep your fingers crossed!
After my 10 day visit with Aimee, we will drive to Florida to meet with Linda, Michael and Dad for a week's vacation on the beach. It's going to be great (I hope).
I won't be posting much until I come back because Aimee's computer is on the fritz again.
Peace and Hope,
LCC
Sunday, May 8, 2011
Mother's Day 2011
Hi to All,
Happy Mother's Day to all who are Moms.
Today is a bittersweet day for me. As you know my Mom died last November. This is my first Mother's Day without her. It is sad for me and I miss her. I have nothing planned.
On the other side, today is my daughter's First Mother's Day! That is very exciting! I am so glad for her. and, of course, very proud. I called her to wish her a Happy Mother's Day.
So, I have very mixed feelings today. I don't really know how to feel.
I guess I'll just stay home and do some PV work.
Peace and Hope,
LCC
Happy Mother's Day to all who are Moms.
Today is a bittersweet day for me. As you know my Mom died last November. This is my first Mother's Day without her. It is sad for me and I miss her. I have nothing planned.
On the other side, today is my daughter's First Mother's Day! That is very exciting! I am so glad for her. and, of course, very proud. I called her to wish her a Happy Mother's Day.
So, I have very mixed feelings today. I don't really know how to feel.
I guess I'll just stay home and do some PV work.
Peace and Hope,
LCC
Thursday, April 14, 2011
It's me, again.
Hi,
I sure hope all you gals and guys didn't give up on me!
I'm very sorry for taking sooooooooooooooo long to post again. I am an Alzheimer's idiot who couldn't remember how to get back to her own blog. Please, forgive me.
Things are going ok here. Orange cat is laying on my lap and computer as I type. White dog is sleeping on the cool floor. All is well.
Linda returned home from Aimee's last Saturday. She stayed 2 weeks with them. She had a great time and fell in love with Samantha too!
I've been very tired lately. My doctor says it's part of my disease so deal with it!
I do most times but sometimes I could just scream and rage about it, Then I just have to let it go.
Going to bed now,
Sweet Dreaams!
LCC
I sure hope all you gals and guys didn't give up on me!
I'm very sorry for taking sooooooooooooooo long to post again. I am an Alzheimer's idiot who couldn't remember how to get back to her own blog. Please, forgive me.
Things are going ok here. Orange cat is laying on my lap and computer as I type. White dog is sleeping on the cool floor. All is well.
Linda returned home from Aimee's last Saturday. She stayed 2 weeks with them. She had a great time and fell in love with Samantha too!
I've been very tired lately. My doctor says it's part of my disease so deal with it!
I do most times but sometimes I could just scream and rage about it, Then I just have to let it go.
Going to bed now,
Sweet Dreaams!
LCC
Tuesday, April 12, 2011
It's me!!
Hi to All,
Sorry it's been so long since I've blogged. I forgot how to get on and forgot passwords and such. Thanks to my wonderful computer literate sister, Linda, she has figured all this out so here I am.
Where to start, well, After Mom died things got a little rough for all of us. I spent Christmas with Aimee and Eric (Dad had Linda and Michael) so it all worked out. Not a very happy Christmas but it came and went.
I went to Georgia to spend some time with Aimee at the end of her pregnancy. Poor thing, some things didn't go so well, but I proud to say that I am a very happy grandmother to a beautiful granddaughter. Samantha Joan was born in January!!!!!
Wow, I don't remember being this happy in a very long time!
I'm back home now but I spent 10 weeks with Aimee and Sam (and Eric of course). Sam and I really connected. It's so very hard being away from her. I just can't describe the feeling of being a grandmother. It's quite wonderful!
Me, well, I'm doing OK. I'm extremely tired from my stay in Georgia but I loved every minute. I'm back to needing naps but that's OK with me.
I realize how lucky I am that God helped me stay alert and together enough to be helpful to Aimee and Sam. When Aimee couldn't do much (she had a C-section with some problems), I was able to step right in and take care of the three of them. Turtle too.
I am glad to be home to see about my Father. He developed some severe back problems while I was gone. My sister had set him up to see a pain specialist. Michael and I took him there for his injections. Unfortunately, they have helped him very little. He is set up to get more in less than a month now.
As for my Alzheimer's, well, it's still here. Am I getting worse? Yes. Is there anything I can do about it? No.
Aimee asked me not to participate in another drug study. She's afraid I'll get worse faster. So, for right now, I won't.
I've pretty much stopped driving. Gave my car to Eric. It's so weird not having a car. I've had a car since I was 15 years old. Sometimes it gets me down but then I think about how lucky I am to see and know my granddaughter and my daughter growing into a woman and a wonderful mother, I know how blessed I really am.
So, I still miss my Mom everyday but life goes on. I still do Peer Volunteer work on the AD Message Boards. I am not able to attend the forums in Washington this year but hopefully I'll be around next year and try to attend.
Unfortunately, the AD Assn down here went bust. They don't really have any programs to assist people like me or their caregivers. It's mostly fund raising now. That makes me quite sad. I really enjoyed our bi-monthly EOAD/YOAD groups. I really miss them.
Peace and Hope to you all,
LCC
Sorry it's been so long since I've blogged. I forgot how to get on and forgot passwords and such. Thanks to my wonderful computer literate sister, Linda, she has figured all this out so here I am.
Where to start, well, After Mom died things got a little rough for all of us. I spent Christmas with Aimee and Eric (Dad had Linda and Michael) so it all worked out. Not a very happy Christmas but it came and went.
I went to Georgia to spend some time with Aimee at the end of her pregnancy. Poor thing, some things didn't go so well, but I proud to say that I am a very happy grandmother to a beautiful granddaughter. Samantha Joan was born in January!!!!!
Wow, I don't remember being this happy in a very long time!
I'm back home now but I spent 10 weeks with Aimee and Sam (and Eric of course). Sam and I really connected. It's so very hard being away from her. I just can't describe the feeling of being a grandmother. It's quite wonderful!
Me, well, I'm doing OK. I'm extremely tired from my stay in Georgia but I loved every minute. I'm back to needing naps but that's OK with me.
I realize how lucky I am that God helped me stay alert and together enough to be helpful to Aimee and Sam. When Aimee couldn't do much (she had a C-section with some problems), I was able to step right in and take care of the three of them. Turtle too.
I am glad to be home to see about my Father. He developed some severe back problems while I was gone. My sister had set him up to see a pain specialist. Michael and I took him there for his injections. Unfortunately, they have helped him very little. He is set up to get more in less than a month now.
As for my Alzheimer's, well, it's still here. Am I getting worse? Yes. Is there anything I can do about it? No.
Aimee asked me not to participate in another drug study. She's afraid I'll get worse faster. So, for right now, I won't.
I've pretty much stopped driving. Gave my car to Eric. It's so weird not having a car. I've had a car since I was 15 years old. Sometimes it gets me down but then I think about how lucky I am to see and know my granddaughter and my daughter growing into a woman and a wonderful mother, I know how blessed I really am.
So, I still miss my Mom everyday but life goes on. I still do Peer Volunteer work on the AD Message Boards. I am not able to attend the forums in Washington this year but hopefully I'll be around next year and try to attend.
Unfortunately, the AD Assn down here went bust. They don't really have any programs to assist people like me or their caregivers. It's mostly fund raising now. That makes me quite sad. I really enjoyed our bi-monthly EOAD/YOAD groups. I really miss them.
Peace and Hope to you all,
LCC
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