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

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

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