We survived out first DIAN study.
I was so nervous about going and doing the tests. Not really knowing what to expect, going somewhere new, and doing something out of the ordinary really got my nerves in a bind. But it went smoothly and we are all recuperated now.
It was an intense few days with Psychometric tests, MRI, Lumbar puncture, PET scans, and finally a clinical assessment. All the people that make this study happen were so awesome. They were so helpful with information and making sure we understood the whole process all along the way. They really made the entire experience as easy as possible for us. My sister and I had tests at different times, usually back to back, so we didn't get much sight seeing in but we got to go eat at some really great restaurants.
We got to meet Dr. Bateman, http://neuro.wustl.edu/aboutus/facultybiographies/bateman/ and got to talk with him about the drug trials they are doing. It was an honor to meet him. We also met Dr. Morris at the Knight ADRC http://alzheimer.wustl.edu/. I would recommend reading about both doctors and what they have accomplished and what they are working towards for Alzheimer's.
The progress they have made since my dad was diagnosed has been amazing. They have learned so much and are so dedicated to finding out more. It really gives me hope.
We did not do the genetic testing while we were there, that is something we can do at a local facility. As of now, I am still not doing that test, but my sister is considering it. Any children who have a parent with the confirmed mutated gene that causes dominantly inherited Alzheimer's disease can participate in the drug trials they also offer as part of the study. http://www.alzforum.org/new/detail.asp?id=3289
We go back in three years to do the same tests, but this time I will know what to expect and won't be so nervous. I am happy that we got to do this and so thankful that my sister and I got to do it together.
We are tough girls that can handle anything life throws our way and we believe that someday there will be a cure for Alzheimer's disease.
I want to thank my mom and husband for being there with us encouraging us, supporting us, and loving us every step of the way. I wouldn't want anyone else by my side. I want to also thank the rest of the family and our friends for showing their support and love. It really means a lot!
Friday, July 5, 2013
Wednesday, June 19, 2013
DIAN here we come!!
I know. I know. I keep
saying I’m going to find the time to post.
I am a very busy girl. ;)
Here is a quick update…
So my sister and I didn't go to Pittsburgh like we had
planned. Many circumstances came up and
it was just not going to work. Instead,
we will be going to St. Louis and take part in the DIAN study there. We are leaving this Sunday and will test for
three days. It is such a privilege to be
able to do this, yet a little scary too.
Several of my cousins have done this study and I am very
proud of them for doing so. There are a
bunch of us DeMoes and even though we live so far away we are still doing this
together.
For those of you that aren’t familiar with the DIAN study I
would like to tell you what we are about to do.
DIAN stands for Dominant Inherited Alzheimer Network. It is an international research partnership
of centers, which study a rare form of Alzheimer’s disease that is caused by a
gene mutation. We are doing this study
for doctors and scientists to better understand the genetically mutated form of
Alzheimer’s, which will lead to better tests and treatments. There is no cure, but they have come so far
just in the last 10 years with treatments and medication it is now possible to
slow down the progression of the disease and hopefully with continued research
and development, may eventually even stop it altogether. Because my dad had this mutated gene, my
sister and I both have a 50% chance of carrying the gene. This study will collect data and tissue from
us so researchers can determine what changes occur before and after Alzheimer’s
disease symptoms start.
On Monday we will take a psychometric test then an MRI. Tuesday we will have a lumbar puncture done
then injected with an imaging tracer for the PET scan. I know I will not be able to, but I think it
would be so cool to be able to see what they will see in my brain. I love that kind of stuff. Then on Wednesday we will do another PET
scan with a different type of tracer. Once we are finished with that we will be
coming home.
Oh, one last thought.
If anybody knows of any good restaurants or fun stuff to do in the St.
Louis area, feel free to share them with me.
Monday, February 25, 2013
Change of Plans
In my last post I said the dates were set for my sister and I to go to Pittsburgh to participate in the DIAN study. We won't be going to Pittsburgh in April. Things just don't go as easily around here as I would like. LOL
So, as of right now, we are planning on participating in the study at the University of Washington, in St. Louis MO instead of Pittsburgh. It is the exact same study, just a different location. This location is much much closer for us and more convenient for traveling.
I have been in contact with them, but no dates are set at this exact time.
I will keep you all posted.
So, as of right now, we are planning on participating in the study at the University of Washington, in St. Louis MO instead of Pittsburgh. It is the exact same study, just a different location. This location is much much closer for us and more convenient for traveling.
I have been in contact with them, but no dates are set at this exact time.
I will keep you all posted.
Sunday, January 27, 2013
Set date
The dates are set! My sister and I along with my mom and husband will be in Pittsburgh the first of April.
We will be doing the DIAN study. I have posted about DIAN in an earlier post last year sometime. We are a little nervous about the whole thing, but also happy we get to do our part in the research for EOAD.
I can't wait to post about that when we get back.
While we are there we will get to meet Niki Kapsambelis, the author that is writing a book about our family. It is called "The Good Fight". While my Aunt and some cousins were in Pittsburgh a couple of years ago she met them and was so inspired by the rareness of the disease and how positive our family is while dealing with it, that she wanted to write about us all. How wonderful! She has met many of my cousins already. I talked to her early last year and she has recently spoken with my mom about our own experiences.
It is in the publishing stages, I believe. I can't wait for the finished product.
We will be doing the DIAN study. I have posted about DIAN in an earlier post last year sometime. We are a little nervous about the whole thing, but also happy we get to do our part in the research for EOAD.
I can't wait to post about that when we get back.
While we are there we will get to meet Niki Kapsambelis, the author that is writing a book about our family. It is called "The Good Fight". While my Aunt and some cousins were in Pittsburgh a couple of years ago she met them and was so inspired by the rareness of the disease and how positive our family is while dealing with it, that she wanted to write about us all. How wonderful! She has met many of my cousins already. I talked to her early last year and she has recently spoken with my mom about our own experiences.
It is in the publishing stages, I believe. I can't wait for the finished product.
Saturday, January 12, 2013
Time to Get Back Into the Swing of It!!!
I can't believe it has been over a year since I have posted. There were multiple reasons I was unable to post, but once they got fixed there were the excuses. I have followed some of my fellow bloggers in their awareness for Alzheimer's, but have been very busy with life itself and haven't been able to keep up as much as I would like.
Over the past year two of my cousins and my aunt have passed away from Early On-Set Alzheimer's, many are still struggling, and many are still participating in the research and are raising awareness. I am so proud of them all.
I was interviewed by an author about a book she is writing about Alzheimer's, and she has spent a lot of time with family members and talked with most of us about our own experiences with the disease. I can't wait to see the finished product. ( I will post details at a later time)
My sister and I are planning on participating in the research in Pittsburgh that the DeMoe family has been doing for many years now. We are planning to go in March of this year. We are still working out the details of this, but have decided we should go together and help with this great study. That stirs up a roller coaster of emotions, but it has to be done for our future and the futures of the DeMoe family members.
I am very hopeful for the study because there are so many new discoveries and drugs they have found that weren't available when my dad was battling this disease.
I have found many groups that are helping others with Familial Early On-set that I would like to recognize, but will make a dedicated post for them. I am so grateful for the people that recognize how rare this disease is and how much support they give.
I will post again soon. I just wanted to let you all know I am back on board. It is hard to find the time these days to get away to concentrate and write but I will.
Thank you to all that have checked in and kept me going and encouraged me to continue on my journey.
Over the past year two of my cousins and my aunt have passed away from Early On-Set Alzheimer's, many are still struggling, and many are still participating in the research and are raising awareness. I am so proud of them all.
I was interviewed by an author about a book she is writing about Alzheimer's, and she has spent a lot of time with family members and talked with most of us about our own experiences with the disease. I can't wait to see the finished product. ( I will post details at a later time)
My sister and I are planning on participating in the research in Pittsburgh that the DeMoe family has been doing for many years now. We are planning to go in March of this year. We are still working out the details of this, but have decided we should go together and help with this great study. That stirs up a roller coaster of emotions, but it has to be done for our future and the futures of the DeMoe family members.
I am very hopeful for the study because there are so many new discoveries and drugs they have found that weren't available when my dad was battling this disease.
I have found many groups that are helping others with Familial Early On-set that I would like to recognize, but will make a dedicated post for them. I am so grateful for the people that recognize how rare this disease is and how much support they give.
I will post again soon. I just wanted to let you all know I am back on board. It is hard to find the time these days to get away to concentrate and write but I will.
Thank you to all that have checked in and kept me going and encouraged me to continue on my journey.
Monday, December 12, 2011
Holidays
Holidays are always hard when you have lost a loved one. I remember the first Thanksgiving and Christmas we had without my dad. He was in the nursing home and we celebrated at my house with my sister and her family. I think we had it there that year because of how weird it would have been to have it at my parent's house without my dad. We went and visited him in the nursing home after Thanksgiving, which the nursing home had set aside a day where family could come eat with their loved one. My dad was at the point that he didn't eat solid foods, if any at all, so we ate in his room with him while he lied in his bed. Wasn't really a good memorable Thanksgiving to have with him, but it was the last so I'm happy we got to spend it with him not matter what it was like.
We did have our traditional Christmas Eve at at my parents house like we do every year, but this was the first one without him there. It was weird, awkward, uncomfortable, and I know we all felt guilty to still have this family celebration without my dad present. This was our son's first holiday season so that took my mind off of the hurtful things. My heart always had that nagging feeling of hurt that my dad was supposed to be here with us enjoying the grand kids and the adult conversations, but my first child took away from that and made joy for me. I know that sounds selfish, but this is what I did in these days.
Christmas that year was the same, except I felt even worse knowing what he was doing while we were enjoying opening presents and eating. This is when I would block it out and not show any emotion what so ever. How could we carry out this annual tradition when the foundation of our traditions was lying hours away in a bed. I hate it now, and here is where my guilt comes flooding back in because I didn't do more when I could have, but I've learned from those days and know I will never do anything like this again.
The next year was when he was truly gone. We all missed him and it hurt to miss him. It really never gets better over the years, but it does in some strange way. I guess we just learn to accept it, because there isn't anything anyone can do.
I have to be thankful that I got the years I did with my dad at Christmas time, and anytime. I have this picture of him in a Christmas tree frame that goes up along with all my other decorations every year, and it will forever. He is laughing in the photo,and it brings a smile to my face with tears in my eyes, because I know he would want us to remember him like that. He would want us to carry on our traditions and remember all the Christmas' when he was there with us.
So instead of dwelling on the sadness and grief I have to keep making memories with the family I have here. You never know when your last day will come, so you have to make the most of your life while you can.
Thanksgiving this year was spent at my sister's house and for the first time both of our husbands were there. In the past years both of their work schedules would interfere with the day, but this year it all worked out. It was so much fun, and was such a great memory for us all. Between my sister and I we have 10 kids. 9 being girls and 1 boy. Yes, he is out numbered, but he doesn't mind one bit. He gets all the boy attention. The kids always have a blast with each other on any day, but it's the holidays that I have the fondest memories of my cousins, aunt, uncles, and grandparents. So it made me feel good that they all will have that also. We see each other regularly, but holidays are family oriented and it is important to spend every one of them with each other.
If I don't get back to post I hope everyone has a blessed Christmas and a Happy New Year!
Merry Christmas!
We did have our traditional Christmas Eve at at my parents house like we do every year, but this was the first one without him there. It was weird, awkward, uncomfortable, and I know we all felt guilty to still have this family celebration without my dad present. This was our son's first holiday season so that took my mind off of the hurtful things. My heart always had that nagging feeling of hurt that my dad was supposed to be here with us enjoying the grand kids and the adult conversations, but my first child took away from that and made joy for me. I know that sounds selfish, but this is what I did in these days.
Christmas that year was the same, except I felt even worse knowing what he was doing while we were enjoying opening presents and eating. This is when I would block it out and not show any emotion what so ever. How could we carry out this annual tradition when the foundation of our traditions was lying hours away in a bed. I hate it now, and here is where my guilt comes flooding back in because I didn't do more when I could have, but I've learned from those days and know I will never do anything like this again.
The next year was when he was truly gone. We all missed him and it hurt to miss him. It really never gets better over the years, but it does in some strange way. I guess we just learn to accept it, because there isn't anything anyone can do.
I have to be thankful that I got the years I did with my dad at Christmas time, and anytime. I have this picture of him in a Christmas tree frame that goes up along with all my other decorations every year, and it will forever. He is laughing in the photo,and it brings a smile to my face with tears in my eyes, because I know he would want us to remember him like that. He would want us to carry on our traditions and remember all the Christmas' when he was there with us.
So instead of dwelling on the sadness and grief I have to keep making memories with the family I have here. You never know when your last day will come, so you have to make the most of your life while you can.
Thanksgiving this year was spent at my sister's house and for the first time both of our husbands were there. In the past years both of their work schedules would interfere with the day, but this year it all worked out. It was so much fun, and was such a great memory for us all. Between my sister and I we have 10 kids. 9 being girls and 1 boy. Yes, he is out numbered, but he doesn't mind one bit. He gets all the boy attention. The kids always have a blast with each other on any day, but it's the holidays that I have the fondest memories of my cousins, aunt, uncles, and grandparents. So it made me feel good that they all will have that also. We see each other regularly, but holidays are family oriented and it is important to spend every one of them with each other.
If I don't get back to post I hope everyone has a blessed Christmas and a Happy New Year!
Merry Christmas!
Wednesday, November 23, 2011
A New Way
I wrote my story and how I dealt with my dad having Early Onset Alzheimer's, I have posted different links, and what I have thought was good information. I have gotten involved with groups and have been trying to get a website built. I've been asked what is next, and to keep posting. I just have been blank about what to write. I've also been doing a lot of reading and research for content to put on the web site.
I guess I'll just sort of pick up where my journey left off, and write how I deal with this disease in my day to day life. I again do not know if I or my older sister have the mutated gene that our dad carried, but other family members do. So, my journey and fight for Alzheimer's will never be over until the blessed day there is a cure.
Since I have opened my heart and eyes to my past and possible future there isn't a day that goes by that I don't think about what I need to be doing. I am a wife and mother and that is my number one priority so that makes other activities hard to do everyday. I get overwhelmed with all the information that is available now because I want to pass it on to every single person in the world. I want to look some people straight in the face and say "LOOK! This isn't just happening to older people. This is happening to people as young as 30. This needs a cure!! NOW!" I get discouraged with myself because I'm not as of a "go get'er" like I would like to be, and I have so much going on I can't find the time to go volunteer to at least get my foot in the door. Then, I have to stop and think about my life right now in this very moment. My husband and four young children need me now. Not crazy minded about this disease and pre occupied with it so much. They need me to be me now, because I have no idea what my future holds.
I get so wrapped up in reading these blogs that I follow and start hurting for these people that it sometimes effects my attitude and perspective. I just want to help all these people that live hundreds of miles away, and I can't. It makes me feel useless sometimes.
With the holidays here I always miss my dad more. I think that is normal to miss a loved one during special family gatherings. I wish he was still here to be making memories with us and not just remembering the memories we have of him. Everyday we have with someone is a day to be making memories with them.
I hope everyone has a wonderful Thanksgiving.
I guess I'll just sort of pick up where my journey left off, and write how I deal with this disease in my day to day life. I again do not know if I or my older sister have the mutated gene that our dad carried, but other family members do. So, my journey and fight for Alzheimer's will never be over until the blessed day there is a cure.
Since I have opened my heart and eyes to my past and possible future there isn't a day that goes by that I don't think about what I need to be doing. I am a wife and mother and that is my number one priority so that makes other activities hard to do everyday. I get overwhelmed with all the information that is available now because I want to pass it on to every single person in the world. I want to look some people straight in the face and say "LOOK! This isn't just happening to older people. This is happening to people as young as 30. This needs a cure!! NOW!" I get discouraged with myself because I'm not as of a "go get'er" like I would like to be, and I have so much going on I can't find the time to go volunteer to at least get my foot in the door. Then, I have to stop and think about my life right now in this very moment. My husband and four young children need me now. Not crazy minded about this disease and pre occupied with it so much. They need me to be me now, because I have no idea what my future holds.
I get so wrapped up in reading these blogs that I follow and start hurting for these people that it sometimes effects my attitude and perspective. I just want to help all these people that live hundreds of miles away, and I can't. It makes me feel useless sometimes.
With the holidays here I always miss my dad more. I think that is normal to miss a loved one during special family gatherings. I wish he was still here to be making memories with us and not just remembering the memories we have of him. Everyday we have with someone is a day to be making memories with them.
I hope everyone has a wonderful Thanksgiving.
Sunday, October 23, 2011
Just poppin in.
Wow, I haven't posted anything in almost a month! I have been so busy lately. Of course, my kids keep me going every direction all day everyday, but I do try to find the time to work on creating my website and getting more info gathered up to get it going. A couple of weeks ago our computer crashed (again) and I lost all my bookmarks. UGH!! Huge frustration. My hubby rescued our ancient computer once again, and somehow got it back up and running to its capability. He has fixed it's problems to many times over the past 10 years. It will be thrown through the window one of these days, I'm sure of it. jk Maybe Santa will bring us a new one. hee hee!
I have figured out the design part of the website program I am using... for the most part. Now I have to put content on it. I get so excited about what it "could" be, then get discouraged because I don't want it to be just "another" site. The ones out there are already so great! I want it to be useful for people and helpful, but now I am getting overwhelmed with all the things I am finding. There is so much information about Alzheimer's then I ever knew. There are so many more people out there dealing with Early On-set Alzheimer's then I even knew existed. The resources, groups, blogs, organizations, all of it, is so much broader then when my father was alive. The main purpose, of course, is to help find a cure and I am not exactly sure how to do that. I will keep on with it though, because I'm not giving up.
I will keep ya updated. =)
Everyone enjoy your beautiful Fall days!
Until next time,
I have figured out the design part of the website program I am using... for the most part. Now I have to put content on it. I get so excited about what it "could" be, then get discouraged because I don't want it to be just "another" site. The ones out there are already so great! I want it to be useful for people and helpful, but now I am getting overwhelmed with all the things I am finding. There is so much information about Alzheimer's then I ever knew. There are so many more people out there dealing with Early On-set Alzheimer's then I even knew existed. The resources, groups, blogs, organizations, all of it, is so much broader then when my father was alive. The main purpose, of course, is to help find a cure and I am not exactly sure how to do that. I will keep on with it though, because I'm not giving up.
I will keep ya updated. =)
Everyone enjoy your beautiful Fall days!
Until next time,
Monday, September 26, 2011
Friends that won't stay
This next piece really hit home for me. My parents had a lot of friends and there were more that stayed around after my dad's diagnosis came out in the open, then didn't stay, but there were those ones that just never came back around. Some would still come by to ask my dad to help them with their car or borrow a tool, but when they started seeing changes in him they ran for the hills. This story tells how it feels to the one that has this disease that some people just don't really know anything about, and can't face the hard core truth. I'm so thankful for the friends that stuck by my parents and held my dad's hand right up until the end. True friends!!
Why the Stigma?
This is a question I have been asking myself for nearly two years now. I have experienced firsthand how many "Friends" I have lost since announcing my early onset and have also been abused just for being me? All this I don't understand. (I would just like to say that the support I have had from family, a few friends, and complete strangers has been overwhelming and far outweighs the negative comments, but hey!! Everybody is entitled to an opinion.)
It's the two words Alzheimer's and Dementia that seems to start some kind of mental chain reaction where people's minds go into overdrive and imagine God knows what?? Do I sound insane? Are my writings the work of someone like a literary Picasso?? I certainly hope not. So, what is it that sparks such a bad reaction?
I have tried to figure a few things out and come to a couple of conclusions.
Fear of the unknown is almost certainly one of the reasons. I myself don't like unpredictability so I can sort of understand where that is coming from but yet am I alone in wanting to find out all about something I don't know? Especially when it involves a friend? Surely I can't be? As must it help a friend so much if I understood the illness better, which brings me onto my next point.
Not understanding the illness.
Why is it that when I tell people I have Alzheimer's they either "Laugh" thinking it's a joke? Or cock their head to one side (No idea what that's supposed to achieve but it actually does happen lol!) and start to look you up and down. Quickly followed by a sharp exit after the lamest excuse you can imagine.
Do they not understand how hurtful this is? Especially when it is someone you know or have known for years? Yes!!! I have Alzheimer's: Yes: there is no cure: and YES: I am frightened half to death, BUT!!! I am still the same person, with the same feelings. I eat the same as you; I breathe the same as you and I love my family and friends the same as you, I AM THE SAME PERSON!!!
This terrible illness knows no rules and is indifferent to age, race, or creed so this is a plea from an early onset sufferer, who by the grace of God, a loving family and a very good consultant.
I am still able to Blog, talk for ages (most days), write, and play with my grandchildren. I am no different to you really, just a bit forgetful at times but hey!! Who isn't??.
-Norman McNamara
I Haven't Got the Plague
As I walked through town today,
I saw a friendly face,
But as he walked toward me,
He then walked past with pace,
Im sure that he had seen me, and saw my friendly wave,
Ive only got Alzheimer's and not Bubonic plague,
Why do people treat me so, why are they so cruel,
I'm just the same as them, not some bumbling fool,
Some are freinds I have known, all my working life,
Who used to chat and laugh, to both me and my wife,
But now most of them act, as if I don't exist,
And all the good times that we had, are just a mistant mist,
I still laugh and I still cry, and still know that they're there,
Even when they ignore me, without a gleeting care,
But at least I known now, who really are my friends,
And one that I can trust, right up to the end,
So those friends I have lost, I say to one and all,
I hope the dementia demon, never comes to call.
-Norrms
Why the Stigma?
This is a question I have been asking myself for nearly two years now. I have experienced firsthand how many "Friends" I have lost since announcing my early onset and have also been abused just for being me? All this I don't understand. (I would just like to say that the support I have had from family, a few friends, and complete strangers has been overwhelming and far outweighs the negative comments, but hey!! Everybody is entitled to an opinion.)
It's the two words Alzheimer's and Dementia that seems to start some kind of mental chain reaction where people's minds go into overdrive and imagine God knows what?? Do I sound insane? Are my writings the work of someone like a literary Picasso?? I certainly hope not. So, what is it that sparks such a bad reaction?
I have tried to figure a few things out and come to a couple of conclusions.
Fear of the unknown is almost certainly one of the reasons. I myself don't like unpredictability so I can sort of understand where that is coming from but yet am I alone in wanting to find out all about something I don't know? Especially when it involves a friend? Surely I can't be? As must it help a friend so much if I understood the illness better, which brings me onto my next point.
Not understanding the illness.
Why is it that when I tell people I have Alzheimer's they either "Laugh" thinking it's a joke? Or cock their head to one side (No idea what that's supposed to achieve but it actually does happen lol!) and start to look you up and down. Quickly followed by a sharp exit after the lamest excuse you can imagine.
Do they not understand how hurtful this is? Especially when it is someone you know or have known for years? Yes!!! I have Alzheimer's: Yes: there is no cure: and YES: I am frightened half to death, BUT!!! I am still the same person, with the same feelings. I eat the same as you; I breathe the same as you and I love my family and friends the same as you, I AM THE SAME PERSON!!!
This terrible illness knows no rules and is indifferent to age, race, or creed so this is a plea from an early onset sufferer, who by the grace of God, a loving family and a very good consultant.
I am still able to Blog, talk for ages (most days), write, and play with my grandchildren. I am no different to you really, just a bit forgetful at times but hey!! Who isn't??.
-Norman McNamara
I Haven't Got the Plague
As I walked through town today,
I saw a friendly face,
But as he walked toward me,
He then walked past with pace,
Im sure that he had seen me, and saw my friendly wave,
Ive only got Alzheimer's and not Bubonic plague,
Why do people treat me so, why are they so cruel,
I'm just the same as them, not some bumbling fool,
Some are freinds I have known, all my working life,
Who used to chat and laugh, to both me and my wife,
But now most of them act, as if I don't exist,
And all the good times that we had, are just a mistant mist,
I still laugh and I still cry, and still know that they're there,
Even when they ignore me, without a gleeting care,
But at least I known now, who really are my friends,
And one that I can trust, right up to the end,
So those friends I have lost, I say to one and all,
I hope the dementia demon, never comes to call.
-Norrms
Granddads words
My children were to young to remember my dad, but my nieces were older and have memories of him. Their J-Pa. This piece of a story reminded me of him with them and I know he would have said in his own words the same thing. His speech was one of the very first things to go, way before he even got farther along in the stages. So he couldn't tell us what he was feeling, so I think a lot got unnoticed.
"Is that the grandkids?? Hello my lovelies!! Your granddad is still here even though he's more grumpy these days not like he used to be. I've sat here for quite a while now and watched you all grow into your own persons. I just want you to know how proud I am of you all. I hear you asking grandma "Why does granddad not speak anymore?" And "Will granddad ever get better?" I just want you to know that while you keep coming round and seeing grandma and me we appreciate it very much, even though I do sometimes jump a mile when you make a loud noise! Don't worry, children are supposed to be noisy. (just don't tell your gran I said that)"
Now talking to his wife
"As I look around I see all the home made Easter Eggs are as beautiful as ever. I am so pleased you have kept that tradition up, I wouldn't have liked it if you hadn't. I haven't gone anywhere yet, I'm still here my love, you just can't hear me. But when you talk to me so gently and look into my eyes I will blink two or three times just to show you I'm listening, or I will try anyway. Just wanted you to know I am listening to what you say and love hearing the latest news from the family. "
- Norman McNamara
"Is that the grandkids?? Hello my lovelies!! Your granddad is still here even though he's more grumpy these days not like he used to be. I've sat here for quite a while now and watched you all grow into your own persons. I just want you to know how proud I am of you all. I hear you asking grandma "Why does granddad not speak anymore?" And "Will granddad ever get better?" I just want you to know that while you keep coming round and seeing grandma and me we appreciate it very much, even though I do sometimes jump a mile when you make a loud noise! Don't worry, children are supposed to be noisy. (just don't tell your gran I said that)"
Now talking to his wife
"As I look around I see all the home made Easter Eggs are as beautiful as ever. I am so pleased you have kept that tradition up, I wouldn't have liked it if you hadn't. I haven't gone anywhere yet, I'm still here my love, you just can't hear me. But when you talk to me so gently and look into my eyes I will blink two or three times just to show you I'm listening, or I will try anyway. Just wanted you to know I am listening to what you say and love hearing the latest news from the family. "
- Norman McNamara
Sunday, September 25, 2011
A forgotten thought
I wanted to share this.
Today I was outside, enjoying the cool breeze that Oklahoma seldom has. I love this time of year so much. I thought of something, and came in to do it, but I was approach by one of my daughter's telling me something that she was doing with her friends outside as our dog is having some kind of anxiety attack, I call it, because she wants to be outside with the kids and she can only stay in her fence. (very protective, and Playful Mastiff) Then I noticed the dryer had stopped so it was time to rotate the laundry. As I was folding clothes I realized I had no idea what I had came in to do. This was certainly not it, and my thoughts began to spiral as I tried to remember what it was. What was I thinking about, what made me think of this "something"? I couldn't think of it and it was driving me crazy trying to remember what it was.
If I had no idea I had an Alzheimer's gene in my family I wouldn't think twice of me forgetting this thought being anything other than having a lot going on all at once. Which is very normal for me. But because I do and I'm not 100% sure I don't have the disease, I automatically think I am starting to show signs.
Then, I made myself stop. I thought, "You can not start this because if you start thinking every time you forget the littlest thing means you have Alzheimer's, then it will ruin your life." Every one forgets things here and there, and I'm not going to give in even if I find out I do have it. I'm not going to let "maybe" or "definitely" ruin my life. I'm not going to stop fighting until I'm completely unconscious of everything around me. Even then I hope I still have it in me to keep fighting.
Just something I wanted to share for those of us with the demon gene in our DNA. Don't give up while you still are able to make a difference. Don't give up when there still isn't a cure. We gotta keep on fighting!
Today I was outside, enjoying the cool breeze that Oklahoma seldom has. I love this time of year so much. I thought of something, and came in to do it, but I was approach by one of my daughter's telling me something that she was doing with her friends outside as our dog is having some kind of anxiety attack, I call it, because she wants to be outside with the kids and she can only stay in her fence. (very protective, and Playful Mastiff) Then I noticed the dryer had stopped so it was time to rotate the laundry. As I was folding clothes I realized I had no idea what I had came in to do. This was certainly not it, and my thoughts began to spiral as I tried to remember what it was. What was I thinking about, what made me think of this "something"? I couldn't think of it and it was driving me crazy trying to remember what it was.
If I had no idea I had an Alzheimer's gene in my family I wouldn't think twice of me forgetting this thought being anything other than having a lot going on all at once. Which is very normal for me. But because I do and I'm not 100% sure I don't have the disease, I automatically think I am starting to show signs.
Then, I made myself stop. I thought, "You can not start this because if you start thinking every time you forget the littlest thing means you have Alzheimer's, then it will ruin your life." Every one forgets things here and there, and I'm not going to give in even if I find out I do have it. I'm not going to let "maybe" or "definitely" ruin my life. I'm not going to stop fighting until I'm completely unconscious of everything around me. Even then I hope I still have it in me to keep fighting.
Just something I wanted to share for those of us with the demon gene in our DNA. Don't give up while you still are able to make a difference. Don't give up when there still isn't a cure. We gotta keep on fighting!
Tuesday, September 20, 2011
Go Purple on September 21st!
September is World Alzheimer's Month (WAM). Join us in the fight against Alzheimer's by honoring the heroes that fight against the disease every day — and become a hero by helping to raise awareness.
September 21st is Alzheimer's Action Day. Wear purple to raise awareness. My children are wearing their purple shirts to school that they wore to the Walk to End Alzheimer's.
GO PURPLE!! FIND A CURE!!
Tuesday, September 13, 2011
Dementia Awareness Day. September 17th
This is Norm's videos and links to his books. I am planning on putting some of his amazing work on here. Please come back for more.
http://youtu.be/UoIcrbApVjA
Here is his wife's story. You go girl!!
http://youtu.be/0FDOlrCEezo
Here are his books. I have read the first one "Me and my Alzheimer's". I would recommend these to anyone, even those that are not personally effected by the disease. It is such a great insight to what a person suffering from Alzheimer's is feeling and goes through on a day to day basis. Huge eye opener for me.
http://www.amazon.com/s/ref=ntt_athr_dp_sr_1?_encoding=UTF8&sort=relevancerank&search-alias=books&field-author=Mr%20Norman%20Mc%20Namara
http://youtu.be/UoIcrbApVjA
Here is his wife's story. You go girl!!
http://youtu.be/0FDOlrCEezo
Here are his books. I have read the first one "Me and my Alzheimer's". I would recommend these to anyone, even those that are not personally effected by the disease. It is such a great insight to what a person suffering from Alzheimer's is feeling and goes through on a day to day basis. Huge eye opener for me.
http://www.amazon.com/s/ref=ntt_athr_dp_sr_1?_encoding=UTF8&sort=relevancerank&search-alias=books&field-author=Mr%20Norman%20Mc%20Namara
Saturday, September 10, 2011
Needing a push in the right direction.
Any type of Alzheimer's is gut wrenching and means the person diagnosed is going to die. No matter if you are 70 or 40 when diagnosed. The gene my family carries does effect individuals at a lot earlier age and has a specific name, but it doesn't mean I feel like ours is any worse than those that are diagnosed at a later age. I sometimes think people think that the elderly just don't matter anymore. "They are old, they have lived their lives, why try and find a cure for whatever they have, they can't benefit the world anymore." If everyone felt this way, then why try to fight for anything. These "Elderly" are part of our heritage, our family tree, our whole being of existence. ( God is first, but you get what I'm saying) So, if you give up on them, are you saying you give up on yourself as well?
My type of Alzheimer's ( I still do not know if I carry the gene, but family members of mine do) was given to me while I was growing in my mother's womb. I will carry this gene, part of my DNA, all throughout my life. My dad was one of the first to be tested within this type of research for Early On-Set Alzheimer's, and since the 1990's scientist have progressed so much with the facts and diagnosis for people with Early and Late on-set Alzheimer's. This type doesn't sneak up on you gradually when you are 65 or older. This type hits you unexpectedly in your 30's to 40's. Yes, I'm sure there are signs something may be wrong before, but the whole horrible disease hits you as a young adult. (Most people I know still have young children living at home at this age. I have four, ages 9-3 and I'm 29.) That is just four more reasons I want a cure. If I do have the gene each one of children have a 50/50 chance of having it as well. If researchers, scientists, and doctors know so much more then they did ten years ago, I'm certain within the next ten there will be something to stop the disease. I pray sooner, but this is where we step in as being advocates, caregivers, volunteers, donators, victims, ANYTHING to find a cure.
I may have this disease, I may not. If I don't, THANK THE LORD. I am NOT going to stop fighting though. I have decided to dedicated my life to this disease. (to find a cure)
If I do have it, and I am going to find out when I do go do the testing. (Still details to be prepared)
You better get ready. I'm not going to wither away, feel sorry for myself, or hide. I've been given this life, and I intend on living it to the fullest. I went through this horrid disease with my father, and so many of my family members are going through it as we speak. Why wouldn't I do this? I want to help anyone and everyone. I certainly don't want to just find a cure for AD. I would love to help with every disease and illness that doesn't have a cure. This one is just very personal to me.
I've been at a stand still lately on what to write, and what I can do next. I've been very busy lately with my kids, so time on here is pretty limited. I can't stop thinking about it, and it consumes my every thought. I just don't know what my next step needs to be. For anyone reading please give me ideas if you have any. I would greatly appreciate any.
My type of Alzheimer's ( I still do not know if I carry the gene, but family members of mine do) was given to me while I was growing in my mother's womb. I will carry this gene, part of my DNA, all throughout my life. My dad was one of the first to be tested within this type of research for Early On-Set Alzheimer's, and since the 1990's scientist have progressed so much with the facts and diagnosis for people with Early and Late on-set Alzheimer's. This type doesn't sneak up on you gradually when you are 65 or older. This type hits you unexpectedly in your 30's to 40's. Yes, I'm sure there are signs something may be wrong before, but the whole horrible disease hits you as a young adult. (Most people I know still have young children living at home at this age. I have four, ages 9-3 and I'm 29.) That is just four more reasons I want a cure. If I do have the gene each one of children have a 50/50 chance of having it as well. If researchers, scientists, and doctors know so much more then they did ten years ago, I'm certain within the next ten there will be something to stop the disease. I pray sooner, but this is where we step in as being advocates, caregivers, volunteers, donators, victims, ANYTHING to find a cure.
I may have this disease, I may not. If I don't, THANK THE LORD. I am NOT going to stop fighting though. I have decided to dedicated my life to this disease. (to find a cure)
If I do have it, and I am going to find out when I do go do the testing. (Still details to be prepared)
You better get ready. I'm not going to wither away, feel sorry for myself, or hide. I've been given this life, and I intend on living it to the fullest. I went through this horrid disease with my father, and so many of my family members are going through it as we speak. Why wouldn't I do this? I want to help anyone and everyone. I certainly don't want to just find a cure for AD. I would love to help with every disease and illness that doesn't have a cure. This one is just very personal to me.
I've been at a stand still lately on what to write, and what I can do next. I've been very busy lately with my kids, so time on here is pretty limited. I can't stop thinking about it, and it consumes my every thought. I just don't know what my next step needs to be. For anyone reading please give me ideas if you have any. I would greatly appreciate any.
Sunday, September 4, 2011
Some Scientific Background
These are some facts I found on Familial Early On-set Alzheimer's. The presenilin 2 gene is what the DeMoe's carry.
Alzheimer's is the opposite of cancer.
Cancer is runaway cell growth.
Alzheimer's is runaway cell death.
—SANDRA STEINGRABER, Origins of Dementia, Part 2
Alzheimer's disease is classified in two ways: by heritability and by age of onset. Familial AD (FAD) follows a certain inheritance pattern, whereas sporadic AD, according to current research, does not show an inheritance pattern.
Alzheimer's disease is also classified as either early-onset or and late-onset. Early-onset AD occurs in people younger than 65 and is called pre-senile dementia. Late-onset AD, the most common form of the disease, occurs after age 65 and is referred to as senile dementia Alzheimer's type (SDAT). Fortunately, early-onset AD is rare (about 5% to 10% of cases) and affects people between the ages of 30 and 65. It often progresses more rapidly than late-onset AD. Some forms of early-onset AD are inherited.
Research to date indicates that most familial AD has an early onset and that about half of all cases of FAD are known to be caused by mutations (defects) in three genes located on three different chromosomes:
Mutations in the APP gene on chromosome 21
Mutations in the presenilin 1 gene on chromosome 14
Mutations in the presenilin 2 gene on chromosome 1
Everyone inherits two copies of each of these genes—one from each parent. A parent carrying a defective version of one of these genes has a 50-50 chance of transmitting the defective gene to each of his or her children. A single defective version of any one of these three genes will cause early AD nearly 100 percent of the time.
This type of inheritance pattern is called autosomal dominant inheritance. The total known number of these cases is small—between 100 and 200 worldwide. There is no scientific evidence that links these mutations with the more common sporadic, late-onset AD.
Presenilin 1 is a protein found in brain cells. Its function is unknown. However, it may be involved in protein production and trafficking, especially during early development. More than 40 different mutations have been found in the presenilin 1 gene, and these mutations associate with early-onset familial alzheimer's disease. The disease strikes as early as 28 and as late as 62, with an average age of onset in the mid-forties. Mutations in presenilin 1 tend to elevate levels of amyloid beta in the blood, cerebrospinal fluid, and brains of those affected by mutations. Again, mutations in the presenilin 1 gene are dominant. This means that if a mother or father has the mutated presenilin 1 gene that causes alzheimer's disease, then each of their children has a 50-50 chance of having the mutation. Those children with the mutation have an almost virtual certainty of developing the disease.
Nearly 5.2 million Americans are living with Alzheimer's disease; although most of them are older, about 5% have a form of the disease called early-onset Alzheimer's. This condition can be diagnosed in people in their 30s, 40s, and 50s.
Although early-onset Alzheimer's disease is rare, those who suspect that they or a loved one have it should seek the advice of a physician immediately, regardless of age. New medications show promising results in slowing the progression of the disease. And although the diagnosis is certainly scary, a proactive approach is not only practical but can give those affected some sense of control over what lies ahead.
All Alzheimer's disease involves the progressive degeneration of the brain cells, beginning with the hippocampus, the area of the brain that processes memories, and the cerebral cortex, which is responsible for decision making and thought processes. Scientists aren't certain what causes the degeneration or why the progression of the disease varies tremendously among individuals. Most cases of late-onset Alzheimer's disease, usually diagnosed in people over the age of 65, are what researchers call "sporadic" or not necessarily hereditary, although the trigger hasn't been identified. However, researchers agree that almost all early-onset Alzheimer's disease is inherited.
A Strong Genetic Link
Inherited Alzheimer's is also referred to as familial Alzheimer's disease (FAD). According to the National Institute on Aging, if a parent has the familial form of early-onset Alzheimer's disease, his children have a 50% chance of developing the condition.
Mutations on three genes have been linked to familial, early-onset Alzheimer's disease. These genes have been labeled PS1, PS2 and APP by researchers.
Research from the 1990s indicates that mutations on a gene labeled PS1 may be responsible for 30% to 60% of early-onset Alzheimer's cases. Newer research is inconclusive regarding the exact prevalence of specific mutations, but confirms that a PS1 gene is the mutation most commonly linked to FAD.
It is possible to undergo genetic testing for these gene mutations, but there are many pros and cons to doing so, ranging from being able to provide this important health information to your children to coping with the knowledge that Alzheimer's is inevitable. A trusted doctor or genetic counselor can help you decide whether genetic testing is right for you or a loved one. Be sure to check with your insurance company before pursuing testing, because the coverage for costs of testing varies, and some policies don't pay for any of it.
ScienceDaily (June 11, 2010) — Researchers have discovered how mutations in the presenilin 1 gene cause early-onset Alzheimer's disease (AD). The finding, reported online in the journal Cell, opens the door to developing novel treatments for this form of the mind-robbing disease and for the more common, late-onset form that develops later in life and affects millions of people worldwide.
The presenilin gene is most commonly associated with the early-onset familial form of Alzheimer's, which runs in families and can strike people in their 30s. The gene was discovered 15 years ago, but until now no one understood how mutations in the gene caused the disease.
The researchers led by Ralph Nixon , MD, PhD, professor in the Departments of Psychiatry and Cell Biology at NYU Langone Medical Center and director of the Center for Dementia Research at the Nathan S. Kline Institute for Psychiatric Research, discovered that the presenilin 1 gene performs a crucial biological function that enables cells to digest unwanted proteins and is essential for brain cell survival. The mutations, they report, disrupt this cellular protein-recycling process, killing nerve cells.
"In mouse models of Alzheimer's disease and in skin cell of patients with Alzheimer's disease caused by presenilin mutations, we observed that the ability to break down and reuse normal proteins and to remove potentially toxic damaged proteins and organelles is severely impaired," says Dr. Nixon who is also director of the Center of Excellence on Brain Aging and the Silberstein Alzheimer's Institute at NYU Langone Medical Center. The impairment can kill nerve cells, and the loss of neurons does not appear to be dependent on amyloid beta, the plaque-forming protein found in the brains of patients.
"Most of the drug development for Alzheimer's has been focused on removing amyloid from the brain," says Dr. Nixon. "Our findings strongly suggest that there are alternative pathways that can be targeted as well. For example, therapies could be aimed at repairing the cellular mechanism that eliminates toxic proteins before they damage the brain."
Preliminary observations from ongoing studies at the Nathan Kline Institute, says Dr. Nixon, indicate that similar disruptions of the cellular protein-recycling process occur in neurons affected by late-onset Alzheimer's, suggesting that factors other than mutations in the presenilin gene can also impair this process.
More than 160 rare mutations in the presenilin 1 gene and two others have been found to cause early-onset familial Alzheimer's disease. Only a few genes associated with late-onset form of Alzheimer's, the most common form of senile dementia, have been identified so far.
"Presently, no effective treatment exists to either slow or prevent the progression of Alzheimer's disease," says Dr. Nixon. "There is urgent need to see Alzheimer's disease as multi-factorial and to approach the treatment from that perspective."
Funding for this research was provided by the National Institutes of Health (NIH) and the Alzheimer's Association. The study was done in collaboration with NYU Langone's Silberstein Alzheimer's Institute and the Center for Dementia Research at the Nathan S. Kline Institute for Psychiatric Research (NY); The Marion Bessin Liver Research Center at Albert Einstein College of Medicine (NY); Osaka University Graduate School of Medicine (Japan); University of Alberta, Edmonton (Canada); and the University of Chicago (Illinois).
Co-authors include Ju-Hyun Lee, Haung Yu, Asok Kumar, Sooyeon Lee, Panaiyur S. Mohan, Corrinne M. Peterhoff and Devin M. Wolfe of NYU Langone Medical Center. Dr. Yu is presently at the Taub Institute, Columbia University.
Alzheimer's is the opposite of cancer.
Cancer is runaway cell growth.
Alzheimer's is runaway cell death.
—SANDRA STEINGRABER, Origins of Dementia, Part 2
Alzheimer's disease is classified in two ways: by heritability and by age of onset. Familial AD (FAD) follows a certain inheritance pattern, whereas sporadic AD, according to current research, does not show an inheritance pattern.
Alzheimer's disease is also classified as either early-onset or and late-onset. Early-onset AD occurs in people younger than 65 and is called pre-senile dementia. Late-onset AD, the most common form of the disease, occurs after age 65 and is referred to as senile dementia Alzheimer's type (SDAT). Fortunately, early-onset AD is rare (about 5% to 10% of cases) and affects people between the ages of 30 and 65. It often progresses more rapidly than late-onset AD. Some forms of early-onset AD are inherited.
Research to date indicates that most familial AD has an early onset and that about half of all cases of FAD are known to be caused by mutations (defects) in three genes located on three different chromosomes:
Mutations in the APP gene on chromosome 21
Mutations in the presenilin 1 gene on chromosome 14
Mutations in the presenilin 2 gene on chromosome 1
Everyone inherits two copies of each of these genes—one from each parent. A parent carrying a defective version of one of these genes has a 50-50 chance of transmitting the defective gene to each of his or her children. A single defective version of any one of these three genes will cause early AD nearly 100 percent of the time.
This type of inheritance pattern is called autosomal dominant inheritance. The total known number of these cases is small—between 100 and 200 worldwide. There is no scientific evidence that links these mutations with the more common sporadic, late-onset AD.
Presenilin 1 is a protein found in brain cells. Its function is unknown. However, it may be involved in protein production and trafficking, especially during early development. More than 40 different mutations have been found in the presenilin 1 gene, and these mutations associate with early-onset familial alzheimer's disease. The disease strikes as early as 28 and as late as 62, with an average age of onset in the mid-forties. Mutations in presenilin 1 tend to elevate levels of amyloid beta in the blood, cerebrospinal fluid, and brains of those affected by mutations. Again, mutations in the presenilin 1 gene are dominant. This means that if a mother or father has the mutated presenilin 1 gene that causes alzheimer's disease, then each of their children has a 50-50 chance of having the mutation. Those children with the mutation have an almost virtual certainty of developing the disease.
Nearly 5.2 million Americans are living with Alzheimer's disease; although most of them are older, about 5% have a form of the disease called early-onset Alzheimer's. This condition can be diagnosed in people in their 30s, 40s, and 50s.
Although early-onset Alzheimer's disease is rare, those who suspect that they or a loved one have it should seek the advice of a physician immediately, regardless of age. New medications show promising results in slowing the progression of the disease. And although the diagnosis is certainly scary, a proactive approach is not only practical but can give those affected some sense of control over what lies ahead.
All Alzheimer's disease involves the progressive degeneration of the brain cells, beginning with the hippocampus, the area of the brain that processes memories, and the cerebral cortex, which is responsible for decision making and thought processes. Scientists aren't certain what causes the degeneration or why the progression of the disease varies tremendously among individuals. Most cases of late-onset Alzheimer's disease, usually diagnosed in people over the age of 65, are what researchers call "sporadic" or not necessarily hereditary, although the trigger hasn't been identified. However, researchers agree that almost all early-onset Alzheimer's disease is inherited.
A Strong Genetic Link
Inherited Alzheimer's is also referred to as familial Alzheimer's disease (FAD). According to the National Institute on Aging, if a parent has the familial form of early-onset Alzheimer's disease, his children have a 50% chance of developing the condition.
Mutations on three genes have been linked to familial, early-onset Alzheimer's disease. These genes have been labeled PS1, PS2 and APP by researchers.
Research from the 1990s indicates that mutations on a gene labeled PS1 may be responsible for 30% to 60% of early-onset Alzheimer's cases. Newer research is inconclusive regarding the exact prevalence of specific mutations, but confirms that a PS1 gene is the mutation most commonly linked to FAD.
It is possible to undergo genetic testing for these gene mutations, but there are many pros and cons to doing so, ranging from being able to provide this important health information to your children to coping with the knowledge that Alzheimer's is inevitable. A trusted doctor or genetic counselor can help you decide whether genetic testing is right for you or a loved one. Be sure to check with your insurance company before pursuing testing, because the coverage for costs of testing varies, and some policies don't pay for any of it.
ScienceDaily (June 11, 2010) — Researchers have discovered how mutations in the presenilin 1 gene cause early-onset Alzheimer's disease (AD). The finding, reported online in the journal Cell, opens the door to developing novel treatments for this form of the mind-robbing disease and for the more common, late-onset form that develops later in life and affects millions of people worldwide.
The presenilin gene is most commonly associated with the early-onset familial form of Alzheimer's, which runs in families and can strike people in their 30s. The gene was discovered 15 years ago, but until now no one understood how mutations in the gene caused the disease.
The researchers led by Ralph Nixon , MD, PhD, professor in the Departments of Psychiatry and Cell Biology at NYU Langone Medical Center and director of the Center for Dementia Research at the Nathan S. Kline Institute for Psychiatric Research, discovered that the presenilin 1 gene performs a crucial biological function that enables cells to digest unwanted proteins and is essential for brain cell survival. The mutations, they report, disrupt this cellular protein-recycling process, killing nerve cells.
"In mouse models of Alzheimer's disease and in skin cell of patients with Alzheimer's disease caused by presenilin mutations, we observed that the ability to break down and reuse normal proteins and to remove potentially toxic damaged proteins and organelles is severely impaired," says Dr. Nixon who is also director of the Center of Excellence on Brain Aging and the Silberstein Alzheimer's Institute at NYU Langone Medical Center. The impairment can kill nerve cells, and the loss of neurons does not appear to be dependent on amyloid beta, the plaque-forming protein found in the brains of patients.
"Most of the drug development for Alzheimer's has been focused on removing amyloid from the brain," says Dr. Nixon. "Our findings strongly suggest that there are alternative pathways that can be targeted as well. For example, therapies could be aimed at repairing the cellular mechanism that eliminates toxic proteins before they damage the brain."
Preliminary observations from ongoing studies at the Nathan Kline Institute, says Dr. Nixon, indicate that similar disruptions of the cellular protein-recycling process occur in neurons affected by late-onset Alzheimer's, suggesting that factors other than mutations in the presenilin gene can also impair this process.
More than 160 rare mutations in the presenilin 1 gene and two others have been found to cause early-onset familial Alzheimer's disease. Only a few genes associated with late-onset form of Alzheimer's, the most common form of senile dementia, have been identified so far.
"Presently, no effective treatment exists to either slow or prevent the progression of Alzheimer's disease," says Dr. Nixon. "There is urgent need to see Alzheimer's disease as multi-factorial and to approach the treatment from that perspective."
Funding for this research was provided by the National Institutes of Health (NIH) and the Alzheimer's Association. The study was done in collaboration with NYU Langone's Silberstein Alzheimer's Institute and the Center for Dementia Research at the Nathan S. Kline Institute for Psychiatric Research (NY); The Marion Bessin Liver Research Center at Albert Einstein College of Medicine (NY); Osaka University Graduate School of Medicine (Japan); University of Alberta, Edmonton (Canada); and the University of Chicago (Illinois).
Co-authors include Ju-Hyun Lee, Haung Yu, Asok Kumar, Sooyeon Lee, Panaiyur S. Mohan, Corrinne M. Peterhoff and Devin M. Wolfe of NYU Langone Medical Center. Dr. Yu is presently at the Taub Institute, Columbia University.
Thursday, September 1, 2011
Walk to End Alzheimer's a success
I can not Thank You enough to all of you that came, to those that donated, and even the ones of you that couldn't do either, but verbally gave us your support.
This is the Memory Garden. We could write a message on the pedals, whatever we wanted, and while we were walking the staff "planted" our pinwheel flowers. It was so pretty. Although the wind only caught the wheels a few times, when it did it was beautiful.
The yellow ones stood for caregivers, the blue were for those suffering with Alzheimer's, and the purple were for In Memory Of the loved ones already gone.
This is the front. I saw this design on a different shirt and loved the meaning. Hope, always there. Love, because we all love. And Cure, because there needs to be one for this disease.
Our neighbor, and friend, made these shirts. It was a very last minute idea, and next year I am going to have many made to supply everyone that wants to come walk for our team. He did a terrific job! If anyone wants this design, or any other shirt, you can contact him,
brandon@ndnartmarket.com
He graciously made these last minute for us, and gave us a huge discount because it was for this cause.
Sunday, August 21, 2011
Not giving up!!
I haven't posted anything new in a while. I've been blank as to what to write now. I still have a story because I am still living my life. I just don't know where to pick up. I've become frustrated because I have been posting things about the Walk to end Alzheimer's on my facebook page, and other things about my family. I just don't think people are getting it. I do NOT want people's money (yes I've asked for donations, but that is part of doing the walk) I do NOT want people's sympathy, or to think I am asking anything of them. I do NOT want anyone to think I'm doing this all for attention. I know to some this is all new to them, and by me being so public now with it all may seem strange. I know that people have different illnesses in their families. I know that everyone has lost or knows someone that has lost a loved one to some sort of illness or disease. I am NOT saying that what are family has is any worse than anyone else's problems. I know some people don't want to hear about sad depressing things, and I agree I don't either. BUT...
I never accepted this disease when I was going through it with my own father, and now I have. I am just letting people know what it is, what it does, and my family is right here going through it. You don't have to be my friend because of it. I may come across pushy with this all, but I either go full force with something or I don't go at all. I haven't been tested yet, but I am, and if I have the gene or not I'm going to fight for all the people that are or will be going through it. Right now, I want to stand up and fight for EVERY disease, and maybe someday I can get my foot in the door to do that.
I always think to much about what other people think, and I let that get in the way sometimes of things I do. I have very low self esteem, no matter how much my loved ones try to build me up. I can't let that get in the way with this. I just don't want anyone to think I am all of a sudden trying to get sympathy, or acknowledgement for something. The only thing I want is to help my family, and anyone else get through this disease, and I want to do all I can to benefit towards research and a cure.
People that don't know someone personally might not pay much attention to how important awareness is, because they aren't or haven't experienced it. I understand, because before my dad got sick I couldn't relate to many people's struggles. I understand that many people may already give and support a different association or foundation, and that is wonderful. I don't expect everyone to drop what they are already doing and run to my families side. I am doing this for the DeMoe family, and for right here where I live it also includes me and my children and my sister and her children. So think whatever you want, say whatever you want, but I'm not going to stop talking about it.
I let my bitterness, and spitefulness get in the way to long with this disease. I have opened up, I have let go, and I have accepted whatever God deals me. He has my life in His hands, and my families as well.
I never accepted this disease when I was going through it with my own father, and now I have. I am just letting people know what it is, what it does, and my family is right here going through it. You don't have to be my friend because of it. I may come across pushy with this all, but I either go full force with something or I don't go at all. I haven't been tested yet, but I am, and if I have the gene or not I'm going to fight for all the people that are or will be going through it. Right now, I want to stand up and fight for EVERY disease, and maybe someday I can get my foot in the door to do that.
I always think to much about what other people think, and I let that get in the way sometimes of things I do. I have very low self esteem, no matter how much my loved ones try to build me up. I can't let that get in the way with this. I just don't want anyone to think I am all of a sudden trying to get sympathy, or acknowledgement for something. The only thing I want is to help my family, and anyone else get through this disease, and I want to do all I can to benefit towards research and a cure.
People that don't know someone personally might not pay much attention to how important awareness is, because they aren't or haven't experienced it. I understand, because before my dad got sick I couldn't relate to many people's struggles. I understand that many people may already give and support a different association or foundation, and that is wonderful. I don't expect everyone to drop what they are already doing and run to my families side. I am doing this for the DeMoe family, and for right here where I live it also includes me and my children and my sister and her children. So think whatever you want, say whatever you want, but I'm not going to stop talking about it.
I let my bitterness, and spitefulness get in the way to long with this disease. I have opened up, I have let go, and I have accepted whatever God deals me. He has my life in His hands, and my families as well.
Tuesday, August 9, 2011
DIAN
This is the study I will be doing, that our family has been apart of for some time. I do not have a date set, but I have heard from the University and they have received my paperwork.
DIAN - A study opportunity for families with inherited early-onset AD The Dominantly Inherited
Alzheimer's Network (DIAN) study has been established by the National Institute on Aging of the National Institutes of Health (US) to bring together researchers who study genetic forms of Alzheimer's disease (AD). The DIAN research volunteers are members of families in which AD is dominantly inherited, meaning that about 50% of the individuals in each generation of a family develop AD, generally before age 60. These rare forms of AD are caused by a mutation in one of 3 genes. Each child of an affected parent has a 50% chance of inheriting the mutation. If they do, they will likely develop the dementia of AD at about the same age as their parent. Siblings who do not have the mutation have no greater risk of developing AD than someone without a family history of AD and will participate in DIAN as part of a comparison group for their mutation-carrying siblings. Individuals participating in DIAN are not required to know whether or not they carry a mutation. Should participants wish to learn their mutation status through genetic testing following genetic counseling, DIAN can assist with this process.
Research suggests that brain changes may occur years before actual Alzheimer's symptoms are detected. The major goal of DIAN is to study these changes in people who carry an AD mutation in order to determine how the disease process develops before there are any symptoms. Ultimately, knowledge gained from DIAN may lead to tests that detect people who still are normal but are at very high risk of developing dementia caused by AD. All DIAN participants will be members of families with dominantly inherited AD caused by a known mutation and may be ideal candidates to participate in possible future studies of drugs that may have the potential to halt the AD process and prevent dementia.
People from families with a known mutation causing AD are eligible to participate in DIAN and its studies of physical and mental changes that may predict future AD. These studies include:
• clinical interviews
• mental status testing
• brain scans, including magnetic resonance
imaging (MRI) and
positron emission tomography (PET)
• blood assays, including genetic studies
• assays of cerebrospinal fluid (CSF),
obtained by lumbar puncture (spinal
tap)
Presently, there are 10 DIAN study sites: 6 in the US, 1 in the United Kingdom, and 3 in Australia. Research volunteers travel to one of the sites for the studies, which are repeated every few years. It is expected that each round of DIAN studies will take about three days to complete. All DIAN assessments are for research purposes and are supported
by DIAN. Reasonable costs of travel to a study site, accommodations and meals
during study participation may also be covered by DIAN. Volunteers may receive payment for some study procedures; whether payment is offered and the amount will be determined by the
individual study site. DIAN participants need to:
• have a biological parent or sibling
with AD caused by a known mutation
• be at least 18 years of age
• speak and read English
• have someone who knows them well
and is willing to answer questions
about their memory and thinking.
Eligible individuals who volunteer to enroll in DIAN will contribute to this unique international effort to discover the basic causes of AD. At the same time, they must be highly committed,
because DIAN asks much from these volunteers in terms of time and testing.
It is anticipated that the improved understanding of the AD process will result in better tests to detect AD and eventually lead to therapies to treat or even prevent the illness. However, there
can be no guarantees of success in these areas, and almost certainly not within the next few years. DIAN volunteers who donate their valuable time to DIAN may not directly benefit themselves but hopefully will greatly help their children and grandchildren.
More information about DIAN can be
found at www.dian-info.org or by calling
the DIAN Global Coordinator at (314)
286-2683.
DIAN - A study opportunity for families with inherited early-onset AD The Dominantly Inherited
Alzheimer's Network (DIAN) study has been established by the National Institute on Aging of the National Institutes of Health (US) to bring together researchers who study genetic forms of Alzheimer's disease (AD). The DIAN research volunteers are members of families in which AD is dominantly inherited, meaning that about 50% of the individuals in each generation of a family develop AD, generally before age 60. These rare forms of AD are caused by a mutation in one of 3 genes. Each child of an affected parent has a 50% chance of inheriting the mutation. If they do, they will likely develop the dementia of AD at about the same age as their parent. Siblings who do not have the mutation have no greater risk of developing AD than someone without a family history of AD and will participate in DIAN as part of a comparison group for their mutation-carrying siblings. Individuals participating in DIAN are not required to know whether or not they carry a mutation. Should participants wish to learn their mutation status through genetic testing following genetic counseling, DIAN can assist with this process.
Research suggests that brain changes may occur years before actual Alzheimer's symptoms are detected. The major goal of DIAN is to study these changes in people who carry an AD mutation in order to determine how the disease process develops before there are any symptoms. Ultimately, knowledge gained from DIAN may lead to tests that detect people who still are normal but are at very high risk of developing dementia caused by AD. All DIAN participants will be members of families with dominantly inherited AD caused by a known mutation and may be ideal candidates to participate in possible future studies of drugs that may have the potential to halt the AD process and prevent dementia.
People from families with a known mutation causing AD are eligible to participate in DIAN and its studies of physical and mental changes that may predict future AD. These studies include:
• clinical interviews
• mental status testing
• brain scans, including magnetic resonance
imaging (MRI) and
positron emission tomography (PET)
• blood assays, including genetic studies
• assays of cerebrospinal fluid (CSF),
obtained by lumbar puncture (spinal
tap)
Presently, there are 10 DIAN study sites: 6 in the US, 1 in the United Kingdom, and 3 in Australia. Research volunteers travel to one of the sites for the studies, which are repeated every few years. It is expected that each round of DIAN studies will take about three days to complete. All DIAN assessments are for research purposes and are supported
by DIAN. Reasonable costs of travel to a study site, accommodations and meals
during study participation may also be covered by DIAN. Volunteers may receive payment for some study procedures; whether payment is offered and the amount will be determined by the
individual study site. DIAN participants need to:
• have a biological parent or sibling
with AD caused by a known mutation
• be at least 18 years of age
• speak and read English
• have someone who knows them well
and is willing to answer questions
about their memory and thinking.
Eligible individuals who volunteer to enroll in DIAN will contribute to this unique international effort to discover the basic causes of AD. At the same time, they must be highly committed,
because DIAN asks much from these volunteers in terms of time and testing.
It is anticipated that the improved understanding of the AD process will result in better tests to detect AD and eventually lead to therapies to treat or even prevent the illness. However, there
can be no guarantees of success in these areas, and almost certainly not within the next few years. DIAN volunteers who donate their valuable time to DIAN may not directly benefit themselves but hopefully will greatly help their children and grandchildren.
More information about DIAN can be
found at www.dian-info.org or by calling
the DIAN Global Coordinator at (314)
286-2683.
Monday, August 8, 2011
Walk to End Alzheimer's
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