I must be more tired than I thought today because it has taken me forever to figure out how to log into this blog to post. But, now that I am here.....
The fourth and fifth part of my friend Rich's interview can now be found on Alzforum at this link
http://www.alzforum.org/eFAD/profiles/bozanich1.asp#bozanich4
I've taken this out of the fourth installment because this hit so close to home for me.
Alzforum: People with high IQ tend to be more difficult to diagnose because they compensate so well.
RB: Yes, the "cognitive reserve" again. I take that to mean that people who had a high degree of intelligence, or high degree of functioning, have to lose more for it to either bother them, or become noticeable to the point where someone thinks, "Okay, something is clearly wrong with Joe." I remember when I got my diagnosis, a good friend said, "Well, you were always too smart anyway. Now you'll be just like the rest of us."
That was meant as a compliment, but it's not very comforting. My friend W. and I often talk about how people will say to us, "Oh, you don't have it." He also had a very high-functioning career. So although he notices his deficits and that he is not functioning the way he once did, others don't see it much, because he is not what people have in their mind as the stereotype of a person with dementia.
To get back to my diagnosis, seeing the results of my neuropsych exam was heartbreaking. My reading comprehension was grade-school level. She had to keep giving me simpler and simpler passages to read. I think I read a seventh-grade passage and got every question wrong. And what did I do for a living? I was an editor. Do you think someone would ever allow me to work in publishing again if I couldn't read a simple passage and retain its meaning? Thankfully, no one is testing me after it takes me 10 times to read an article in the newspaper before some small part of it sinks in."
Rich says things so eloquently. I remember reading my neuropsych evaluation and my heart sank. Not only was this the first time that I saw the words "probably Alzheimer's disease" but it showed my IQ as being very very low. I knew I had a relatively high IQ at one point and I felt stupid. I know I'm not stupid, but I've said many times that this disease makes you feel stupid, because once simple tasks are so hard to do. I have to constantly remind myself that I am not stupid -- the disease is making me do stupid things.
Thanks again Rich for your interview. I know it was a long process but you said everything so well. Best of luck on your conference this weekend.
Tuesday, October 23, 2007
Nightly News on NBC
The piece on Spencer Johansen was great on NBC Nightly news. I hope you got a chance to watch it. If not, please check it out on their website at http://www.msnbc.msn.com/id/3032619
There is a little more on the website.
I think they did a good job and Spencer did a great job. Hopefully we will see more of this type of coverage in the weeks and months to come.
As always, I'm asking you to send feeback to NBC nightly news thanking them for their coverage. Emails can be sent to nightly@nbc.com.
There is a little more on the website.
I think they did a good job and Spencer did a great job. Hopefully we will see more of this type of coverage in the weeks and months to come.
As always, I'm asking you to send feeback to NBC nightly news thanking them for their coverage. Emails can be sent to nightly@nbc.com.
Monday, October 22, 2007
Part III
of Rich's interview is now on Alzforum. Here is the link http://www.alzforum.org/
I have heard from many of you that you have enjoyed reading about Rich and his "adventures" -- my word, not his! I really like the part about reading the headline in the paper and not being able to undertand it. This happens to me all the time. I hate it! And, then having to re-read the articles to have them make sense. I don't do movies anymore either -- too hard to follow.
I really appreciate Rich putting into words what some of us cannot.
I have heard from many of you that you have enjoyed reading about Rich and his "adventures" -- my word, not his! I really like the part about reading the headline in the paper and not being able to undertand it. This happens to me all the time. I hate it! And, then having to re-read the articles to have them make sense. I don't do movies anymore either -- too hard to follow.
I really appreciate Rich putting into words what some of us cannot.
Sunday, October 21, 2007
NBC Nightly News
on Monday night (Oct. 22) is suppose to have a feature on one of the members of our Early Stage Advisory Group -- his name is Spencer Johansen. He is still working as a police chief in the small town of Lexington Illinois. Not far from my home town in Illinois.
When Spencer announced he had the early stages of Alzheimer's and announced it to his community they were very supportive. The media has taken a look at this and wants to discuss the fact that he has alzheimer's and carries a gun. We'll see how the news piece handles this.
Please watch if you can.
When Spencer announced he had the early stages of Alzheimer's and announced it to his community they were very supportive. The media has taken a look at this and wants to discuss the fact that he has alzheimer's and carries a gun. We'll see how the news piece handles this.
Please watch if you can.
Saturday, October 20, 2007
Cognitive Reserve
The Memory Walk was today. It was a great day -- lots of people and the weather was beautiful. We had over 450 walkers registered before the day started, $45,000 raised before the day started and 39 teams. I don't know where we ended up money wise but we'll know soon enough. The goal for our walk was $75,000 and I think we will make that. It was a great event. Having said that -- I'm glad it is over.
When I came home I told my husband my body and my brain were so tired I didn't know what to do. I rested, took a good nap, and rested some more. It will take my brain a few days to recover. I bring this up, because there has been much discussion lately about "cognitive reserve". I never really knew it had a name, but I figured that someone would come up with it. It is where you can store up all this brain power for something and then it is shot and gone for several days.
I am putting a link in here that I hope you will all read if you are caring for someone with Alzheimer's -- or have it yourself. Rich Bozanich is a friend from California that serves on the Early Stage Advisroy Group with me. Rich is a journalist and can put into words so eloquently what I can't. The Alzforum http://www.alzforum.org/ has an interview with Rich that to me is amazing. The interview is going to be in five parts with the first two posted at this link. Rich and another college Jay Smith have worked tirelessly for the last 15 months to put together an early memory loss forum in Los Angeles. It is next week and it is sold out with 350 people signed up. They've done a great job in putting this together and I know that they will be totally exhausted when it is over. Many people will be better off having attended this seminar I know. I wish I could be there with them, but they know I am there in spirit. Please take a few minutes to read Rich's interview. It is very enlightening. I hate it that my words don't come out like Rich's -- but at least someone can do it! I especially like Rich's comments in the second part of the interview when people are trying to make themselves feel better by trying to make you feel better. I kind of had to laugh out loud because we have all been there. Thanks Rich!
Hopefully I can get my brain wrapped around a few more thoughts and write some more about the walk soon. My team did a great job -- they raised almost $15,000 and we still have money coming in -- so we might make it yet.
When I came home I told my husband my body and my brain were so tired I didn't know what to do. I rested, took a good nap, and rested some more. It will take my brain a few days to recover. I bring this up, because there has been much discussion lately about "cognitive reserve". I never really knew it had a name, but I figured that someone would come up with it. It is where you can store up all this brain power for something and then it is shot and gone for several days.
I am putting a link in here that I hope you will all read if you are caring for someone with Alzheimer's -- or have it yourself. Rich Bozanich is a friend from California that serves on the Early Stage Advisroy Group with me. Rich is a journalist and can put into words so eloquently what I can't. The Alzforum http://www.alzforum.org/ has an interview with Rich that to me is amazing. The interview is going to be in five parts with the first two posted at this link. Rich and another college Jay Smith have worked tirelessly for the last 15 months to put together an early memory loss forum in Los Angeles. It is next week and it is sold out with 350 people signed up. They've done a great job in putting this together and I know that they will be totally exhausted when it is over. Many people will be better off having attended this seminar I know. I wish I could be there with them, but they know I am there in spirit. Please take a few minutes to read Rich's interview. It is very enlightening. I hate it that my words don't come out like Rich's -- but at least someone can do it! I especially like Rich's comments in the second part of the interview when people are trying to make themselves feel better by trying to make you feel better. I kind of had to laugh out loud because we have all been there. Thanks Rich!
Hopefully I can get my brain wrapped around a few more thoughts and write some more about the walk soon. My team did a great job -- they raised almost $15,000 and we still have money coming in -- so we might make it yet.
Tuesday, October 16, 2007
Lots of News on Alzheimer's
You might have read an article about a new blood test designed to detect Alzheimer's much earlier than can now be done. It is going through testing and is expected to be on the market by 2009 and if everything goes well. One member of our National Advisory group was on CBS news last night in relation to a story about this new test. He did a great job!
The national office called me yesterday to see if I could do an interview with ABC news, but I had to make my way to the ABC affiliation in Atlanta in exactly three hours from the phone call. At the time of the day they called me if would have taken me too long to get ready and to get to Atlanta during rush hour traffic to make it, so someone else was called to do it. The networks sometimes don't give the national office a lot of time to react. Luckily, there are many on our advisory group that live closer to a large city where this can happen.
Here is a link to another story popular yesterday -- this discusses several different things in the pipeline to help us. http://www.msnbc.msn.com/id/19177355/
The national office called me yesterday to see if I could do an interview with ABC news, but I had to make my way to the ABC affiliation in Atlanta in exactly three hours from the phone call. At the time of the day they called me if would have taken me too long to get ready and to get to Atlanta during rush hour traffic to make it, so someone else was called to do it. The networks sometimes don't give the national office a lot of time to react. Luckily, there are many on our advisory group that live closer to a large city where this can happen.
Here is a link to another story popular yesterday -- this discusses several different things in the pipeline to help us. http://www.msnbc.msn.com/id/19177355/
Sunday, October 14, 2007
The Week
It's been a busy week. I think I have one more busy week this week and then I can coast for awhile.
Thanks to all who called me this week or sent emails. I appreciate your thoughtfulness and remembering me. I haven't gotten around to returning a lot of the emails but I will!
I've been eating way too much lately and have to get back on the wagon. When it gets a little cooler I turn to comfort foods and those are not always as healthy as they should be.
Many of you have been asking if Alan and Jennifer have set a wedding date yet. There's no long answer -- the short of it is no. I'll be sure to let you know when they do.
Have lots of meetings and planning for the walk yet to do this week. Saturday is our big day. My team -- Team Athens has raised over $10,000 now and I think that we'll top out over $12,500 -- or at least that is what I am hoping for. We are suppose to get some much needed rain later in the week -- and if it rains on Saturday that will be o.k. -- because we need the rain so much.
Thanks to all who called me this week or sent emails. I appreciate your thoughtfulness and remembering me. I haven't gotten around to returning a lot of the emails but I will!
I've been eating way too much lately and have to get back on the wagon. When it gets a little cooler I turn to comfort foods and those are not always as healthy as they should be.
Many of you have been asking if Alan and Jennifer have set a wedding date yet. There's no long answer -- the short of it is no. I'll be sure to let you know when they do.
Have lots of meetings and planning for the walk yet to do this week. Saturday is our big day. My team -- Team Athens has raised over $10,000 now and I think that we'll top out over $12,500 -- or at least that is what I am hoping for. We are suppose to get some much needed rain later in the week -- and if it rains on Saturday that will be o.k. -- because we need the rain so much.
Thursday, October 11, 2007
Cooler Weather
The weather has finally turned a little cooler and hopefully it will stay that way for awhile! It was nice to have the doors open today and actually feel a little chilly!
The photos above are from the trip I took with my friend Carol to Nashville last weekend. We had a great time -- it was nice to get away. But, I realized on the trip how much I rely on my husband these days. He can pick up when I need help and steps right in. I felt bad having to ask Carol to count my change out for me at a restaurant or to steer me in the right direction when we were going somewhere. She is a true friend let me tell you!
Things are gearing up rather quickly for the walk. It will be here in about 8 days. Our team, Team Athens has raised almost $10,000 and we will have met that total and more by the time the walk rolls around next weekend.
Next week, is another conference call with the advocacy group that I am on from the National Alzheimer's office. It is exciting to hear all that is happening out there and how engaged the whole group is in their work to help fight this disease. I know that several major news outlets are planning some stories about Alzheimer's in the coming months. That's about all I can say about that for now but I'll be able to report more later.
Ralph and I just returned from S.C. where we played golf at a state park. It was enjoyable but after a few holes I lose my concentration and it gets difficult. But I enjoy being outside and it was a beautiful day. Since my golf isn't that good to begin with I always say it is just another "walk in the park" for me.
Saturday, October 06, 2007
Lots of things have been swirling around in my head these days but getting them to this blog in a way that I can clearly communicate becomes another matter.
Since my son's birthday is coming up I have been thinking a lot about birthdays. How we celebrate them and other holidays is usually based on our upbringing. For instance, my father was pretty much an orphan growing up and at Christmas time he liked to have lots of little presents because as a child he didn't have any presents. We would wrap up everything and anything so he would have lots of presents. He was into fishing so we would buy individual lures and wrap them up and he would take his time opening each one and admiring them. It was fun to watch his amazement at each present. Our family always made a big deal of birthdays with family around to celebrate.
My husband celebrates birthdays in a whole different way. I don't ever recall him saying his family didn't celebrate birthdays and I have photos to show that they did indeed have family gatherings. When it comes to mine or his family he is pretty blase about it. When asked why I didn't get a birthday present it was because he couldn't find something "he" liked -- not what I might like but what he liked. Or I would recieve something that he wanted so he bought it for my birthday. Or if there was something particular I wanted I would show him in a catalog the exact item I wanted, he would do research on the internet or consumer reports and buy something he thought I would like better. When his mother was still living I was the one buying her birthday and Christmas presents -- I gave up on his brothers. At least I tried. When I realized that there was a pattern here I was determined that if we had children that birthdays would be special for them. And, he has pretty much gone along with it. He starts asking several months in advance of Alan's birthday what he wants or wants to be sure we have enough presents for Alan for Christmas. I guess that proves that some things anyway change when you have children!
We have a bake sale today for our Memory Walk. The Walk's in two weeks. I hope we have nice weather for it.
Since my son's birthday is coming up I have been thinking a lot about birthdays. How we celebrate them and other holidays is usually based on our upbringing. For instance, my father was pretty much an orphan growing up and at Christmas time he liked to have lots of little presents because as a child he didn't have any presents. We would wrap up everything and anything so he would have lots of presents. He was into fishing so we would buy individual lures and wrap them up and he would take his time opening each one and admiring them. It was fun to watch his amazement at each present. Our family always made a big deal of birthdays with family around to celebrate.
My husband celebrates birthdays in a whole different way. I don't ever recall him saying his family didn't celebrate birthdays and I have photos to show that they did indeed have family gatherings. When it comes to mine or his family he is pretty blase about it. When asked why I didn't get a birthday present it was because he couldn't find something "he" liked -- not what I might like but what he liked. Or I would recieve something that he wanted so he bought it for my birthday. Or if there was something particular I wanted I would show him in a catalog the exact item I wanted, he would do research on the internet or consumer reports and buy something he thought I would like better. When his mother was still living I was the one buying her birthday and Christmas presents -- I gave up on his brothers. At least I tried. When I realized that there was a pattern here I was determined that if we had children that birthdays would be special for them. And, he has pretty much gone along with it. He starts asking several months in advance of Alan's birthday what he wants or wants to be sure we have enough presents for Alan for Christmas. I guess that proves that some things anyway change when you have children!
We have a bake sale today for our Memory Walk. The Walk's in two weeks. I hope we have nice weather for it.
Thursday, October 04, 2007
I've rested some from the Nashville trip. My friend Carol was so great with me. She did all the driving, helped me manage crossing the street at the right time, and helped me make change when I needed it. I'm used to my husband helping me do simple stuff, so I forget that I actually need help sometimes!
I'll post some photos at some point. I just need to sift through all of them.
October always seems to be a month of reflection for me. I suppose it is because it is the month of my son's birthday. I've written on this blog before how I have written my son a letter on his birthday every year beginning on the day he was born. All through the year I save things for the letter and about September I start thinking about what I am really going to write.
Well, I have just a few weeks and the pressure is on! Not really, I enjoy doing it and now probably more than ever because I don't know if next year I will be able to. You never know about anything in life let alone when you have a crazy disease. All of the letters to date are in the safety deposit box and will be given to him at some point.
This year has been tough for Alan in many ways -- growing up isn't always fun. But he will look back on this year later and realize how much he learned and what it took to get where he is. I miss him a lot. It looks as if he will be working in Washington DC next year after graduation so at least he will be closer.
It's finally getting a little cooler here in the south. But we still need rain. There was an article in the paper this morning that if we don't get rain soon, we will be out of water by mid-December. That's a little frightening!
Thanks to all who have supported me with Memory Walk this year. The walk is in three weeks and if you would still like to donate you can at
https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=223554&lis=1&kntae223554=8E1450127EA74F88A5546C2F816E0116&supId=9079347
I'll post some photos at some point. I just need to sift through all of them.
October always seems to be a month of reflection for me. I suppose it is because it is the month of my son's birthday. I've written on this blog before how I have written my son a letter on his birthday every year beginning on the day he was born. All through the year I save things for the letter and about September I start thinking about what I am really going to write.
Well, I have just a few weeks and the pressure is on! Not really, I enjoy doing it and now probably more than ever because I don't know if next year I will be able to. You never know about anything in life let alone when you have a crazy disease. All of the letters to date are in the safety deposit box and will be given to him at some point.
This year has been tough for Alan in many ways -- growing up isn't always fun. But he will look back on this year later and realize how much he learned and what it took to get where he is. I miss him a lot. It looks as if he will be working in Washington DC next year after graduation so at least he will be closer.
It's finally getting a little cooler here in the south. But we still need rain. There was an article in the paper this morning that if we don't get rain soon, we will be out of water by mid-December. That's a little frightening!
Thanks to all who have supported me with Memory Walk this year. The walk is in three weeks and if you would still like to donate you can at
https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=223554&lis=1&kntae223554=8E1450127EA74F88A5546C2F816E0116&supId=9079347
Tuesday, October 02, 2007
Events
I've been gone for a few days with a girlfriend for a girls weekend away. We went to Nashville and had a great time. I'll write about that later -- I need to rest up!
But, I did want to bring a few things to the attention of many of you who read this blog on a regular basis.
Two colleagues of mine that serve with me on the Early Stage Advocacy Group are doing something pretty special. They are organizing an Early Stage Alzheimer's Conference in Los Angelese, CA on October 27th. The LA Times had an article about them this week and I have posted the link. (you will need to register for the LA Times but it is free). The link is http://www.latimes.com/news/printedition/california/la-me-dementia30sep30,1,6421737.story?page=2&coll=la-headlines-pe-california
For more information about the conference you can go to www.alzla.org/earlystageforum
It's only $25.00 for those with the disease and $75 for professional caregivers. If you are in the LA area and can attend this event I urge you to do so. Rich and Jay know what they are doing and I know that you would find it valuable.
Another event that is a few months away is the next Town Hall meeting put on by the National Alzheimer's Association. This Town Hall meeting is meant and designed for people that have Early On-Set Alzheimer's. The meeting is being held on December 1st in Spartanburg, SC. I attended one of these in Chicago and it was great. For more information on this meeting go to http://www.alz.org/townhall/ and register.
But, I did want to bring a few things to the attention of many of you who read this blog on a regular basis.
Two colleagues of mine that serve with me on the Early Stage Advocacy Group are doing something pretty special. They are organizing an Early Stage Alzheimer's Conference in Los Angelese, CA on October 27th. The LA Times had an article about them this week and I have posted the link. (you will need to register for the LA Times but it is free). The link is http://www.latimes.com/news/printedition/california/la-me-dementia30sep30,1,6421737.story?page=2&coll=la-headlines-pe-california
For more information about the conference you can go to www.alzla.org/earlystageforum
It's only $25.00 for those with the disease and $75 for professional caregivers. If you are in the LA area and can attend this event I urge you to do so. Rich and Jay know what they are doing and I know that you would find it valuable.
Another event that is a few months away is the next Town Hall meeting put on by the National Alzheimer's Association. This Town Hall meeting is meant and designed for people that have Early On-Set Alzheimer's. The meeting is being held on December 1st in Spartanburg, SC. I attended one of these in Chicago and it was great. For more information on this meeting go to http://www.alz.org/townhall/ and register.
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