The heat has continued here in the south. But, it looks as if it is going to cool down to the lower or mid 80's by the weekend. Alan and I have been playing some golf, I'm getting pretty frustrated with it all. Can't seem to find my swing. But, I guess I just have to play through it.
It has been nice to have Alan home to help me run errands and the like. It is hard for me to do on my own sometimes, and having someone with me really helps. I'm going to miss that when he is gone -- he's spoiling me by being home!
We still have lots we want to do this summer and although it is only the middle of June it seems like there won't be enough summer to get everything done. I guess that always seems to be the case though doesn't it?
Friday, June 17, 2005
Friday, June 10, 2005
Hot Week
Well, we jumped from spring to mid summer with the temperatures this week. It has been in the mid 80's and pretty humid. But, despite the heat Alan and I managed to get in some golf and tennis. I keep thinking it is going to help me shed these extra pounds, but so far, I've just sweated a lot!
On Monday, I went to Atlanta to do an interview/q&a type thing with Col. Nimrod MacNair (Mac) and Dr. Neil Shulman (best known for being Doc Hollywood, being portrayed by Michael J. Fox in the movie -- he is also an author). Neil's mother passed away a few months ago with Alzheimer's and Mac's wife suffers from the disease. In many discussions over the last few months with these gentlemen and the director of the Alzheimer's Association, we realized it is important to talk about the disease in "not so frightening" terms -- as Neil uses humor as a technique in teaching medicine as well as his writings. So, we had some fun and taped about an hour's worth of material. The Alzheimer's Assn. is hopefully going to be able to edit in some form that it will be useful to those suffering from the disease as well as those that are caring for their loved ones.
Mac is also organizing a fund raiser for Alzheimer's in the community he is currently living in. Heather Whitestone (Miss America 1995 (I think) who is hearing impaired) is going to be the featured speaker. She talks about overcoming diversity in her speeches. She and Mac have done some other motivational type programs in the past.
I know I haven't posted for awhile but I wanted to put something down. It seems like I am staying busy -- it is nice to be able to spend some time with Alan before he goes to California. His girlfriend, Jennifer, is in Taiwan for a month. She has been sending some beautiful pictures back as well as an account of her trip. Her parents are from Taiwan and she hasn't been over to visit her extended family for about six years. I'm sure she is seeing a lot of new things. What a wonderful opportunity.
On Monday, I went to Atlanta to do an interview/q&a type thing with Col. Nimrod MacNair (Mac) and Dr. Neil Shulman (best known for being Doc Hollywood, being portrayed by Michael J. Fox in the movie -- he is also an author). Neil's mother passed away a few months ago with Alzheimer's and Mac's wife suffers from the disease. In many discussions over the last few months with these gentlemen and the director of the Alzheimer's Association, we realized it is important to talk about the disease in "not so frightening" terms -- as Neil uses humor as a technique in teaching medicine as well as his writings. So, we had some fun and taped about an hour's worth of material. The Alzheimer's Assn. is hopefully going to be able to edit in some form that it will be useful to those suffering from the disease as well as those that are caring for their loved ones.
Mac is also organizing a fund raiser for Alzheimer's in the community he is currently living in. Heather Whitestone (Miss America 1995 (I think) who is hearing impaired) is going to be the featured speaker. She talks about overcoming diversity in her speeches. She and Mac have done some other motivational type programs in the past.
I know I haven't posted for awhile but I wanted to put something down. It seems like I am staying busy -- it is nice to be able to spend some time with Alan before he goes to California. His girlfriend, Jennifer, is in Taiwan for a month. She has been sending some beautiful pictures back as well as an account of her trip. Her parents are from Taiwan and she hasn't been over to visit her extended family for about six years. I'm sure she is seeing a lot of new things. What a wonderful opportunity.
Thursday, June 02, 2005
Staying Busy and Not Staying Busy
I feel like I am staying busy all the time, but then when I go back and look at what I did when I said I was "busy" it doesn't amount to much. The fatigue seems to be getting to me more and more -- just trying to concentrate so much and stay on task. I think that is why I sometimes don't do things because it just takes too much effort.
I have had some bad days recently. I forgot how to get home one day and had to call my husband for help. I get more confused around the house and feel as if I am forgetting more things. I try to stay as focused as I can.
I have enjoyed being with Alan this summer although our time is limited with him working in Atlanta a few days a week. But he still will "hang out" with me -- we went to play golf a few times last week and we generally enjoy each other's company. I guess I should speak for myself -- I enjoy his company anyway!
He is anxiously awaiting his trip to California and steadily looking at all the things he has to work out. His girlfriend is in Taiwan for a month visiting her family and when she returns she too will be looking at what needs to be done for her move to the west coast.
It has been raining here for days and that gets to be a little depressing at times. But, hopefully, the sun will come out tomorrow.
I have had some bad days recently. I forgot how to get home one day and had to call my husband for help. I get more confused around the house and feel as if I am forgetting more things. I try to stay as focused as I can.
I have enjoyed being with Alan this summer although our time is limited with him working in Atlanta a few days a week. But he still will "hang out" with me -- we went to play golf a few times last week and we generally enjoy each other's company. I guess I should speak for myself -- I enjoy his company anyway!
He is anxiously awaiting his trip to California and steadily looking at all the things he has to work out. His girlfriend is in Taiwan for a month visiting her family and when she returns she too will be looking at what needs to be done for her move to the west coast.
It has been raining here for days and that gets to be a little depressing at times. But, hopefully, the sun will come out tomorrow.
Friday, May 20, 2005
Lots to Say
This is going to be a long post so if you don't have a few minutes I would come back to this!
Yesterday, my son took me to a conference on Alzheimer's Education. The speaker was Joanne Koenig Coste and you have probably heard me speak about her book Learning To Speak Alzheimers. She was a terrific speaker and had some great points about Alzheimer's. If you are dealing with Alzheimers please go out and buy this book -- it is worth every penny. When I speak I usually take this book with me and end up giving it to someone at my talks -- it brings this disease down to a patient's perspective and I obviously can't say enough about it.
Yesterday, I also recieved word from the Social Security office telling me that I wasn't disabled. Tell that to my brain! They basically said that I need to get myself back to work -- which I guess we will appeal in time. How can it be that three doctors have said I can't work and I take a test from a grad student at UGA and it is deemed that I can work. That's our government at its best.
I haven't written about this experience or really mentioned it to many people but my son thought I should write about it since this journal is really for that purpose. It has often been said that Alzheimer's is a lonely disease -- and it is kind of hard to explain that. And, I have said that you certainly know who your friends are as many drop you like a hot potato when they find out that you have Alzheimer's. The phone stops ringing and many write you off. When people find out about it they literally stop talking to you as if you are stupid and can't understand what they are saying. They don't realize that you still have feelings. I say this only to preface an incident that occured a couple of weeks ago. I attended a luncheon that was honoring a friend of mine. I didn't know any of the women sitting at my table, but I did know several others that were at the luncheon. They came up and spoke to me and we chatted for awhile. Those at the table were good at making small talk since none of us really knew each other. Then, a person seated nearby made a comment that she knew who I was -- I was that lady that had to stop working because of Alzheimer's. I replied that "yes, I was". At that moment, everyone at the table and near me stopped talking to me -- it was as if I disappeared in a puff of smoke. It made me so mad. Luckily the program started shortly after that and it diverted my attention......if someone said I had cancer or heart disease, I doubt they would have stopped talking to me -- it's a shame really. Now you can understand why my real friends are important to me -- you know who you are and thank you for standing by me!
On a lighter note, I haven't really mentioned much about my trip to Illinois to see my brothers and friends. It was a great trip -- I realize how I can't really travel by myself anymore though so it was great to have Alan along with me. We always laugh alot when we are together and that is so refreshing. My world is a lot smaller now and having those around me that can laugh with me is a joy. I got to catch up with an old friend of mine that used to be a client. We don't see each other often enough, but he is a great guy and has been a friend for 30 years. Lunch once a year doesn't seem like enough but we do stay in contact with each other and it is so nice that he still cares about me and I care so much about him. We have been great friends over the years. Thanks Dave!
My friends Pody and Rick and their daughter Rachel have been friends for just about as long. We always have a great time together -- Pody actually cooked a meal for us and for Pody that is saying a lot -- her claim to fame is that she can't make jello so her cooking always brings us a chuckle! But the lunch was great and I think after all these years she has finally learned to cook -- just kidding Pody. Their daughter Rachel is an attorney in downtown Chicago and she and Alan had a lot to talk about. We enjoy their company -- I wish we lived closer but they have been great to keep in touch with us.
My family is growing with great neices and nephews. It's fun to be around the little ones and see their moms with the children. Thankfully, the weather was nice for a great big family picnic and the children got to play outside. I'm not sure with all the noise they make that I could have taken having them all in the house with us -- but they seem to be doing well and I wish I could see them more often --they grow up fast.
I've probably written enough for this post. Sorry it was so long, but I thought while I was on a roll I would keep going!
Yesterday, my son took me to a conference on Alzheimer's Education. The speaker was Joanne Koenig Coste and you have probably heard me speak about her book Learning To Speak Alzheimers. She was a terrific speaker and had some great points about Alzheimer's. If you are dealing with Alzheimers please go out and buy this book -- it is worth every penny. When I speak I usually take this book with me and end up giving it to someone at my talks -- it brings this disease down to a patient's perspective and I obviously can't say enough about it.
Yesterday, I also recieved word from the Social Security office telling me that I wasn't disabled. Tell that to my brain! They basically said that I need to get myself back to work -- which I guess we will appeal in time. How can it be that three doctors have said I can't work and I take a test from a grad student at UGA and it is deemed that I can work. That's our government at its best.
I haven't written about this experience or really mentioned it to many people but my son thought I should write about it since this journal is really for that purpose. It has often been said that Alzheimer's is a lonely disease -- and it is kind of hard to explain that. And, I have said that you certainly know who your friends are as many drop you like a hot potato when they find out that you have Alzheimer's. The phone stops ringing and many write you off. When people find out about it they literally stop talking to you as if you are stupid and can't understand what they are saying. They don't realize that you still have feelings. I say this only to preface an incident that occured a couple of weeks ago. I attended a luncheon that was honoring a friend of mine. I didn't know any of the women sitting at my table, but I did know several others that were at the luncheon. They came up and spoke to me and we chatted for awhile. Those at the table were good at making small talk since none of us really knew each other. Then, a person seated nearby made a comment that she knew who I was -- I was that lady that had to stop working because of Alzheimer's. I replied that "yes, I was". At that moment, everyone at the table and near me stopped talking to me -- it was as if I disappeared in a puff of smoke. It made me so mad. Luckily the program started shortly after that and it diverted my attention......if someone said I had cancer or heart disease, I doubt they would have stopped talking to me -- it's a shame really. Now you can understand why my real friends are important to me -- you know who you are and thank you for standing by me!
On a lighter note, I haven't really mentioned much about my trip to Illinois to see my brothers and friends. It was a great trip -- I realize how I can't really travel by myself anymore though so it was great to have Alan along with me. We always laugh alot when we are together and that is so refreshing. My world is a lot smaller now and having those around me that can laugh with me is a joy. I got to catch up with an old friend of mine that used to be a client. We don't see each other often enough, but he is a great guy and has been a friend for 30 years. Lunch once a year doesn't seem like enough but we do stay in contact with each other and it is so nice that he still cares about me and I care so much about him. We have been great friends over the years. Thanks Dave!
My friends Pody and Rick and their daughter Rachel have been friends for just about as long. We always have a great time together -- Pody actually cooked a meal for us and for Pody that is saying a lot -- her claim to fame is that she can't make jello so her cooking always brings us a chuckle! But the lunch was great and I think after all these years she has finally learned to cook -- just kidding Pody. Their daughter Rachel is an attorney in downtown Chicago and she and Alan had a lot to talk about. We enjoy their company -- I wish we lived closer but they have been great to keep in touch with us.
My family is growing with great neices and nephews. It's fun to be around the little ones and see their moms with the children. Thankfully, the weather was nice for a great big family picnic and the children got to play outside. I'm not sure with all the noise they make that I could have taken having them all in the house with us -- but they seem to be doing well and I wish I could see them more often --they grow up fast.
I've probably written enough for this post. Sorry it was so long, but I thought while I was on a roll I would keep going!
Wednesday, May 18, 2005
The past week
My son and I just returned from seeing my family in Illinois. It is always a lot of fun and we laugh a lot. I needed that. I sometimes get the "giggles" and can't stop laughing. When my son starts to laugh that way it is really hard. We had a great time, but as usual, it is always nice to get home too. The trips take a lot more out of me now, because I tire so easily. And, of course, my routine gets shot to hell so that doesn't make it easier. But time with my family and friends is important and I need to do it when I can.
Tomorrow my son and I are going to Greenville SC to an Alzheimer's meeting. The lady that wrote the book "Learning to Speak Alzheimer's" is one of the speakers and her book is great -- I would recommend it to anyone dealing with this disease.
I have lots more to post but it will have to wait until another time.
Tomorrow my son and I are going to Greenville SC to an Alzheimer's meeting. The lady that wrote the book "Learning to Speak Alzheimer's" is one of the speakers and her book is great -- I would recommend it to anyone dealing with this disease.
I have lots more to post but it will have to wait until another time.
Wednesday, May 11, 2005
Another busy week
I finally got caught up with rest and then tomorrow my son and I are going to Illinois to see my family. It has been a long time since we last visited. I can't even remember -- but it will be nice to catchup with all my family and my friends that still live in the area.
When we return Alan and I are going to Greenville SC to an educational conference on Alzheimer's. The lady that wrote the book "Learning to Speak Alzheimer's" is the featured speaker. Her book is great and I look forward to meeting her.
I know our trip will be tiring. It is harder for me to travel because I get worn out so quickly. Luckily my family knows this and allows "rest time" for me. But I am anxious to see everyone.
More when I return next week.
When we return Alan and I are going to Greenville SC to an educational conference on Alzheimer's. The lady that wrote the book "Learning to Speak Alzheimer's" is the featured speaker. Her book is great and I look forward to meeting her.
I know our trip will be tiring. It is harder for me to travel because I get worn out so quickly. Luckily my family knows this and allows "rest time" for me. But I am anxious to see everyone.
More when I return next week.
Friday, May 06, 2005
A big Weekend
My son graduates with his Masters in Public Policy tomorrow from Georgia Tech. What a nice Mother's Day present! I'm so proud of him. I'm glad he'll be home for a few months so I can spend some time with him. Yes, he'll be working a few days a week, but every summer he has not only worked but been taking classes or doing research. This will be the only summer for a few more years that he will just be working. Hopefully, we can go to those baseball games, play golf, tennis or just hang out. By the time August rolls around he will be ready to leave for the West Coast and start a new chapter in his life.
Happy Mother's Day to all those wonderful moms out there!
Happy Mother's Day to all those wonderful moms out there!
Wednesday, May 04, 2005
Washington DC
My husband and I just returned from a Public Policy Forum on Alzheimer's in Washington DC. I was so glad to see so many people with Early On Set Alzheimer's there -- it is nice to know that you are not alone. I think we all know it, but it is nice to actually see and talk to others that have this awful disease.
The Alzheimer's Association asked me to speak at a forum on Early On Set and I am so happy that the National Office is looking into the ramifications of those diagnosed early. We have our own set of problems and I am glad to have been a part of it. There was a lot of energy in the room and I do hope that we can find some solutions to some of our problems. Thank you for all you are doing.
I was disappointed, however, to sit in on the research session only to find that I didn't really hear anything new on the horizon. The last policy session I went to and listen to those from the NIH and National Institute on Aging, I was impressed with all the strides that had been made. We all want that miracle drug if you will, but it is a long way away.
The conference took a lot out of me. I've been home for a day now and just found the words to sit down and right something in this blog. I get tired so easily and it is just harder for me to try to be attentive for three days! I did manage a nap or two while I was there, but it is extremely exhausting to me -- takes me too long to recover!
Thanks to all those I met in Washington for all you do and in helping our cause. The conference was certainly filled with compassionate people and we need to keep the fight going.
The Alzheimer's Association asked me to speak at a forum on Early On Set and I am so happy that the National Office is looking into the ramifications of those diagnosed early. We have our own set of problems and I am glad to have been a part of it. There was a lot of energy in the room and I do hope that we can find some solutions to some of our problems. Thank you for all you are doing.
I was disappointed, however, to sit in on the research session only to find that I didn't really hear anything new on the horizon. The last policy session I went to and listen to those from the NIH and National Institute on Aging, I was impressed with all the strides that had been made. We all want that miracle drug if you will, but it is a long way away.
The conference took a lot out of me. I've been home for a day now and just found the words to sit down and right something in this blog. I get tired so easily and it is just harder for me to try to be attentive for three days! I did manage a nap or two while I was there, but it is extremely exhausting to me -- takes me too long to recover!
Thanks to all those I met in Washington for all you do and in helping our cause. The conference was certainly filled with compassionate people and we need to keep the fight going.
Saturday, April 23, 2005
The Week
This has been a busy week -- too busy for me. After my awful testing on Monday I was pretty run down and as a result didn't have a great week.
Next weekend my husband and I will be heading to Washington DC for the National Public Policy Forum for Alzheimer's. We went two years ago and it was a great event -- although depressing because it hits you smack in the face as to what we are facing -- not that you don't know that -- but when you have alot of people in one conference talking about it -- it can become overwhelming. But in the long run it does us good to hear what is going on and to catch up on the latest research. I've been told that about 20% of the people that are at the conference will be Early-On Set people such as myself. That will be good for me.
My son made his decsion about law school this week --he is going to become a "surfer dude" and go to Stanford in California. I'm glad the decision is behind him and I think he will be happy there. Selfishly, I was hoping he would pick Harvard because it is closer to us, but we'll just have to be content in visiting him in California -- which isn't all that bad when you think about it!
Next weekend my husband and I will be heading to Washington DC for the National Public Policy Forum for Alzheimer's. We went two years ago and it was a great event -- although depressing because it hits you smack in the face as to what we are facing -- not that you don't know that -- but when you have alot of people in one conference talking about it -- it can become overwhelming. But in the long run it does us good to hear what is going on and to catch up on the latest research. I've been told that about 20% of the people that are at the conference will be Early-On Set people such as myself. That will be good for me.
My son made his decsion about law school this week --he is going to become a "surfer dude" and go to Stanford in California. I'm glad the decision is behind him and I think he will be happy there. Selfishly, I was hoping he would pick Harvard because it is closer to us, but we'll just have to be content in visiting him in California -- which isn't all that bad when you think about it!
Wednesday, April 20, 2005
They probably just think I'm stupid
For quite a few months now, I have been in an "exchange" with the Social Security office to try to collect disability. I've been rejected a couple of times, which, we've been told is pretty normal for the Social Security office. But, they decided to send me for some neuro-psychological tests this past Monday I guess to assess "my disability". I've had these tests before and they are difficult but I had to go......so I went.
The tests were suppose to last three hours. They began at 10:00 a.m. and didn't end until five hours later! We had no lunch break and I had one rest room break. They kept asking me if I wanted a rest room break but I settled for one during the five hours.
Now, think about it, it is very difficult for anyone to sit and take tests for five hours, let alone someone that has Alzheimer's. The last time I took these tests (for my original diagnosis) it was done over two sessions both lasting about two hours.
The tests I had done Monday were done at the UGA Psychology clinic and were administered by a grad student. (My nephew is studying for his doctorate in psychology so I kept envisioning him sitting across the table from me.) The sessions were videotaped and we were also in a room that had a two way mirror for observation. I felt like I was in a police precinct (although I have never been in one, it looks like those interrogation rooms from television).
The tests started off with me telling them a little about my condition and the things I could not do. Then of course, most of the tests were "things I can no longer do" -- like math for example. I just can't do that sort of thing -- in my head or on paper. It was all being timed so I didn't get many answers right. After doing a bunch of memory tests and sequencing tests they then moved on to vocabulary and general knowledge questions. I must admit that after about two and a half hours I probably couldn't have told you my name at that point, let alone who Cleopatra was or who the President of the United States was during the Civil War. Many times when I confessed to not knowing I was prompted for a guess. I'm sure they thought I was being a smart a** but I wasn't.....I was tired and cranky and just couldn't go on.
I'm not stupid......but how do they know I'm not stupid? These tests are designed to try to find me employment.....I can see them coming back and saying she can work...."she's just stupid". Alzheimer's certainly makes you feel stupid and many of us fight that all the time. We have to keep reminding ourselves that it isn't us --- it's the Alzheimer's. When you're tired it is hard to distinguish the two.
I was so exhausted when I got home (and I'm lucky I could get home on my own), that I fell asleep in the chair, couldn't carry on a conversation with my husband, went to bed at 7:30 and slept until 6 the next morning. The next day I was still dragging and not thinking real clearly.
I was talking with someone at the Alzheimer's Association in Atlanta yesterday and relaying this information to them. When I told her that "they probably just think I'm stupid".....she said that sounded like a title to a book. And it could be.
The tests were suppose to last three hours. They began at 10:00 a.m. and didn't end until five hours later! We had no lunch break and I had one rest room break. They kept asking me if I wanted a rest room break but I settled for one during the five hours.
Now, think about it, it is very difficult for anyone to sit and take tests for five hours, let alone someone that has Alzheimer's. The last time I took these tests (for my original diagnosis) it was done over two sessions both lasting about two hours.
The tests I had done Monday were done at the UGA Psychology clinic and were administered by a grad student. (My nephew is studying for his doctorate in psychology so I kept envisioning him sitting across the table from me.) The sessions were videotaped and we were also in a room that had a two way mirror for observation. I felt like I was in a police precinct (although I have never been in one, it looks like those interrogation rooms from television).
The tests started off with me telling them a little about my condition and the things I could not do. Then of course, most of the tests were "things I can no longer do" -- like math for example. I just can't do that sort of thing -- in my head or on paper. It was all being timed so I didn't get many answers right. After doing a bunch of memory tests and sequencing tests they then moved on to vocabulary and general knowledge questions. I must admit that after about two and a half hours I probably couldn't have told you my name at that point, let alone who Cleopatra was or who the President of the United States was during the Civil War. Many times when I confessed to not knowing I was prompted for a guess. I'm sure they thought I was being a smart a** but I wasn't.....I was tired and cranky and just couldn't go on.
I'm not stupid......but how do they know I'm not stupid? These tests are designed to try to find me employment.....I can see them coming back and saying she can work...."she's just stupid". Alzheimer's certainly makes you feel stupid and many of us fight that all the time. We have to keep reminding ourselves that it isn't us --- it's the Alzheimer's. When you're tired it is hard to distinguish the two.
I was so exhausted when I got home (and I'm lucky I could get home on my own), that I fell asleep in the chair, couldn't carry on a conversation with my husband, went to bed at 7:30 and slept until 6 the next morning. The next day I was still dragging and not thinking real clearly.
I was talking with someone at the Alzheimer's Association in Atlanta yesterday and relaying this information to them. When I told her that "they probably just think I'm stupid".....she said that sounded like a title to a book. And it could be.
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