On Sunday night we had a going away party for my son and his girlfriend. It was so nice that everyone showed up and we had a good time. I was really exhausted after it though. On Monday Alan and I went out to play golf. I've been having a problem with my right foot -- the same one I broke awhile back. And, it was hurting so bad when I got home that I decided it was finally time to go see the doctor. To make a long story short, I am now in a "boot" and go back in ten days to see what is going on. It appears that I have a stress fracture in my foot and a bone spur that is rubbing up against my Achilles Tendon. None of this is good. We'll see what happens after I go back to the doctor.
Alan is getting all of his stuff ready for Stanford. He'll leave next Tuesday. I have been dreading this day -- and it will be here before I know it.
I go back to the neurologist on Monday. I haven't been in awhile and I can't imagine he is going to tell me a lot -- wish there were some new "cures" out there!
Our computer has been sick for a few days and it hasn't allowed me to get to the internet or my email. Since it is difficult for me to talk on the phone my computer is kind of like my "lifeline" if you will. I can go back and re-read emails and take me time composing as that is difficult sometimes. Luckily, my husband was able to fix it and now I feel "back to normal".
Friday, August 19, 2005
Thursday, August 11, 2005
A Bad Day When You Least Expect It
Today started out a good day. Today was our Memory Walk Captain's Luncheon. Outback Steakhouse provided lunch for our committee and for those who are going to have a team in this year's Memory Walk. I didn't have to do much for it -- I got some door prizes together and helped with whatever I could. I wasn't even speaking -- I did last year, but I thought they needed to hear someone else speak this year.
The lunch went well but in the end I realized how stressed I was. I shouldn't have been.....it was just a lunch. And when I think that I used to be able to plan and carry out functions for several thousand people at a time it's a little unnerving.
When I was driving home from the luncheon I noticed that my reaction time was off. Not bad, but it seemed like I was about a second or two off from what I should have been. I never thought too much about it at the time.
Then when my husband came home we went out to play tennis. And, I noticed my reaction time on the court was really off. Now sometimes I just don't go race down a shot out of sheer laziness but tonight, my brain didn't even tell my body to run for the ball until after it had bounced -- and then it was way too late. I've had a few problems before playing tennis but nothing like that. I hated it because there was absolutely nothing I could do about it -- the brain just didn't work.
I don't know what else to say!
The lunch went well but in the end I realized how stressed I was. I shouldn't have been.....it was just a lunch. And when I think that I used to be able to plan and carry out functions for several thousand people at a time it's a little unnerving.
When I was driving home from the luncheon I noticed that my reaction time was off. Not bad, but it seemed like I was about a second or two off from what I should have been. I never thought too much about it at the time.
Then when my husband came home we went out to play tennis. And, I noticed my reaction time on the court was really off. Now sometimes I just don't go race down a shot out of sheer laziness but tonight, my brain didn't even tell my body to run for the ball until after it had bounced -- and then it was way too late. I've had a few problems before playing tennis but nothing like that. I hated it because there was absolutely nothing I could do about it -- the brain just didn't work.
I don't know what else to say!
Thursday, July 28, 2005
Sorry
it has been so long since I posted. I have been waiting for my son to "fix" my blog by being able to add comments but he said he had a problem doing it --- that's why it hasn't been done. I asked him to ask his girlfriend to do it so it might get done -- Ithink she knows more about that stuff anyway -- so hopefully before they go off to California we'll get it done. However, as I write this I see that there might be a place for comments so he might have done it and now it works. After I push the button to "publish this" I guess we'll see if a comments area comes up. If not, stay tuned!
We went white water rafting a few weeks ago. I was dreading it because it was class IV and V rapids. I've never done anything like that before (highest I've ever gone is Class III and only one or two of them) -- but the trip wasn't too bad. We never fell out of the raft and that was a good thing. The bad thing was that I hurt in places I didn't know you could hurt the next day.
Then we took a train ride through the Blue Ridge Mountain area. It was a three hour trip and went through Tennessee and Georgia. We had done our rafting in South Carolina so we got around a bit those few days!
Today Alan and I went to a Braves games despite the heat we are having -- but it wasn't too bad. After about an hour and a half we were in the shade so we survived and the Braves won.
Last weekend Alan his dad and Jennifer painted his room. Then we had new carpet put down. The house was a mess for several days and it really took its toll on me. Things were not in the right spot and I got really confused. Alan's stuff was all over the house and it was so confusing to me that I had a few pretty rocky days until it was finished. Now the house is somewhat back to normal and I am feeling better. I was close to having severe panic attacks with everything strewn all over the house.
I have lots of Alzheimer's stuff to go over with you -- but need to save it for the next post. Thanks to all of you that read this and give me your support -- it means a lot to me.
We went white water rafting a few weeks ago. I was dreading it because it was class IV and V rapids. I've never done anything like that before (highest I've ever gone is Class III and only one or two of them) -- but the trip wasn't too bad. We never fell out of the raft and that was a good thing. The bad thing was that I hurt in places I didn't know you could hurt the next day.
Then we took a train ride through the Blue Ridge Mountain area. It was a three hour trip and went through Tennessee and Georgia. We had done our rafting in South Carolina so we got around a bit those few days!
Today Alan and I went to a Braves games despite the heat we are having -- but it wasn't too bad. After about an hour and a half we were in the shade so we survived and the Braves won.
Last weekend Alan his dad and Jennifer painted his room. Then we had new carpet put down. The house was a mess for several days and it really took its toll on me. Things were not in the right spot and I got really confused. Alan's stuff was all over the house and it was so confusing to me that I had a few pretty rocky days until it was finished. Now the house is somewhat back to normal and I am feeling better. I was close to having severe panic attacks with everything strewn all over the house.
I have lots of Alzheimer's stuff to go over with you -- but need to save it for the next post. Thanks to all of you that read this and give me your support -- it means a lot to me.
Monday, July 11, 2005
Vacation's over
Well we made it back from Hilton Head. The weather was hot but we still managed some tennis, swimming (pool and ocean) and bicycling around the island. Alan and Jennifer also ventured into the waters with a kayak.
It was nice to get away but it is always nice to get home as well. The trip was much harder for me than I thought it was going to be. And mostly, because things were new to me. We stayed in a villa for the week and of course, everything was different. I found it extemely difficult to work in the kitchen -- I had to ask for help several times. I was just so confused because I didn't know where things were and where to put them back when I got them out, etc. etc. Also, Hilton Head was a lot busier in general than we had remembered it. There were a lot more people and a couple of times, I found myself very close to a panic attack because there were so many people around and I was in a strange place.
Sometimes when we go on vacation I like to venture out on my own. But I couldn't do that either on foot, bike or by car because I was so confused by my surroundings. I hate it when that happens! Luckily, my family was by my side and didn't leave me alone too often.
We have a few more two and three day trips left for the summer but they shouldn't be too bad. Then, we'll be packing Alan up for the drive to California. What fun that will be.
It was nice to get away but it is always nice to get home as well. The trip was much harder for me than I thought it was going to be. And mostly, because things were new to me. We stayed in a villa for the week and of course, everything was different. I found it extemely difficult to work in the kitchen -- I had to ask for help several times. I was just so confused because I didn't know where things were and where to put them back when I got them out, etc. etc. Also, Hilton Head was a lot busier in general than we had remembered it. There were a lot more people and a couple of times, I found myself very close to a panic attack because there were so many people around and I was in a strange place.
Sometimes when we go on vacation I like to venture out on my own. But I couldn't do that either on foot, bike or by car because I was so confused by my surroundings. I hate it when that happens! Luckily, my family was by my side and didn't leave me alone too often.
We have a few more two and three day trips left for the summer but they shouldn't be too bad. Then, we'll be packing Alan up for the drive to California. What fun that will be.
Wednesday, June 29, 2005
Vacation
I didn't realize it had been so long since I posted here. Sorry about that -- not really much happening I guess. I've been trying to stay ahead of the curve with the Memory Walk stuff and so far I've been doing o.k. with it. We are only a few months away from it and we still have lots to do.
We'll be vacationing next week at Hilton Head and I'm looking forward to getting away. It has been at least 10 years since we have been down there. I don't really know why I should be looking forward to it as much as I am -- since I used to look forward to vacations to get away from work! I guess I'm interested in a change of scenery.
Alan has promised he is going to redo this blog site before he leaves for Stanford. He is going to add a place you can add comments to it. I'm not sure that is a good thing or not! Sometimes the comments might not be too good -- in fact, a few weeks ago a lady told me that "the only reason you speak out about your Alzheimer's is so that people will feel sorry for you". That upset me terribly and I haven't told anyone about that until now. I hope that isn't what everyone thinks because if it is I need to stop now!
We'll be vacationing next week at Hilton Head and I'm looking forward to getting away. It has been at least 10 years since we have been down there. I don't really know why I should be looking forward to it as much as I am -- since I used to look forward to vacations to get away from work! I guess I'm interested in a change of scenery.
Alan has promised he is going to redo this blog site before he leaves for Stanford. He is going to add a place you can add comments to it. I'm not sure that is a good thing or not! Sometimes the comments might not be too good -- in fact, a few weeks ago a lady told me that "the only reason you speak out about your Alzheimer's is so that people will feel sorry for you". That upset me terribly and I haven't told anyone about that until now. I hope that isn't what everyone thinks because if it is I need to stop now!
Friday, June 17, 2005
Summer
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?
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 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.
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