Friends

I met an old friend for lunch this week. I've know her for about 10 years and we don't get together very often which is a shame. It had been about 8 or 9 months since we last saw each other and I was feeling pretty guilty about that. I hate that I let so much time slip by since we last saw each other. An occasional email and card were sent but it is so much better to get together. So this week we met and it was as if no time had passed at all. We picked up right where we left off and that is one of the great things about friends.

On the other hand, there are those friendships that you really have to work at. I'm not real sure why that is, but some take more effort than others. I've tried to evaluate whether those people are really friends or people that I know better than just acquaintances -- but I guess it doesn't really matter. If they are worth having in your life, they are worth working on.

Friends and family make the world go 'round -- don't forget that.

Cognitive Fatigue

Several months ago I wrote in this blog about a friend who had a terrible skiing accident in Denver. He suffered quite a few broken bones, lost sight in one of his eyes and took a pretty good blow to his head. As a result he has been through a long journey and still has a long way to go. He is out of the hospital now and into a rehabilitation situation. I spent some time today with his fiance who is back in Athens getting ready to graduate from UGA. I've been keeping up with his progress and realized early on that Brad was experiencing a lot of similar things that I experience as far as his brain injury is concerned. It will be a long time before they actually know the extent of Brad's brain injury but some of the problems he is experiencing now are all too familiar to me.

In talking with Lauren today we talked about how tired Brad gets and his doctor's have termed this as "cognitive fatigue" -- basically you brain gets tired. I have often told people that I get so tired and the only explanation I have for it is "it's like taking a final exam for eight hours and you are mentally exhausted". I guess now I can say it is "cognitive fatigue" --that sounds much better don't you think?

Some of Brad's other symptoms that are like mine are getting frustrated and agitated easily, not remembering the right words for things and dealing with emotion. I guess when the brain is "injured" however that might come about a lot of the same symptons occur. Lauren and I discussed how far the medical world has come on so many things but when it comes to the brain we seem to be miles behind.....or maybe it just seems that way. There are probably a lot of other people thinking the same thing about the diseases that they have.

Brad and his family are on a long road to recovery.....to me it is so much harder on the families and you all know how I feel about that. To me, that's the hardest part of having this disease, what it does to my family. My best to Brad, Lauren and the rest of his family -- they have certainly shown a great deal of love and support to him and he will need more as the days and months and years progress.

This and That

It's been a busy week with the golf tournament and all. I made it through my first day of "marshalling" a hole yesterday and have two more days of that. The weather didn't cooperate the first part of the day so we ran about two hours behind. All in all though I think it is goin pretty well. Because of the weather delay I was on the course much longer than I thought I would and toward the end I was making a lot of mental mistakes because I was tired. The mistakes weren't so bad that it messed up a player, just did some things that I wouldn't have necessarily done if I hadn't been so tired and "over extended" is probably a good word for it.

I've seen a lot of people volunteering at the tournament I haven't seen for a long time. Many of them I can't remember their names which is frustrating and I'm probably not remembering some of them at all. But at least I'm out there.

They've treated the volunteers extremely well with appreciation. They have also been feeding us every day and since we are a country club it is country club food, not just sandwiches. I've tried to stay on my diet the best I could but the food is pretty tempting. One thing they had one day this week was fried chicken. I haven't had fried chicken in probably well over a year because of my diet, but I had a piece this week and it was like heaven! I think I even had a dream about it that night. That's pretty pathetic isn't it?

Golf

One of the sponsors of our Memory Walk here in Athens last year was one of our hospitals. This week they are hosting the Nationwide Tour of the PGA. So, I decided to volunteer to work since they were good to us last year.

It's been fun watching the players. It makes you want to go play some more. I was hoping that by osmosis that at the end of the week I would play better, but that probably isn't going to happen! I've been working on the driving range for two days and tomorrow I will be working on a hole as the tournament begins. I suppose when Ralph retires in a few weeks, we'll be playing much more golf. I used to play pretty well, but my concentration isn't what it used to be and that means I don't play real well now. But at least I get out and get some exercise and enjoy the outdoors. As many people have said, golf is kind of like a walk in the park chasing a little white ball.

Tennis

I can't remember a time when I didn't play tennis. I taught myself very young. I've always been a tomboy and when my brothers wouldn't let me play baseball with them when I was young, I got a tennis racket and would hit tennis balls endlessly against a wall, near the baseball field so I could be close to my brothers and all the action that was going on. My mom used to tell the story that my brothers wouldn't let me play baseball with them because I would turn cartwheels in the outfield.

So I played a lot of tennis. Sports for girls in high school were virtually non-existent at that time so I never really played on a "team" until my adult life.

This all brings me to my tennis match today. My husband signed us up to play in this mixed doubles league. I have made it my practice to not play mixed doubles with my husband because it never seems to work out. I play to win -- he plays for fun. However, I said yes, and we started our league play today.

The first set was fine -- we lost 7-5 but it was very competitive. Then I lost it. My concentration was shot, I put my earplugs in to help block out some of the noise. I couldn't remember the score, I couldn't remember who was serving and I couldn't remember the last point. I started having panic attacks and couldn't breathe. I was so confused and so upset I started crying on the court before we started the second set. Our opponents didn't see this (I don't think) but suffice it to say we never won another game. I disappointed myself, but also my husband -- although he hasn't said that -- I just feel that.

I think I have now become a person who "doesn't play tennis" but rather a person that can go out and "hit the ball" for an hour or so and let it go at that.

So many other things that I have lost the ability to do, do not bother me as much as this. Tennis has been a part of my life for over 40 years. I've always been that self proclaimed "tennis snob" but I guess I won't be any longer. I'm sure my tennis playing friends reading this will be rejoicing at that fact.

We still have five matches to go in our league and I'm not sure how I'm going to get through them or if I will be able to do it at all.

My husband has commented from time to time that I was always defined by what I did -- mainly by the jobs I have had over the years. He worried that when I retired I would have a hard time, because I wouldn't be known for something. I've always had relatively high profile jobs and he really felt that is what defined me. It probably did sometimes. But, I have always defined myself in many ways and one thing I was always proud to say was that "I was a tennis player".

I guess I no longer am. And that makes me very sad.

A little slack

I know I have been a little slack lately in writing in this blog. Sometimes I just can't think of what to write without boring all of you. I've been working on a lot of projects and a few are coming to an end which will free up some of my time. I was involved with a banquet this past Tuesday night which took a little more out of me than I thought it would. But I have had a few days to rest up before I tackle something else.

I hope everyone has a great Easter weekend. The weather down here in the south is suppose to be 84 degrees over the weekend. Tennis and golf weather it is.

I'll try to do better in the coming weeks about posting here.

Spring

The pollen has certainly made its presence known in the south. The green stuff is all over the place and people are sneezing all the time. The beauty of the trees, flowers and plants though somehow make it worth it.

The spring makes me look forward to lots of things.....playing more tennis and golf and just being outside. It is getting more difficult for me to play tennis and golf though as my concentration is not what it used to be. But at least I can still get outside and get some fresh air. I'm also looking forward to my son coming home next month. He'll have completed his first year at law school at Stanford and he'll be home for a short break before heading back out to California for a summer job. I cherish the time I have with him.

And, this week is my 26th wedding anniversary. I hate that my husband doesn't have brighter days to look forward to knowing that my illness will certainly affect his life more than mine.

Speaking My Mind

For those of you that have known me for awhile you know that I have always been one to "say what was on my mind". Sometimes that got me into trouble, but for me, what else is new? So, what I am about to write will seem like a shock to you.

I'm having an increasingly difficult time saying the words that pop into my mind. I know exactly what I want to say but I can't put the words together to make it mean what I want it to mean. Yesterday, I was having a lunch meeting with some of the women on the Memory Walk committee for this year, and it seemed like every point I was trying to get across didn't come across the way I wanted it to. I think they were able to get some things I was saying, but after the meeting I felt really bad because I know I must have sounded like an idiot at times.

I'm also working with a national committee for a national Alzheimer's conference in Atlanta this fall. Our work includes going over abstracts for speakers. Since the committee is comprised of people from all over the country we are having conference calls to narrow the field of the speakers. I have a difficult time working over the phone anyway, but to have lots of different voices coming at me makes it extremely difficult. Then the lack of me being able to put sentences together to mean what I really want to say intimidates me so I end up being more silent than I feel I should be. (What a shocker that is!) I feel inadequate and very useless to the whole process when I can't contribute what I want.

I've said before that this disease makes me feel stupid and when I encounter days like yesterday I do feel stupid. I know that I'm not stupid, but it's hard not to feel that way.

Having come from a journalism background as a tv news reporter and writer for many different publications this becomes increasingly frustrating. Communications has also been something I thought I did pretty well. Since being diagnosed I have wanted to write a book, but I know that I couldn't do that without a lot of help. I haven't found that help yet, so I guess for now this journal is the best I can do.....and I'm not really sure how good that is when I go back and read some of the posts I've written. Thank you for reading anyway.

Reality

You know the feeling when you are on vacation and near the end of your vacation time you realize that it is going to be over soon and you'll be back to "reality". Even though I'm retired, I still feel that way when I go away. But since being back from Illinois I hadn't really thought that way until yesterday. That's when the old brain decided to act up more than usual and I suddenly come back to that dreaded feeling I get when I think about this disease. On good days I rarely think about it -- but when it rears its ugly head there's no denying it.

On another front for "reality" -- in about three weeks my husband retires. I know I have mentioned it before, but I think I have put it out of my mind. What a change for him and definitely a change for me. Having someone around the house all the time is going to definitely be hard. My husband has a hard time being in the house without noise. He has to have the television or the radio on. I can't function like that -- there is never a tv or radio or anything that produces noise on during the day when I am home alone. We will definitely be created a "no noise" room for me to escape to. It will certainly be different for everyone. My husband has worked for over 40 years in his job and he deserves to retire and we deserve to be able to do things while we still can. But an adjustment to the way we live our lives is definitely around the corner.

DNA

I'm participating in a study with the Medical College of Georgia. It basically is asking me and my blood family members for a couple of vials of blood for a study on genetic testing for Alzheimer's. I have two brothers -- both older than me. My oldest brother will not take part in the study. The excuses are pretty lame and it bothers me a great deal that he refuses to take part. It's just a couple of vials of blood and you have to answer a few questions.

I'm glad I don't need a kidney from him.

Back from Illinois

I returned home last night from my visit with my brothers and family. My cold got better, but I managed to give it to Alan. After he left me, he and his girlfriend Jennifer went to Lake Tahoe skiing. He called me from the slopes to tell me I had passed it along. I'm sure I told him "it is a nice thing to share". Mind you -- he still had the energy to ski!

It was nice visiting everyone -- but of course it is always nice to get home as well. I certainly couldn't have done that trip alone -- I think those days are over for me -- at least maneuvering my way around Chicago on the buses and the EL. Alan and I managed to see some friends, go to the Art Institute of Chicago, the Adler Planetarium and Navy Pier. It was cold and windy -- what else do you get in Chicago?

I wish my family lived closer or vice versa. I always hated that Alan really never got to know his cousins very well. Being an only child it would have been nice for him.