Friday, August 26, 2016

Two months

has been a long time to post.  I have gotten a lot of comments and emails lately about my journey with this disease so I will try to go back a little to give some perspective to it and answer some of the questions people have asked.

Question 1 -- What were your first symptoms?
I began having problems at work -- I was the manager of a 2,000 seat performing arts theatre and found that after 8 years I had problems doing familiar tasks, multi-tasking, trouble with working with numbers and dealing with season ticket holders and staff.  I first thought it was stress and being tired but I finally went to see a doctor when my symptoms got worse and I found myself somewhere and didn't know where I was or how I had gotten there.

Question 2 - What kind of tests did you have to determine your diagnosis?
I had about 8 months of testing which including all the usual lab tests, blood work. Then I had a spinal tap and that showed a build up of tau in my brain (which cause the tangles in your brain with this disease) and also a gene that carried the Alzheimer's disease.  I also did intense neuropsychological testing.  I was "lucky" from the standpoint that I was diagnosed at an extreme early stage of the disease.

Question 3 - What kind of medicine are you on?
I take Exelon (patch) and Namenda.  I have some other medicines I take that are off label that help with some of the symptoms.

Question 4 - How are you still so functional?
I get this question a lot.  I know many people that have been diagnosed longer than I have and are more functional than I am.  As I said, this was caught early in the disease process and I personally think that makes a difference -- although medical personnel may disagree -- that is only my take on it.  I work at it -- try to stay active both physically and mentally.  There are many many things I cannot do and I won't go into them but I struggle just like everyone else.  It isn't easy -- but I do the best that I can.

It has taken a lot of effort to put down on paper what I have just written.  I used to do this with such ease and now after many hours thinking this through and writing it out several times (with help) I was able to get it this far. 

I appreciate everyone's comments and only hope that if you or someone you know is dealing with this disease that you get help somewhere -- there are lots of resources out there. I work closely with the Alzheimer's Association but there are others as well.  Check them out on the web and get some advice -- it doesn't cost anything to do some research and ask a few questions.  It has helped me and helped my family.

On a lighter note -- we are expecting our first grand child this fall -- and I am hoping that I will be able to enjoy the little one for a long time.

Thursday, May 26, 2016

Ups and Downs

We were delighted to learn on Mother's Day that our son and his lovely wife are going to be parents in November.  It will be our first grand child and I can't wait to see what is in store for our family.

But this month has also brought deaths. Just yesterday I attended a funeral for a 32 year old (same age as my son). And although this beautiful young lady had health issues it is still hard to mourn her loss and that of her parents. Today, I received word that a friend of many years lost her valiant fight with cancer.  She was so tough and a real trooper through all of it.  My heart is broken about it.  She was brave and posted not long ago on her Facebook page that we must all love while we can, live while we can and stay in the moment.  This is so true -- a devastating illness shouldn't have to teach us this -- but many times it does.

I am finding it harder and harder to do things and it is getting me down.  I know I am to expect this considering how well I am doing, but it is frustrating. It is hard to admit to friends that many things that are so simple are beyond my reach -- what more can I say?

Tuesday, April 12, 2016


to the Athens NARFE (National Association of Retired Federal Employees) group that had me speak yesterday.  They were a very gracious group and I appreciated the time they gave me.

My friend Lisa Genova sent me a message telling me that Greg O'Brien (a friend of her that has Alzheimer's and has written a book about it) will be on NOVA on PBS Wednesday night.  He will be with Rudy Tanzi -- an Alzheimer's researcher.  I've got it set to record -- hope you can catch it too.

Saturday, April 09, 2016

Gracious -- it has been a long time

since I lasted posted.  All my intentions of sitting down at the computer and adding some meaningful things to this blog seem to fade away before I actually sign in to this blog.  Anyway, thanks again to those who do follow this thing. All the time I swear to do better and then I don't.

Obviously a lot has happened since I last logged in.  I have lost several friends in the last few months to cancer and other things.  As we get older I guess we should expect that but it is still hard.  And, when I go to their funerals or memorials I always think about what people will say when I am gone.  I know what I would want them to say -- but that probably isn't what they will say! 

I have had a few more "episodes" as my husband calls them.  I am having some much harder days and have had to ask for a lot more help.  I am finding it more and more difficult to talk on the phone these days -- I think it is easier for me to see the person I am talking to.  Email and text messages work so much better for me because I can go back and re-read them if necessary.  Sometimes the most mundane things are hard -- like sorting things by color or trying to understand something I read.  I had my first real case of "wandering" which took my husband by surprise. I find it is much harder to control my emotions and I will say things that I have always thought, but not allowed to get from my brain to my mouth!  That gets me into trouble, but trying to filter what I say is much much harder now.  I try to rationalize it that I am getting older and it is hard to be politically correct and to be "nice" but I know that isn't the real reason my outbursts explode!

I am still working through that bucket list of mine.  Tomorrow, one more thing will be crossed off as I have finally gotten my brother to Georgia and we are going to the Masters together.  I have been several times and I was fortunate to have my oldest brother (now deceased) come about 20 years ago and go with me.  So, it has always been my goal to get my brother Tom here for that experience.  We golfed as kids with two brothers and my dad it made for a good foursome.  My oldest brother played golf in college and my other brother and I have played sporadically over the years.  I used to be half way decent but I don't play enough now.  I am just glad that I am able to experience this with my brother after all these years of trying to make it happen.

Monday, January 04, 2016


Happy New Year.  It has been so long since I posted.  Those thoughts don't come as readily as they used to!  Hope everyone had a good holiday.  Our holiday was a little on the quiet side which was good for me.  My son and daughter-in-law spent the Christmas Holiday in Taiwan visiting Jennifer's extended family.  So, we didn't put as many decorations up and that suite me fine.  I don't like everything around the house because "it isn't the same".  Routine is important you know and little things like that can make a difference.

I was reflecting back on the year and realize it has been a quiet year too.  No big trips, no big surprises, no disasters --- which is a good thing.  Sad to say I lost a few friends and several friends are dealing with life threatening illnesses which is hard. Others have fought their battles with illnesses and came out on top.  As we get older, I guess that is to be expected. 

I turned the big 60 this year.  I need to go back and review my bucket list.  My son gave me one of the items on my bucket list " an IOU for a skydiving trip". Something I have always wanted to do --we were going to try it last year but timing didn't work out for us.  He has promised this will be the year.

I am grateful to be doing as well as I am.  Still trying to stay active, and keep the brain active as well. I have really had to say "no" a lot this year to give myself some breathing room.  Activities wear me out quickly so I have to cut back on some things -- but I am still plugging along.

I have been reconnected with many old friends this year and that is so nice.  It is hard to believe that I have known these people over 50 years -- that is a long time!    But it has been fun catching up with them and comparing our lives after all these years.

There are lots of things to look back on and wish we had done things a different way.  But, it is the new year and I hope all of you will look forward to a productive year.

Friday, November 20, 2015

Thanksgiving is Upon Us

I have been trying to get back to this blog for a long time and just keep getting sidetracked. I am still here! The last few years the holidays have made me anxious so I guess I am not looking forward to them like I used to. I guess to many people, too much noise, too much of a lot of things, so I have to keep that in mind while going about my usual routine.

I have heard from many people recently about recent Alzheimer's diagnosis or people just looking for help.  I am glad people are reaching out instead of trying to cope on their own.  I was recently made aware of a new book Not All Who Wander Need Be Lost: Stories of Hope for Families Facing Alzheimer's and Dementia by Lisa Skinner.  It is an easy read and filled with lots of advice and ways of coping with people like me!  Lisa looks at everyday problems families face and offers some great solutions on dealing with certain situations.  It is definitely a book I would recommend to those having to care for someone with Alzheimer's or dementia. The book can be found on Amazon.

Several friends have been dealing with some different health problems and I guess as we get older that is going to happen.  I don't think we necessarily see ourselves as older so sometimes thinking about my friends and what they are dealing doesn't seem possible. But then, they probably say that about me too.

I don't know if many of the things I am experiencing now are just due to old age or the disease but many of the things I am experiencing aren't pleasant for me and I am sure they are not pleasant for my friends.  I hate it -- my emotions are all over the place and I never know how I am going to react to things.  Sometimes it just isn't pretty.  I know I am thankful that I still have friends -- despite how awful I must seem to them at times. 

Thursday, October 08, 2015

Out of the fifties.......

And into the sixties......that will be me tomorrow.....I am finally turning 60. I will take it -- considering what I thought my lifespan would be after getting my Alzheimer's diagnosis.  I am still around -- for better or worse -- and have the best support group of family and friends I could have. Thanks to all of you for helping me through the tough times and celebrating the good times.

Someone asks me the other day if I remember thinking 60 was old when I was younger. I don't think I really did -- but I never really thought about getting old. It was going to come whether I was ready for it or not. So, 60 is here tomorrow and hopefully, I will be too!

Wednesday, August 19, 2015

Back at it

It always takes me by surprise how long it has been between my posts.  It doesn't seem that long.  Thanks for hanging in there with me, guys.  Not a lot of new things to report.  I have had a lot of comment on the Atlanta Magazine article.  It has certainly reached a lot of people and a lot of good has come from it.

I'm longing for a vacation at the beach -- which probably won't happen.  But I would really enjoy getting away and doing nothing.  I'm seriously thinking of trying to go by myself to the beach just for some alone time. 

On another note, health problems hit all of us I guess in some way or another.  I just hate it when a bad diagnosis comes to good people. Today I learned of such a diagnosis for a close friend.  She will get through it -- I have no doubt.  She has a great support network and loads of friends that she is always helping out when they are in need -- so they will be there for her -- as will I.  Luckily, medicine has come a long way in what she needs and I feel great about a positive outcome.  I wish it were that way for everyone.

Monday, July 06, 2015

Atlanta Magazine

The July issue of Atlanta Magazine is all about health this month.  I was fortunate enough to be asked to join a round table discussion about Alzheimer's for this issue.  Thanks to the editors for tackling this subject.  If you are coming to this blog from that article -- thank you.  If you are struggling with this disease -- know you are not alone.  There are many many resources out there to help.  I work with the Alzheimer's Association but there are other groups as well.  This disease isolates not only you but your family so try to reach out for help.  It is hard to ask for help -- believe me -- I know all about it.  But once you get over that hurdle the first time, it gets easier.

I haven't written in awhile.  So many attempts at sitting down at the computer and organizing my thoughts have failed lately that I just gave up.  Today, I guess I am on a roll.

The Longest Day -- a promotion by the Alzheimer's Association -- was held recently on June 21.  Groups are asked to do something for a day -- to help raise awareness and funds for Alzheimer's.  A gentleman in my community, Joe Sinkey, hosted a bridge tournament which he has done for several years.  It is part of a national program through a bridge association but this year Joe's tournament was in the top ten in the nation for funds raised.  So proud of him for doing this every year.  Thanks so much.

I have been experiencing major issues with vertigo lately and have undergone some tests.  My balance has been affected by the Alzheimer's but this is a different.  Am awaiting the results from my doctor. But, I am still trying to play pickleball when I can to get that exercise in.  Certainly can tell a difference when I do. Hope all of you are staying active -- remember what is good for the heart is good for the brain.

Thanks for reading my blog -- more soon.

Saturday, May 16, 2015

And the walls start to cave in

Yesterday was not a good day. I was playing Pickleball with my husband. I usually play about three or four times a week, so that wasn't unusual. But some days it is hard for me because there are too many people and too much noise. I had played a few games and was doing o.k., but then I was playing with my husband (fortunately he was my partner) and all of a sudden it was like the walls were closing in on me, I got confused, didn't know what I was suppose to do and I had a full blown panic attack.  It has been awhile since I had one and I can usually feel them coming on, but not this one. I had to get out of the gym as fast as I could. My husband realized what was going on and helped to get me out. it was as if the whole world was spinning around me and I could not get off the carousel. It is hard to explain, but it can be terrifying if you do not know what is happening for you. I went outside to get away from everything, but I couldn't set foot back in the gym. My husband took me home and I had another one at home -- which isn't unusual for me -- seems like If I have one, I have another or several.  But I was feeling better because I was in a safe place. It was a long day.