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.

Sunday, April 12, 2015

Since my last post

I have been doing lots of things, but not found the organizational skills to put it down in writing.

I spoke to a wonderful group out in Crawford Georgia -- the Democratic Party hosted me for a talk.  There were some great questions out of that group and I appreciate the opportunity to talk with them.

The Public Policy Forum for Alzheimer's was held in Washington DC in the last few weeks.  A lot of really good information came out of the sessions.  I wasn't able to attend this year, but if you are interested in some new statistics here is a link to the 2015 Alzheimer's Facts and Figures . What stuck out to me the most is the diagnostic rate of Alzheimer's.  In a nutshell, it says that only 45% of the patients are actually getting a diagnosis of Alzheimer's from their doctors.  We knew this, but now there is data to back it up.  This is a shame for a lot of reasons -- the biggest one to me is that for those diagnosed early, it hinders their ability to get Social Security Disability and other forms of help they so desperately need.  This, also doesn't help the stigma situation with the disease.  So much needs to be done in this area.

Last week, I met with several other people with a reporter from Atlanta Magazine.  They are doing a Health issue in July and Alzheimer's will be featured in one of the articles.  As part of our panel discussion, we were able to call my friend Lisa Genova - author of Still Alice for her take on what has happened since she first wrote the book and since the movie's release.  By the way, Lisa has a new book out this week about Huntington's Disease.  I haven't read it yet, but if it is as good as the rest of her books I will be recommending it.

I have had lots of comments and emails in the last few weeks from readers of the blog and I have been really slow to respond.  I promise I will try to get to everyone this week.  I appreciate all of your feedback.

Sunday, March 22, 2015

Spring is here

It has been awhile since I have posted.

since that last post several things have happened
-- I tore my MCL
-- I went to Little Rock AR to see the SEC women's basketball tournament
-- We had ice and six inches of snow while in Little Rock
-- We stopped in Scottsbor, AL on the way home to visit Unclaimed Baggage Center -- you need to check them out!
-- my sister-in-law in Illinois fell and broke her leg at the ankle requiring surgery and a stint in the hospital with blood clots -- she is now rehabbing at home.
-- my son and daughter-in-law brought my great niece to Athens (she lives in Atlanta and attends Emory University) to see a UG gym meet for the first time. My niece is a member of the Emory gymnastics club team.

since I posted about the SEC tournament, I wanted to mention that the women's basketball coach for the University of Georgia, Andy Landers retired this past week. he has been the only full time coach UGA has ever had. I am proud to call Andy a friend and will is seeing him on the sidelines next year. I intend to write more about Coach Landers in another post I just haven't gotten it all sorted out in my head yet. I was surprised by how much his retirement has affected me -- he has been the coach for the last 36 seasons -- exactly the number of years we have lived in Athens. But, Andy has been much more than a coach to not only his players, but his fans as well. He will be a hard man to replace.

Monday, February 23, 2015

The Oscars!

Here is a photo of my lovely friend at the Oscars last night.  Lisa Genova, author of Still Alice. She is beautiful.
 
So happy for her and Julianne Moore for winning best actress award last night.

Wednesday, February 18, 2015

More Comments on Still Alice

Many of you have asked me about Still Alice and I have received numerous emails and messages regarding the movie.  I think I want to see it again -- it takes me awhile to catch on to everything you know.

There were several things in the movie that I think only those with the disease would understand.  For instance, when Alice is out running she gets confused as to where she is -- the movie shows her looking around and everything is a blur to her.  Now I am sure many of you can relate to what this is trying to say, but I think it is also a commentary on what is happening in our brain -- it is out focus as well.  There really isn't anyway to fight it -- you just have to hope that it passes quickly.  Then when Alice returned home her husband asked her about going out that night and she looked afraid and said she wanted to stay at home.  I feel safe at home.  When I am having a bad day I can't get home fast enough.  Home is familiar, home is where you feel comfortable, home is where no one can see you, home is peace.  I remember many times being on the treadmill in the gym and I have this sudden panic attack when I am not sure what is happening and I have had to immediately come home to feel "normal". 

I don't go out much at night.  Things look different at night and I get too confused. I used to be the one in the family that wanted to go out and do everything.  Now I am content staying at home in comfort and contentment.

I urge everyone to see the movie -- I am sure that I will have more to say as the days go on.  I do hope that Julianne Moore wins the Oscar this weekend. So well deserved.

Thanks for reading.

Tuesday, February 10, 2015

Still Alice -- the movie

On Sunday, my husband, son, daughter-in-law and I went to see Still Alice.  If you have been following this blog you know that I have told everyone to read the book.  It took me a very long time to read the book, because as I saw myself in the pages, it scared me. "Alice" was (is) me.  I would read a little, put it down for days, pick it back up only to put it back down immediately.  When I finally finished it I was so glad the book had been written -- it so aptly described my life and those living with Alzheimer's disease.

My family had not read the book before we saw the movie.  I was anxious to see their reaction and to gauge my own.  

My reaction -- at first I thought someone "had hit me in the gut". Watching Alice cope with things, knowing what was going through her mind was wrenching for me.  The words she spoke were the exact same words I have spoken to my family or friends. It was almost scary to see it -- to have her feel what you have felt and not being able to communicate it to others.  It is very moving -- I didn't cry until close to the end.  It was when Alice's daughter gives birth to twins and Alice goes to visit her in the hospital. When she asks to hold the baby her son-in-law gives his wife a look as if he is saying "is she capable of holding the baby?".  Alice very quickly says "I know how to hold a baby" and the new father gives her one of the babies to hold.  This got to me because I have had this same scenario in my mind many times.  My son and his wife don't have children yet, but I have silently worried that if and when they do -- they won't feel as if I will be capable of holding the baby or being an appropriate grandmother.  After that scene, the floodgates opened for me.  There were many tears in the theatre that day. I was emotionally spent after the movie.

At the end the screen goes white and people literally just sat in their seats and stared at the screen.  It was very emotional.

On the way back to my son's house, not much was said in the car.  Everyone was just trying to digest what they had seen.  Since they hadn't read the book, I think the impact of the movie was pretty strong.

Many who read this blog don't actually know me -- but if you see Still Alice -- you will know me. Thanks to Lisa Genova, the author of Still Alice (and a friend of mine) for writing such an epic novel. She had no idea when writing this book several years ago what an impact it would have on the Alzheimer's community. I am so grateful to her and her work.

Still Alice is still in limited release but by the end of February it should be in many more theatres. Don't miss the opportunity to see Julianne Moore's portrayal of Alice.

Friday, January 23, 2015

a bad week

I have started this post many times and deleted it. this time it is going to be published whether it is "polished" or not.

as my Alzheimer's progresses my emotions get out of control. My feelings get hurt very easily. I have written before how it has been hard for me to let go of things. I don't know why I can't keep my emotions in check. I don't know if I am imagining things, reading into things wrong, or just losing it at times. But it really affects me when I am left out, forgotten or people just don't care enough, when I have put my heart and soul into a friendship that people do some of the things they do. If I say something to them, they think I am being petty -- but it isn't petty to me. We all have our thresholds I guess and mine is pretty low.

a couple of weeks ago I had two funerals in one day. It brought sorrow and joy into my life -- sorrow for losing two individuals  so young, but joy to know how well they were loved and by getting to see so many people that helped celebrate their life. Tomorrow brings yet another funeral. I guess as we get older, funerals become the norm, but it is still hard.

This week I suffered a head injury and the doctor has deemed it a concussion. Can't say I have ever had one of those, but it isn't pleasant.

Also this week I sat down and wrote several letters -- yes, actual letters. I like writing letters "the old fashioned way". One of the letters was to a man that I went to college with that has had a lasting affect on me. Every time I went back to Illinois I would say I want to go by and see him. I never got around to it. so, I finally decided to sit down and tell him what our friendship meant to me and how he showed me a different way of thinking and how grateful I was to have had him as a friend. I am glad I did that.

I am hoping next week will be better.

Saturday, January 03, 2015

Another year

is in the books and we are greeting 2015. I started reflecting on the last year and was going to write all kinds of things, but realized they are probably only meaningful to me so I am going to spare you from that post right now.

But the past year took many people from my life and probably yours as well.  And, sickness has overcome many and some are not looking at real bright outcomes. I guess as we age that is to be expected.  I am so thankful I am here so long after my Alzheiemer's diagnosis.  I guess that is why I seem to define my life in "time".  Time matters. We take it for granted.  I want to spend my time doing things that matter to me not because someone expects it of me.  Everyone defines their life differently and as we mature we change those definitions every now and then.  Although my husband would never admit it, he defines his life by things.....what he has, what he wants, what he doesn't have.  He likes to be able to touch things, covet things and get better things.  I know that probably stems from not having much growing up. And, I'm sure that my definition comes from never feeling like I had time to be with some members of my family -- like my dad.  My father always worked nights so he was home when we were in school and then he would be off to work when we came home.  I know I worked alot when my son was growing up and wasn't around as much as I wanted to be and I regret that.  I know that he probably does too. So, it is something I will continue to work on -- to be there for my friends and family as best as I am able to.

For Christmas this year, I asked for nothing other than time.  I asked my son to spend time with me on Mother's Day (the actual day of Mother's Day).  I know that sounds silly but sometimes due to circumstances (or distance) we weren't together and I was bothered by that.  The actual day shouldn't make a difference, but for some reason I can't let that go.  So, for Christmas my son has already made arrangements for us to be together on Mother's Day.  From my husband, I asked for acknowledgement. I asked that he acknowledge my birthday this year. That sounds pretty silly too - doesn't it?  But it doesn't cost anything and I will be grateful if he will do this.

Speaking of letting it go -- I have had a hard time with that this year.  I think I have had a drastic shift in my thinking on this.  For so many years, I let things go that bothered me because I didn't want to confront it, didn't want to deal with or just couldn't be bothered.  But then I found it festering in me and getting upset with myself that I didn't deal with certain things and then found myself resenting people because of my inaction.  So now, I'm holding on to things too long and becoming frustrated so I have to find a happy medium.  Hopefully, I can do that soon. 

I am so thankful for my friends.  I have made a lot of new friends this year and it has opened up some things for me that I didn't think were possible.  I am truly grateful for that.

I have had to make quite a few changes in my life this year and that hasn't been comfortable for some of those around me.  But, it has freed me up and I guess I am to the point where I am selfish enough now, to do things for me -- not others.  It has taken me almost 60 years to figure that out -- but better late than never -- right?

Happy New Year!

Sunday, December 14, 2014

I am here

I know it has been awhile since I have written.  I just haven't been able to put my words down.  I think about what I am going to write and then I just can't get the words to go from my head to the page.  Lots of things have been going on -- not bad things -- but just a lot for me to keep track of.  Not doing the "multi-task" things so well anymore so everything just seems to pile up in my brain and I can't sort through anything.

Since I last wrote we have been to my son's in Atlanta for Thanksgiving. We shared the day with my great niece who goes to Emory in Atlanta, my daughter-in-laws parents and her sister.  It was a great day....quiet and Jen and Alan did the cooking so it was an easy day for me.

Last weekend we spent time in Memphis with my nephew Jonathan and my sister-in-law Fran.  Jonathan ran his first marathon there.  I was so proud of him.  He ran in the St. Jude marathon.  Many years ago my great nephew had leukemia and was treated by St. Jude.  When Jonathan was looking for a marathon he chose the St. Jude charity as they had helped our family so much.  Jonathan came down from Champaign Illinois and brought his mom -- Fran. I was so glad she could come as she has been pretty much housebound the past six years caring for my oldest brother who passed away this summer.  We rented a house while in Memphis and spent some time catching up and enjoying Jonathan's accomplishments. But it was a tiring weekend and it took me all week to rest up after the long drive to Memphis. 

Now that Christmas is almost upon us, I am trying my best to stay with my routine but it is hard.  I feel like I am a "day late and dollar short" with all the things I want to do, but feel overwhelmed.  I've asked my family for no presents this year, as I really don't need anything and I just want time with my family.  That is more precious to me and the best gift of all.


Monday, November 17, 2014

November has been a busy month with it being Alzheimer's Awareness month.  Thanks to all the groups that have had me come to speak to their members.  There has been lots of good conversations and questions coming from these groups. 

With Thanksgiving right around the corner, I'm grateful I can still share my story. And, I appreciate all that will listen.