YOU HAVE BRAINS IN YOUR HEAD

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As I continue this adventure there are ups and downs – do I stay or do I run?  Do I venture out or do I hide?  I know in talking with friends and remembering my life before Alzheimer’s this saying could be for any of us.  We all have challenges, change, loss, confusion, indecision……….on and on.  Yes, I remember feeling all of the above but now these feelings are so different.  There are days I feel so normal.  I lie in bed in the mornings and I feel great – “This is all a dream, I’m thinking clearly, I remember yesterday – thank goodness, I’ve finally woken up!”  This wonderful feeling doesn’t last long.  The mood swings are the worse.  I can not help that I can’t remember but I should be able to control these swings.

I am corresponding with a couple of women at my stage or a little further along and they all feel the same way………….at certain times they feel SO normal and wonder if they really have Alzheimer’s.  Then the day goes on and there IT is – smacking you in the face – its back, if it ever really left.

My heart swings back and forth between the need for routine and the urge to run.  In the late stage I often wonder if those that wonder off are looking for a peaceful place to go and therefore get that urge to run or wander.  I think of places where I can escape the mess in my head, the feelings of dread and the need to not upset my Husband and family.  Run as far as you can…………..I do believe that no matter what stage we are in there are so many things we understand but can not communicate so never give up on us.

2f86f9ebe2acc2814a461b7db52533b6WELL, the Holidays are over and despite many breakdowns that Tom had to endure it ended up fairly well.  Do any of us live the Fairy Tale Christmas?  I’d love to!  If you look on Face Book you’d think so, but a few family pictures and “So happy all my family is here” may not be the whole story but I hope so – for them.  As I’ve said before – we never know what is going on inside someone’s home. I shall not dwell because as Tom tells me, “Nothing is going to change unless we do!”  To put Christmas week into a nutshell, we went to church twice at two different churches and it was wonderful.  We went to a Holiday Musical with neighbors and enjoyed dinner, drinks and wonderful conversation after. We also attended an after church Christmas Eve party at Tom’s parent’s house and we ended it with another great meal at my Son and Daughter-in-laws house on Christmas Day.  The kiddies were wild with excitement – made me remember when mine were little – that Christmas Day nap was so well deserved – for ME.

Another great memory – us folks NEED to make and hopefully remember them – was participating in the Colonial Williamsburg Christmas Parade on December 6th.  Tom and I carried the Alzheimer’s banner and we all had a great time.  With perfect weather and being near the front of the parade we were able to watch the rest of the parade to the very end.  I still want to know where Santa went.  This certainly put us in the Holiday spirit.  As I’ve said many times the Alzheimer’s Association, staff and volunteers are most wonderful.  They care for us as much as we care for them.  HAPPY NEW YEAR TO YOU ALL!!

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Other great memories for December were taking Riley (grandson) to the Air and Space Museum.  After a couple of hours I had to sit down and let Tom and Riley explore, fly planes and travel three levels. I slept very well that night. The next day we had Emma (granddaughter) over for to make sock snow people.  I had tired making a couple the week before to make sure I could show her and we had a great time.  These are her snow people:

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Money is always needed for research.  If you think this can not happen to you, think again.  If you think down the road your children and grandchildren can not get Alzheimer’s – think again.  In America at present there are 5.2 million people with Alzheimer’s and it is projected in 2050 there will be 16 million. Think how old your children and grandchildren will be in 2050.  The cost to Medicare and Medicaid is 150 billion now and it will be 800 billion in 2050.  Can you or the government afford these costs?  Baby Boomers – think long and hard about what’s to come.

With this research I am praying for a vaccine to PREVENT ALZHEIMER’S from starting because for me and many others the medications out there now have terrible side effects.  Some people do well but many others can not tolerate them and they may or may not work and even if they do work for a while there is no lasting affect………..there is NO CURE.  THERE IS NO STOPPING IT.

Speaking of medications, the 1st of December I started the first line of treatment – Aricept. I won’t go into all the reasons why I could not tolerate it but it was not pretty. After a week or so off the Aricept I started on the Exelon Patch with hopes of fewer side effects.  I want it to work so I can be involved in a local clinical trial.  Without subjects for these trials progress can not be made.  If I have to suffer through this I’d love to make a difference.  How wonderful would that be for my family?  I’d rather pass down a legacy of being one to change the path of ALZHEIMER’S than to pass down my ALZHEIMER’S.

 Wonderful news to my Walk Team and to all of those who walked in October!!

You did it! Many of you signed our petition to tell Congress to approve the Alzheimer’s Accountability Act and increase funding for Alzheimer’s research. Today, both are signed into law. With your help, we’ve reached another milestone in the fight against Alzheimer’s!

Wishing all of you the best for 2015.  I am always available to talk or email.  I’d love to hear from you.

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