Thursday, July 18, 2013

Steve Gleason and the fight for ALS research

I know I said I would show you some

artwork today...
 I couldn't get this man off my mind today.
 Steve Gleason
former NFL player
who was diagnosed with ALS in 2011

My great aunt whom I was very close to
was diagnosed with ALS
in her 70's.

When I mention ALS to people they usually have
no idea what the disease is.
They have probably heard it called Lou Gherig's
 they don't know WHAT 
ALS does to a person.
Once I give a brief description 
they usually get this awful look on their face
and say
 "Oh, wow - that is horrible"

I am thankful to Steve and his foundation for championing
this cause and giving it a face.
He could have quickly left the public eye
but instead he chose the time he has to try and make a difference.
The blog for his site is what I find
most interesting...
stories of others making it as best they can..

I'd like to give you a tidbit
of what my experience with my Aunt was...
We'd go to visit her at least once or twice a year.
She lived about 5 hours away.
We always had a blast out in the country...
picking blueberries, thrift shopping, talking for hours on end.
This is my Aunt and Uncle
circa WWII on my Great Grandmother's porch.

I can't remember how many months before she was diagnosed-
but I was visiting her for a few days with my mother...
she mentioned in one of our conversations that she
was having trouble swallowing
She was clearing her throat a lot and she asked if
I ever just felt like I got choked up for no reason?
Seemed odd to me 
but I said no and thought nothing of it.
I told her maybe she was getting dry mouth due to some of her meds.
Something I see a lot with my patients at work.
Shortly after this visit
 she was diagnosed w/ ALS.
The odd thing in her case was she was experiencing a lot of the symptoms in
reverse from most patients.
She lost the ability to swallow and speak early on.
She HATED not being able to talk when we came to visit.
She'd furiously write on a notepad we gave her when we saw she
couldn't choke out more than a few words.
I do mean choke.
She dealt with it though, she was tough and amazing.
She had to start feeding herself with a tube the next time
I saw her.
Most patients lose the ability to do these things last from what
I understand.
Most lose the functions of hands,arms,legs,etc.
then the speech and eating.
The hardest part was her mind was still so sharp and exactly the same.
It is like you live in this fragile shell you lose control of
only to still be the same person mentally.
She eventually was confined to her home and then bed.
If I remember correctly the process for her was maybe 2 to 2 and a half
years from diagnosis .

If you don't know much about ALS
please take a look at Steve's site.

I felt like this was one of those days
where the 
"My creative Journey in Life, Love, Art, and Junking"
was reflected by my aunt.
People like Steve and my aunt
they inspire me to live life as full as I can mange.
All this rolls into my inspiration for my artwork in a way
as well.

I just wanted to share this and hope
you may learn something or be inspired yourself.

Thanks for visiting -
Artwork will be next - promise!

1 comment:

  1. Oh Pam, it's an awful disease. There was a couple we were friends with -- we each got married within a few months of each other -- and he passed away from ALS. It went very quickly for him and he was only in his 50s -- so, so sad. :(