One of the hardest things about LIVING with ALS is the loss of independence. You become dependent on everyone else to do things for you that you used to do on your own. Before my ALS progression, I used to be very independent. If I wanted to do something, I usually did it. Now I am dependent on others for everything! Losing your independence sucks! But I’m #grateful to be ALIVE!
Losing your independence is gut wrenching. Imagine no longer
being able to drive. You can’t go to the store or get a bite to eat at your
favorite restaurant. I must have someone drive for me, usually that’s Carol in
the Big Ass Van. I have to have someone else sit with me in the back of the van
in case I need to cough, or something else I need, or in case of an emergency. Losing
your independence sucks! But I’m #grateful to be ALIVE!
I have to have someone dress me daily. Imagine no longer
being able to brush your teeth or shave. I can no longer shower myself. It
takes 2 people to safely shower me (usually Carol and a caregiver). Don’t get
me started on going to the bathroom (either #1 or #2), I must have someone help
me with that too. The loss of privacy and dignity takes a toll on me. Losing
your independence sucks! But I’m #grateful to be ALIVE!
Someone has to feed me 4 times per day (I have a figure to
maintain). I have to get hydration whether it’s water or beer, after all I’m a
BEER MAN! Just think about not being able to go to the refrigerator and get
your favorite beverage. Or go to the pantry and get your favorite snack. Losing your independence sucks! But I’m #grateful to
be ALIVE!
I must depend on others to change the TV channel for me.
Because I can no longer control the remote. I have to ask someone to turn the
lights on or off. I do have some technology that allows me to control the TV,
lights, and even the shades from my computer. At least I have something I can
control! Losing your independence sucks! But I’m #grateful to be ALIVE!
It takes 2 people to safely move me from the bed to my chair
during the day. Once I’m in my recliner I generally don’t move anymore until
bedtime. Because it’s too difficult on Carol and the caregiver. I’d like to go
outside more or just go out more, but that too is difficult to safely move a 6’
8“tall, 285-pound guy around! Losing your independence sucks! But I’m #grateful
to be ALIVE!
Don’t get me wrong, I have the best caregivers in the world,
including my primary caregiver and the love of my life, Carol! I appreciate
everything they do for me! I love them all! They have become family to me and
Carol. But I would like to have some of my independence back. Losing your
independence sucks! But I’m #grateful to be ALIVE!
Despite losing my independence, I’m #grateful to be ALIVE!
I’m #grateful that I have great friends and family who surround us with love
and support. I’m #grateful for my caregivers, Bernadine, Alicia, Erica, and
Regina who give me so much love and take great care of me! They are truly the
best in the world at what they do! They are truly a gift from God! I am a very
blessed man.
Be #grateful for what you do have. You might lose it
tomorrow. John Wooden once said, “do not let what you can’t do interfere with what
you can do”. I think that’s an important lesson for all of us.
What are you #grateful for?
#maketodayyourbestday #EndALS #FaithoverFear #grateful
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