Learned in the trenches ***

I found the following entry by Nell’s son, touching ( and a little frightening).  So I’ll put the link in the index under FEAR.   But I doubt she had the benefit of what I’ve learned about thiamine B1.  Plus the research for a cure holds out promise and hope.

 My mother Nell Canady, battled Parkinson’s for 18 years.  Over the years our family were witnesses to her decline in the quality of life. The disease would have taken her sooner if not for her steady routine of proper diet and exercise and will to live like a fox-holed Marine. My mother was as strong as they come. Before her diagnosis in 1998 she walked everyday, drank nothing but water, and ate mainly vegetables. As her youngest son, sometimes caregiver, and witness to this disease, I want to share some things we learned in the trenches over the years.

Parkinson’s is NOT a dragon to slay, not by your inner might, or toughness. You don’t, nor can you, fight the disease this way. Parkinson’s is NOT a chess match. Meaning, it will make a move and you counter with your move, expecting to one day pronounce checkmate! It can’t be outsmarted no matter how many moves you make, or how smart you think you are.

Once Parkinson’s is diagnosed; there’s just the fight. Fight to live. Fight to not permanently break down. Fight to see your grandchildren grow up or graduate. Fight to stay mentally strong. Fight to do the things you once did or love to do. Fight to not let it get the best of you. Fight to keep your strength up. Fight to keep your dignity. Fight to keep your quality of life. You’ll have good days and bad days. Some days Parkinson’s gets the best of you. Don’t be hard on yourself during the bad days; just remember to keep fighting.

However, fighting Parkinson’s disease IS about how you choose to respond to whatever it throws at you. To fight Parkinson’s disease and live to fight another day is most of the time, the reward.

My Best Advice:

• Stay active and keep your body moving and exercise. The exercise helps fight the disease and slows the disease’s progress.
• Do all the things you always wanted to do before Parkinson’s takes to you a stage your will, physical ability, and mental toughness can’t overcome.
• Remember to give your spouse, family member, or caregiver grace. As a patient, you don’t face Parkinson’s alone. You and your loved ones are sailing into uncharted territories both physically and mentally. Give yourself and those you love room to fail and have bad days.
• Quality of life is everything. Remember our goal was never about living a long life; it’s about living a life of quality. Do what you need to do to fight for your quality of life.
• Mostly importantly, draw near to God and He will draw near to you. Keep God close.

As a caregiver, Parkinson’s disease took me to places physically, mentally, and spiritually I’ve never been and then beyond. It was frustrating when I couldn’t understand my mother when her speech was slurred and everything inside me just wanted to help. If she fell, I cursed my physical weakness. I discovered it’s difficult to lift deadweight of 120 pounds off the floor without help.

Remember what I tell you; you can’t control Parkinson’s, you can only control how you respond to what it throws at you. The last couple years of my mother’s life she was not able to take a bath in a traditional tub or shower, so bathing was reduced to a small washbasin. One day I assisted my father in giving her a bath, and changing her bed linen.

I found myself in a role reversal. I was taking care of my mother like she took care of me when I was a child. It had a profound effect on me. Later that night I awoke at 2 a.m. and wrote the first thing that popped into my mind. I’m a writer and I keep a journal on my nightstand. I turned on the lights and penned what was on my mind. The following was the poem that came from that event and was later published by The Olive Press.  

LIVING THROUGH PARKINSON’S

I wash my mother with a rag.
A slick bar of soap floats
in a small tub of water;
life reduced.

Her nakedness is open to me.
The woman who bore me is vulnerable before me.
I’m imagining my primal birth:
dark water over softs rocks in a brook.
I emerge covered in blood and mud
from the creek onto dry land,
gasping my first breath.

My mother cradles me in her arms, wipes mud from my eyes,
pulls me to her breast.

As a child, she washed me
and put me to bed,
but those footie pajamas are worn thin;
there’s a hole in the sole.
Winnie the Pooh’s honey is gone.

My mother’s hands, once strong,
now covered with thin soft skin like wet tissue,
lie trembling in her lap—
hands that held me, fed me,
spooned bitter medicine into my mouth,
now helpless, worthless stones of flesh.

I cut a fresh diaper with scissor-snips.
I slip her diaper over her feet.
Spots of red nail polish speckle her toe nails,
reminding me everything fights to hold on—

I lay her down in bed like a child
upon fresh linen.
I fix her pillow.
She likes to watch westerns on TV,
so I turn it to her favorite channel.
She’s seen this one a hundred times,
and so have I.