Straight Talk About Living With Parkinson’s

Blogger: Debbie Arace – “Ray of Sunshine, Hope & Laughter”

Against my better judgement, I am going to take you behind the laughter into the reality of this disease.  The only reason I am doing this is because a friend thought I needed to share the truth about what daily struggles are faced, and how I cope with them.  Mentally, I try not to talk or think about what I go through, I just do it.  I really find no comfort in feeling bad about what’s going on.

It’s coming up on twelve years since I first noticed the twitch in my left pointer finger that made me say,  “Crap, I think this might be Parkinson’s”.   I immediately went through all the stages one goes through when hit with a terminal condition.  I assumed I was dying.  I saw and felt my body beginning to act differently.  Every movement became a struggle.  I could sense a state of worry wanting to inhabit my brain.  I needed an intervention and fast.  I called upon God before I went to the doctors.  I asked for strength, courage, and guidance.  In silent prayer, I decided that if I had to have this disease that I would accept it but in my own way.  I believe God said go for it and  I did.

“You Get What You Get…

There’s a quote from a popular children’s book “Pinkalicious “ by Victoria and Elizabeth Kann that goes like this:  “You get what you get and you don’t get upset”.  I have learned to survive life living by this credo.  When life throws a punch my way I don’t say why me, I say why not me?  I’m not immune to life. I just know what medicine to take so I don’t land on my back.  Laughter is my medicine of choice.  I was going to make laughter part of the meds I’d now have to take to combat what was happening to me.  Some people turn to street drugs or alcohol to numb their pain but those are not options for me.  Too risky.  I’ve found that laughter is a much better way to ease the pain with no side effects other than maybe peeing your pants. (Loss of bladder muscle control already causes that so that side effect is already covered, ha, ha).

deb

Parkinson’s affects everyone differently.  This is how it affects my body. I wake up usually in the middle of the night either from trying to move or because my bladder wants me up.  It takes a couple of minutes to figure out the easiest way to maneuver out of bed because of the stiffness.  I’d prefer just lying there but the bladder says you have ten seconds to move or I will.  The bladder always wins which literally pisses me off.  ha, ha. Turning in bed requires work which has become a daily workout regimen. I feel like a beached whale that can’t flip itself over to get back in the water.  Once I flip around its time to sit up.  I attempt four to ten tries at pathetic sit-ups before I’m finally able to get myself into a sitting position.  Once I sit up, I have to mentally prepare to stand up.  I become The Little Engine That Could.  I think I can, I think I can.  When my granddaughters were younger, they applauded me when I succeeded.  They’d say:  “yeah, you did it”.  When the youngest one sees me struggle now she looks me in the eye and matter of factly says:  “Just ask God for help”.  I do and He does.  Once I get into a standing position, I have to tell my brain that it’s okay to start walking.  I can only go a couple of steps before the discomfort of standing and walking starts.  This leads to me propping myself against something or sitting again.  There is no graceful way to sit.  I usually just plop down because the muscles are tightened up.

Sitting for any length of time, usually ten to twenty minutes, causes my legs to really stiffen.  That’s when I start changing positions to get comfortable.  Walking, something that I loved to do, has now become a feat within itself.  My toes curl under my foot so it looks like my feet are headless horsemen.  This makes walking painful and difficult.  I go only a short distance.  They say walking helps.  I’m sure it does, it just doesn’t help me.

My left-hand shakes, so I have to maneuver things in a different way. My strength (I used to be strong like bull ha, ha) is weakening.  Everything that came naturally is now a chore.  Going out is a challenge. Just getting ready takes an additional two hours added to my beauty routine.  If I do go out, which is rare, I need to know in advance how far I have to go from point a to point b, are there steps, are there handrails, where’s the bathroom, and how long am I expected to stay? Because of the bladder situation, I find it difficult to plan on going places.  Should I have an accident while out requires much work to do.  Removing clothing is a struggle. I can’t just do what used to come naturally, which is why I prefer staying home.

Some people understand, some don’t.  Honestly, at this stage, I do what’s right for me.  If people don’t understand there’s nothing I can do.  I try and make the best of things by laughing it off and not thinking about what’s happening to me.  There’s no need to think about what’s happening.  It’s my new norm and I deal with it.  The only thought that I put into it is the thought of how to do what needs to get done.  Now you know why I don’t think about what Parkinson’s is doing to me.  If I thought about it, I’d be depressed.  I prefer injecting myself with a good shot of laughter to ease what’s happening.

How I Use Laughter To Cope With Parkinson’s

There is nothing funny about how Parkinson’s affects the body.  I can’t control what it does to me.  All I can do is control how I let it affect me.  I choose humor to get me through it.

When I went to a top neurologist from Columbia University, and he confirmed what a previous neurologist had said, about me indeed having Parkinson’s.  I thought I’d have some fun.  He said:  “You have Parkinson’s”.  I looked the neurologist in the eye and said:  “I don’t think so.  I know what I have and it’s not Parkinson’s”.   Here I am telling a prominent neurologist that he was wrong.  The nerve.  I mentioned that Dr. Parkinson’s had studied the symptoms of others, and made his conclusions without himself having the disease.  Why then should I call my “dis ease” Parkinson’s when he never suffered from it?  I told the neurologist that I did my own study, and knew exactly the cause of my symptoms.  With a straight face, I said:  “I have Auginsons”.  He looked at me a bit perplexed, as I asked if my husband could come into the examining room.  He said yes.  I explained the reason I had tremors, and why my body tenses up was standing right before us.  I introduced the doctor to my husband.  I said: “meet Augie, the cause of my “dis”. ease”.  After spending time with the two of us, and watching us interact with one another, I’m sure he agreed with my self-diagnosis.  I indeed suffered from “Auginsons”.  lol.  He turned to me as I was leaving and said:  “Your humorous approach to this disease is going to decrease its affect on you.  You have a great outlook on dealing with life”.  I simply said that humor is my antidote for life.  He agreed.  I knew at that moment that the most important prescription for me was to take laughter when needed.  It is needed constantly.

From that moment on, I decided to lessen the blow of this disease by coping with it in my own way.  I can deal with having Auginsons.  Heck, I’ve had it most of my life.  I know there’s a cure for it too, although it may land me in jail, lol.  Seriously though, I choose to find humor in dealing with the everyday trials of my “Auginsons.  As the book says:  “You get what you get, and you don’t get upset”.  I have what I have.  When I look at the sufferings of others, I have no reason to be upset at what fell upon me.  I don’t have to like what’s happening to me, but I have to live with it in the best way possible.  That way is with humor.

Not only does humor help me through it, but I think it helps others get through it with me.  I don’t want anyone to be uncomfortable watching me, so I crack jokes instead.  When my hand began to tremor more, I told my granddaughters that my hand was magic. It could do things others hands couldn’t.  They began referring to my left hand as my magic hand.  They still do.  When I had to get a chair lift, not to make them frightened by seeing me in it, I told them I had a magic chair ride in my house.  Naturally, they wanted a magic ride.  They would bring friends over to take a ride in their Nanna’s magic chair.  They loved it.  This makes it easier for them to handle.  And it makes me happy knowing that they don’t take my illness too serious.  My way of joking about what’s happening to me makes it easier for adults to deal as well.  People don’t know how to react when they see my condition.  By me joking about it, makes them more relaxed around me.  When I say I have Auginsons, most people get it so they don’t feel sorry for me (or maybe they do ha, ha).  The plus side of it is that when people watch me shake when doing something, they usually offer to take over the chore.  It’s a win, win for me.  Ha, ha.

My hubby is a tremendous help around the house.  He’s always willing to help.  Of course, things are done his way, and in his time frame but they do get done.  And yes, I cringe and tighten up when I watch him work.  lol

I am not trying to make less of Parkinson’s.  It’s no picnic not knowing from day to day how the body will react.  Loss of motor skills, muscle strength, bladder control can definitely be a downer.  I take it as it comes.  Some days I push harder than others.  I always try to do the things I used to do around the house.  It may take me hours, days or a week to complete a task but I do it with determination.  Other days I spend quiet time with God.  I’ve created my own happy place within the confines of my home.  I don’t expect people to understand why I don’t do things as I used to.  I do what’s right for me.  All I ask is to be respected in my decisions on how I cope.  The hardest part of this disease is when people don’t understand the effort that’s put into every day things that we take for granted.  Humor definitely makes coping so much easier.  So does the understanding of others.   Remember, just because I’m laughing doesn’t mean I’m not hurting.  I’m just choosing not to get upset.  Believe it or not, the high of laughing really does work better than any high alcohol or street drugs give.  Isn’t my way much better than going into a state of depression?  Life is what we make it.  I choose to make it a comedy of errors.

We are all going to face challenges.  They may hit us like a ton of bricks.  If we can learn to take them on, and not get upset, we stand a good chance of getting through whatever we may face.  If we can find humor in trials even better.  We all owe it to ourselves to move forward in dealing with the unexpected.  I move forward with laughter. When people come to visit I like to give them a dose of laughter, and I try to make them leave with a goody bag of fun moments from my “crack up” house.  I guess I am a drug dealer because I want people to become addicted to laughter like I am.

Writing has become a form of therapy.  It prevents me from going to the dark side.  I guess that’s why my stories are so lengthy.  If you’re one of the few that reads my winded words, thanks.  You’re part of my therapy too.


bippic2019

Married 44 years to my hubby whose purpose in life is to prevent me from getting through the “Pearly Gates”.  Mother of two, Nanna of four loving granddaughters and retired secretary aka administrative assistant.  I went to the University of Hard Knocks where I received my Doctorate.  My thesis is titled:  How To Survive Life’s Trials Without Killing Yourself or Someone Else.  I live by the belief that when life throws you a curve, learn from it rather than use it against yourself.  Faith and humor are my survival kit.  Appreciate the simple things for they are the true treasures of life.

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