Daily Grit by Wes Thorp

We didn't use the word Parkinson's all day last Saturday

Around our house, it's hard to go a whole day without using the word Parkinson's.  It has a way to taking over your life.  Everything you do from hour to hour is a reminder that you have the disease.  I sometimes feel like a blob is growing over me, the PD blob.  Last April when I was diagnosed, I wrote about how I didn't want to become the disease.

When we got home on Saturday from Frankenmuth where we ate at the Bavarian Inn, I commented to my wife Gladys that I don't remember using the word Parkinson's all day.  It felt great to not be reminded for several hours of the disease that's affecting my whole body.

I still couldn't escape my walker that limited my mobility.  It was sandwiched in between smiles from four of our six grandkids who were taken in awe by a horse drawn carriage or the making of fudge.

My voice was weak, but the Holy Sprit was telling me to enjoy the moment and I did.

My Parkinson's Disease affects my gut big time

What about my constipation and defecation problems, along with the drooling?  This video explains it.  It's all part of Parkinson's Disease  which I have been diagnosed with.  This is all part of my effort to understand this disease.

I would have made a big mistake if I had stayed at home

I would have made a major mistake if I had stayed home from our family vacation because of Parkinson's Disease.  A major mistake.  I told my wife Gladys last week that I would slow them down and throw cold water on their ability to have a good time.  I am slow and can get easily exhausted.  My body is becoming more rigid and I talk in hushed tones.  Going to the beach in New Buffalo on the very southwest corner of the state, according to my thinking, could be a major downer.

Boy, was I wrong!  I had my own posse to help me.  At the beach my precocious nine-year old grandson surprised his parents by going to the beach club if they had a chair that would help his grandpa who has PD make it out on the beach.  And, he followed up with the presumptuous question that there would be no charge for that.  "Right?"  The attendant smiled and pulled out what looked like a nice lawn chair with really fat tires.

My son-in-law pushed me over the boardwalk and through the sand leading to the beach.  And my son offered to push me back.

It was non-stop for four days with my daughter and daughter-in-law helping me walk out to a fire pit last night.  And then there was The Church Brewery where my son and son-in-law got them to open a gate granting access to an outside patio where we drank Pontius Pilate craft beer,  a really tasty IPA.

They wanted to make sure that I was included in the family festivity's.  And then there was my wife who has been my major cheerleader throughout this journey.  I had serious problems turning over in bed.  She patiently helped me.

Do I realize how blessed I am?  My family of two kids, their spouses and our six grandkids and, especially my wife are gift straight from God.  They reflect the love of Jesus, especially with me about to become a newly minted 73-year-old.  

Here’s why we decided to move out of our comfort zone as senior citizens

We did it.  We made a major move as senior citizens to another part of the state.  It’s the second move in two years.  Why did we do it?  Where did we move?

For my wife and I, we did it for several reasons:

1. Part of our immediate family lives in Dearborn where we purchased a condo.  Our daughter and husband live here.  We live 10 minutes away by car.  They have four kids which means that we will have lots of contact with a major share of our grandkids.  Two of our grandkids live in St. Louis.
2. We found that a “senior citizen lethargy was setting in where we were getting in a rut.  Change is becoming harder.  My body seemed to rebel at changing even my breakfast habits like eating oatmeal with banana slices for the past twenty years.  We didn’t want the rut to get too deep.
3. I have Parkinson’s Disease which means that the challenges will get greater.  We were able to purchase a condo that’s centered around one main floor and that has the capacity to accommodate a ramp if the need arises.
4. But more than anything else, it was being close to family.  We talked it over with our daughter and husband where we laid the cards on the table.  They reacted honestly as we did.  They were enthusiastic.
5. Medical resources abound here.  It’s the process of finding new physicians that fit my needs and my wife’s as the need arises.  I have a case manager from BCBSM to help me with that.

How do we feel as we settle in to our new home?  Tired.  My wife got stuck with the hard work because of the Parkinson’s.  My balance is off as is my endurance.

However, we are excited.  We know that God is with us and families as we make the transition.

 

MY PARKINSON'S REPORT: I feel tremors inside of my head

In the almost four months since i've been diagnosed with Parkinson's Disease, it has been a wild ride.  My gait has changed dramatically with steps requiring me to concentrate on going "heel-toe" for each step.  Not only that.  I now walk with a walking stick that my grandsons seem to enjoy using too.

Besides that I have trouble getting out of bed and have trouble getting off the toilet.  Going up and down steps has become more of a chore, especially the just below the surface feeling that I could lose my balance.

Most recently have been the tremors with my head.  However, my wife-Gladys has watched me carefully and has seen no movement in my head.  Nevertheless, I feel the movement inside my head.  It feels like constant movement, even though it doesn't show.  

Right at this moment it has slowed down, but it can come back at any time.  What does this all mean?  I have no idea.  The way I understand Parkinsons can present itself a variety of ways.

Is this frustrating me?  It could very easily.  So far I've been able to fend off the serious frustration.  It's like having a double-feature playing inside my head while this is happening.

 

Here’s what I like about Dearborn Christian Fellowship:

I’ve checked in on Swarm five different times at Dearborn Christian Fellowship in the town that made Henry Ford a household name.  I’m now the Swarm mayor which means absolutely nothing.

What impressed me was to make a seeming difference in the lives of people who go to church there, especially the kids who attend like my four grandkids who are active there.  Because of a seeming partnership between  their parents and the church, they know who Jesus is.  Their lives will revolve around that relationship.

I was touched by other things, like:

• My son-in-law bringing me a cup of hot coffee as the service was beginning without concern that an elder would admonish him about bringing caffeine into the service.
• Then there was the banner to the right of the pastor giving the sermon.  It was a reminder that “God Fights Our Battles.”  I presume this includes guys like me fighting Parkinson’s Disease.
• There was the young family sitting behind us who were extraordinarily friendly.  It seemed sincere.

Did I experience the presence of God there?  You bet.  He was there.  I saw him through other people.

I got really pissed off this morning at my Parkinson's Disease

I allowed myself to really get pissed off, angry and frustrated with my Parkinson's Disease.  It's my voice.  I can't carry-on a conversation with anybody other than myself and that's not been too stellar lately.

I want to be able to talk and hold a conversation with my wife, my kids and my grandkids.  I want to be able to talk over the phone and hold a decent conversation with anybody without getting frustrated about not being able to form my thoughts into clearly understood words.

This morning sitting on the couch as we read our email, Facebook and news stories, I tried to share what I was reading.  But I had trouble getting my voice to carry to the other end of the couch.  That ticked me off.  I could have cussed, cried and complained.

I hadn't yet done my exercises that I learned in speech therapy for Parkinson patients.  I asked my wife to measure me on her decibel meter on her phone.  

When we sat at the kitchen table to do them, I found that I was still totally frustrated.  I tried to flat hand our oak table.

Using my frustration, aka anger, I belted out some of the strongest and clearest voice yet.  I need to be able to box up that frustration and save it for when I want to talk.  I'll try this out when I talk with my friend Ken over the phone at noon when he and I do a Bible study together about Jesus.

I pray that God will give me the power to not let PD become a prison for me.  With his help, I can beat this.  I need my wife and my family to get this done.

I've just added doing a TED talk to my bucket list.

The best years of my life have been the past 38 being married to Gladys

 

A Gladys Retrospective

A short visual look at Gladys over the past 38 years

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Today is our 38th anniversary of being married.  If I ever doubt the presence of God or the reality of his existence, all I have to do is think of being married to Gladys.  What gives our relationship vitality is our mutual relationship with God.  

Our family started at two and now numbers twelve.  It's further proof of the love of God and his existence.  My memory bank is filled with so many kid and grandkid memories.

We've shared all this, whether it was the birth of our first child, our daughter Krista.  She carried her for nine months, but it was an experience that we shared.  The night that my late mother died, Gladys was there too.

And there's everything in between.  We've entered a new phase of our life.  

What are we going to do to celebrate.  We're going for a sandwich at a place in Mason called the Vault.

Thank-you God for Gladys.

Bill Thompson, a friend and former colleague, just wrote a book about his career as a Great Lakes broadcaster

 

Bill Thompson's book about his career as a Great Lakes Broadcaster is just starting to hit the bookshelves at Barnes & Noble and Amazon.  It's worth picking up if you fall into one of two groups:  you remember when radio news dominated the airwaves with what was happening or you're really young and have no memories of the glory days of radio news when a radio personality was in more living rooms and kitchens than any politician.

Bill's broadcast footprint over the past four decades was huge.  For a lot of people around the state he was a voice that could be trusted.  He gave them the latest-greatest of what was happening at the State Capitol and what was happening in agriculture around the state.

I got to know Bill during the 12 years I was pressroom manager at the State Capitol.  I was a conduit for news happenings between the legislature and state government.  He came to me to learn where the restrooms were and for news happenings.  

He was one of a large contingent of radio news types covering state government.  They had the ability to do an interview or news conference and get it on the air quickly.  They were from all over the state of Michigan.  Bill was a mainstay of that group.

His book is chockfull of stories based on a career spent in Great Lakes Radio.  Lots of names and lots of stations.

And if you look closely you'll see a picture of me sitting on my throne in the old pressroom at the State Capitol.

I would recommend his book.  The title "My Life As A Great Lakes Broadcaster."  It's also on Amazon, including a Kindle e-book.

Okay, I admit that I'm a broken person

Real guys are not supposed to admit this, but I feel my brokenness as a person.  A friend suggested that when I showered each morning that I should examine my gender.  Am I still a male?

Because of Parkinsons Disease, my body feels broken.  I walk with a shuffle and bent way over.  My joints, all of them, can really hurt.  It takes me forever to get off a soft couch or chair.  I have trouble communicating because of my weak voice.  I'm losing weight when I'm not trying.

There's more.  My father abandoned me and my mother when I was a baby.  He simply vanished.  No word.  Nothing.  I've felt the sting of that all my life.  It's like a rattlesnake bite that never goes away.

Over the past two weeks, I found myself listening to the podcast Discover the Word where Ann Voskamp, author of the Broken Way, talked about her brokenness and how she viewed it.  I first listened skeptically as she talked thinking that she was just another person who spoke to women who were facing marriage and kid problems.

Then I started to identify with what she was talking about.  I could see it in myself.  I was broken through and through, but I didn't want to admit it.  So what should I do with that?  

She has a cross on her wrist which she felt tipped on her skin.  The answer is taking that lifelong brokenness to the cross of Jesus where he didn't want to suffer, but he did anyways.  He said while on the cross, "Father, why have you forsaken me?"  He can make me whole and that's what I want before I die and I'm planted in our cemetery plots in Okemos.

How long can I wear this cross that I felt tipped on my wrist?  I need to be reminded everyday.

I will check back.

Baby-boomers: Should you really walk 10,000 steps a day?

Are you a baby-boomer?  I'm a member of the first class of baby-boomers.  I stopped jogging a while ago when my knees started to hurt real bad, but I still walked, usually with my wife.

The goal has been to walk 10,000 steps a day.  I assumed that was based on research.  Well, according to this NPR piece, it was the product of a marketing team making pedometers.  Recent research shows that longevity can be increased with less than half that amount.

Great to know.  Right?  For my almost 73 year-old knees that's a difference-maker.  I can easily walk more than 2,000 steps in the morning in our small condo.

What about you?  Do you walk everyday?  10,000 steps?  Less?

Walking on our back forty with my friend Parkinson's and my other friend, my wife

My friend Ken knows pain.  He's a longtime MS patient who is now limited to a motorized cart.  He's paralyzed from the waist down.

Since I was diagnosed with Parkinson's, he has been mentoring me in how to co-exist with a disease that has a big, sharp bite.  When we talked on the phone today, he shared that I needed to walk and break through the mental barrier that says "no way."

After our phone conversation today where he talked about the hot weather in Florida where he and his wife live, I made up my mind to walk even though I didn't feel like it.  

With my wife and my walking stick, I made it around a long block.  Even though my Parkinson's said no,  I said yes.  

Hopefully and with the help of God, I can keep that sense of intention high.  

Does a newly-minted 35-year-old son want to know that his dad is really proud of him?

Our son-Justin-is 35-years old tomorrow.  I want him to know that I'm really proud of him and the man he has become.  He's an amazing husband and father.  For more than two-years, he and my son-in-law, Adam Jones and my longtime friend Ken Alexander, have been meeting online to talk and pray together.  We've become a band of brothers.

What needs to be called out is his solid love for his wife Lauren and his two kids Miles and Eloise and for his parents and everybody else who comes across his path.  But in front of his love for them is his love for God.  That governs everything in his life.  I'm not saying he's perfect and that I've put him on a pedestal.  

He "Remembers Who He Is."  That being a truly loved child of God.  That's where his hope comes from.  I pray that will never change.

I could go on and on about all the different stuff we've done together, all the cappuccinos we drank together, all the grocery shopping we did together, all the craft beer we've drunk, not to mention the wine and coffee, all the golf we played, all the Promise Keepers we attended together all over the country, the time we spent in prison one night, as well as a momentous visit of the college he attended and graduated from.  Then there was the time, I was his best man at his wedding to Lauren.

I know he knows I'm proud of him.  I just wanted to put it on the record.

Happy Birthday Son.  

Listen to this woman with Parkinsons and how she deals with the loss of her voice

I have a new hero, at least for today.  She's a Parkinson's patient who dealt with a serious loss in her voice.  When she spoke she had trouble making herself heard, particularly with her grandkids.  Her diminished voice resulted in less human interaction.  She talked a lot less.

I've found myself in the same position.  My Parkinson's has greatly affected my once powerful voice to nothing more than a weak whisper at least for part of the day.  I get really frustrated when I can't make myself understood.

The experience has given me a whole new level of appreciation for people with speech challenges.

To combat this I took intensive training with a speech therapist in a program called LSVT Loud designed for people with Parkinson's.  

Did it help?  Yes.  It gave a couple of tools to use to strengthen my voice and put more power behind it.  I'm still a work in progress.

Listen to this short video and listen to her second set of "ah's."  Check how long she holds the ah's.  Pretty impressive.  She's a star.  And then listen to her conversational voice.

That's what I'm aiming for.

How many of you switch sides of the bed overnight with your mate?

We've done it all our married life, almost 38 years.  During the middle of the night when I get up to pee, we switch sides of the bed.  For me, it would seem strange to wake up on my side of the bed.

When we told our married kids that, they seemed to think that's really a strange habit.  Like how can our brains handle the switch of positions?  It's better than taking the natural sleep aid melatonin.

There's something comforting about changing sleep positions.  My sleeping psyche sees the world from a different position.

How many of you own your sleep positions and would change for nothing and no one?  You have your side and you laid claim to it early on.

At what age do you become elderly?

Baby-boomers and others:  I am a member of the first class of baby-boomers, meaning I was born in 1946.  I turn 73 this year.  Am I elderly?  To check, I went to the source of information for questions like these, Google.  

It said, "Most developed world countries have accepted the chronological age of 65 years as a definition of 'elderly' or older person, but like many westernized concepts, this does not adapt well to the situation in Africa."  And you go down the search engine results and you quickly see there's no standard definition of elderly.  But they seem to center around being more than 60.

For me, it's going to take some getting used to this definition.  It's a word with power and suggests canes, walkers, doctors and nursing homes.  I accept the fact that I'm the patriarch of our family.  I've kidded family members that means because of my age I've made more mistakes than them.

What about you?  Got any problems being called elderly?

 

What it’s like two months after receiving my diagnosis for Parkinson’s Disease

I still feel like a deer on a Michigan highway that’s standing in the middle of the road late at night.  You see them standing there staring at you as you barrel down the road.  They don’t move.

It’s been two months since I was diagnosed with Parkinson’s Disease and my life has changed.  First, the diagnosis has done wonders for my prayer life.  I’m in constant contact with God, Jesus and the Holy Spirit.  It’s like I have them on speed dial.

My once strong voice has become a whisper on many occasions.  I had a voice that could be heard in the other room.  I could never whisper comfortably for fear that somebody would hear me talking.  I now have to practice talking in a coffee shop environment like a Starbucks where there’s music.

I’m stooped over when I walk.  I have to consciously remind myself to pull my shoulders back.  My back hurts more and I have a Parkinson’s shuffle when I walk.  I have to tell myself that I need to walk heel to toe.

So what’s the answer?

God has become more real to me.  I know that he speaks to me through the Bible and I try to read each verse listening for what he says to me.  This is particularly true of the Psalms which are prayers and songs.

Have I asked God to heal me?  You bet.  There’s a good likelihood that he won’t.  Will he be with me as I walk through this?  I am counting on that.  Will he be with my wife Gladys as my caregiver?  I see him everyday in her and how she love me.

What about Rock Steady Boxing for Parkinson’s patients which is non-contact?  You learn all the moves and the discipline of boxing and you participate in all the fitness programs.  

Because of a brain tumor in the back of my head, the neurologist hasn’t cleared me yet.  They are trying to eliminate vascular Parkinson’s.

What about the above picture with the decibel meter on my wife’s iPhone?  We split a small coffee at a nearby Starbucks and measured how loud I’d have to be for somebody to hear me across our small table.

How’d I do?

Poorly.  It feels like I’m shouting to be heard.  My wife says not to worry.  I’m not there yet.

More to come.  

I should probably warn our neighbors that the noise is coming from me

 

 

 

I graduated from my special speech therapy program for Parkinson's Disease patients on Friday.  My speech therapist Nicole led me through LSVT-Loud designed especially for people whose voices have been reduced to a whisper like mine had.  We met for an hour a day for four days a week with homework each day with two times a day on weekends.

For me, the most frustrating part of having Parkinson's so far has been being reduced to having a voice that couldn't be heard on the other end of the couch.  I felt trapped in being able to communicate with anybody, including my wife, my kids and my grandkids.  At church we sat in the very back row to avoid having to talk to anybody.  At a fast food restaurant, my wife would order and at a restaurant with a waitstaff, I would tell the waitperson that "I'd take the same as her" pointing to my wife.

Nicole ran me through a variety of exercises everyday which had me belting "Ahh's" going up and down the scale.  She took decibel readings each time to let me know where I stood.

I moved on to phrases and then to reading whole sections of copy, including a book.  I learned about breathing and how to "Think LOUD."  

What now?  I have to practice everyday to keep my voice in shape.  As a Parkinson's person, I have vocal chords that need to be recalibrated often, at least everyday.  I haven't gotten all the way back, but I can see it on the horizon.  I've been given the tools.

Nicole, you've been a world-changer for me.  And to Gladys, my wife, you've been beside me through all this.  You're my world-changer too.

I'm on the way towards getting this under control and I praise our Almighty God for that.

 

Watch Kirk Gibson talk about his Parkinson's Disease

This week I graduate from an intense four-week program for Parkinson's patients who have lost a lot of their voice.  This video shows how Kirk Gibson, a MSU football legend handled his Parkinson's Disease, including his ability to talk loudly and clearly.  He's a graduate of the same program.  About 10 minutes into the video, he talks about how he moved from being a Major League Baseball manager to somebody who had trouble producing anything more than a whisper.

He practices his "ah's" everyday to maintain his voice just to do everyday life.  For me, the toughest part of this journey has been losing my ability to communicate.  I first thought I was having a stroke, at least,  a TIA.  

Then the neurologist who diagnosed me suggested I go through the LSVT Loud program with a speech therapist.  It's helping.  I'm not ready to give a TED talk, but who knows, I might get to that point.

What would I talk about?  My wife who I couldn't do Parkinson's without her.  My family who have been tremendously supportive.  My grandkids.  Then there's God who promises to walk beside me throughout this thing.

How do you not let Parkinsons Disease take over your life?

It started just as a simple cup of coffee after my special speech therapy for Parkinson's patients.  While sipping our dark roast at Panera on Dobie Road in Okemos, we talked about my PD diagnosis that was made just about a month ago.  

We both nodded our heads about how we have a new normal in our lives.  My usual loud and low voice can quickly degrade into a somewhat loud whisper and I walk with a real stoop.  I shuffle my feet using short steps and I'm using a walking stick to help counteract that.

The disease is something that's always there.  It could easily shroud every part of our lives.  How do you keep that from happening?

The goal is to compartmentalize.  As much as possible, give the disease the time it needs and then put it back in the pigeonhole.  

I caught myself sitting on our deck with my head down and getting depressed.  The meds made me nauseated and kept me from enjoying my grandkids.  I tried to be proactive and give myself a half hour to feel down.  Then I switched gears and thanked God for everything I had, especially family.

How would I evaluate my efforts to challenge the disease?  It's a work in progress.