Can I slow down the aging process to ease my way into becoming elderly? Join me on this journey.

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

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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:

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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

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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

 

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

 

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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

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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?

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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

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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?

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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?

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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?

 

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

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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

 

 

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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?

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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.

 

 


Getting back into the conversations of daily life with Parkinson's Disease

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Most Saturday nights when we go to the services at Trinity Church in Lansing, I avoid verbal communication with just about everybody, except my wife.  Why?  My Parkinson's Disease (PD) has reduced the volume of my voice to just about a whisper and a strained one at that.  With PD, I've found myself withdrawing more and more from everyday verbal communication.

I found myself becoming more and more socially isolated where I only felt comfortable talking with my wife Gladys.  This reduced me to Facebook conversations where I talked with my fingertips.

Then Dr. Sidropoulos who diagnosed me responded by writing a script for me to get special speech therapy for PD patients.  It's called LSVT Loud.  The therapy sessions concentrate on building breath strength through a variety of exercises under the tutelage of my therapist Nicole.  She's incredibly patient and knowledgeable.

It took a couple of sessions to get the point of how much my voice strength had deteriorated and that when I went through my "ahhh. . ." exercises that 80 decibels was not screaming.

So, is it working?  I've asked my wife and others if they had any trouble understanding me since I've started therapy.  Their responses have been an encouragement big time.  I'm starting to feel more empowered to jump back into conversations, rather than avoid them, especially with one set of grandkids coming for our Easter celebration.  I look forward to reading books with them again.

My wife helps me with my homework at the kitchen table.  If you're standing on our deck and you hear screaming, you'll know what it is. Actually, my therapist says my perception of loudness will change as my brain reprograms itself.

Next week:  Boxing for Parkinson's patients and maybe a support group. Goal is to beat the disease and not give it more of a chance to beat me.


How do I feel one week after being diagnosed with Parkinson's Disease?

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I wish I would have paid closer attention in my high school and community college biology classes back in the sixties.  As I move far along in my seventies I realize that my body is being challenged by old age.  

When my physical therapist evaluated me earlier this year, he asked me if I had ever been evaluated for Parkinson's Disease.  One of my M.D.s asked if I wanted a referral for a neurologist.  I'm glad I did.

I was diagnosed exactly a week ago.  Since then I've experienced various emotions.  My wife says, it's part of my new normal.  I feel like a deer in the headlights late at night on a Michigan highway.  I'm not sure I know which way to move or if I really want to.

So far, I've started the Parkinson's meds to restore dopamine to my neurons to help  all sorts of body functions.  I've developed a severe stoop when I walk most of the time.  I have trouble getting off soft chairs and couches and I've had a problem with severe constipation during the past few years.

My declining voice which has been reduced to a whisper most of the time has been a real problem.  Used to have a low voice, it's barely understandable.  I'm going to a speech therapist for special retraining of my voice.  It's LSVT Loud designed for Parkinson's patients.

Then there's the joint pain which seems to be getting better as I take the meds.  I never had hip pain until the past few months.  Tonight, it's gone, but I'm not sure for how long.

How do I feel about the future?  The apostle Paul said in Romans that with the Holy Spirit's help, we need to be "Joyful in hope and patient in affliction."  I want to be joyful in all this.  I won't be dancing down the street, but with God's help I can be joyful in hope.

 


"God give me the grace to trust you about my Parkinson's Disease"

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I was walking out to the parking lots at the clinic for the MSU School for Human Medicine while talking to my daughter Krista about my diagnosis of having Parkinson’s Disease when she started to cry.  I had everything I could do to not lose it myself. 
 
My appointment had been with a neurologist who specializes in diagnosing and treating the disease.  He said, it was too soon to make a judgement about how advanced the disease had become.  Over the past several months, it had become more and more difficult to get off our soft couch and it seemed like I was becoming a prisoner of our commode to take a poop.  I couldn’t get off without multiple tries.
 
My voice had disintegrated to the point where a once strong tone was reduced to an almost whisper.  This had been developing for several months.  I walked with itty-bitty steps and it was with a real stooped look putting a tension on my back that was untenable.  My primary care provider prescribed 20 physical therapy sessions.  It helped, but wasn’t the answer.
 
The physical therapist asked me if I had ever been evaluated for Parkinson’s.  I hadn’t.  PT was hard for me at times.  But I saw the consequences of long-standing poor posture.  I got a referral to a neurologist from my doctor who did a biopsy on my tongue.  She was very understanding of the symptoms I described.
 
After his diagnosis yesterday, the doctor prescribed carbidopa-levodopa.  If I understand correctly, it restores the dopamine in my neurons which is key in transmitting commands to my body.
 
So what does that mean for me and my wife Gladys?
 
For me, it’s done wonders for my prayer life.  I’m much more sensitive to others with health problems and I pray for them faithfully.  I know I’m getting older and that I’ve been blessed in the ailments I’ve had.  However, the list if growing and this is a big one.
 
I remember what God said in Romans 12:12.  “Be joyful in hope, patient in affliction and faithful in prayer.”
 
My various biopsies of stuff inside my head came back benign.  A lot of people were praying for me.  I intend with the help of God to do the same for others.  More later.

I'm having to digest the news about my carotid arteries

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I've been back from the appointment with my vascular surgeon for a couple of hours.  I've had time to digest a reality that's part of me.  My carotid arteries are hardening, one totally and the other partially.

My surgeon said the doppler taken yesterday showed that my left carotid is still completely blocked and always will be.  My right was described by the doppler techs as less than 50 percent.  But Dr. Controneo said after watching the video he would estimate the flow as being 20 to 30 percent restricted.

What does this mean?  I'll be taking a blood thinner for the rest of my life unless the blockage becomes greater.  They would then put in a stent to clear out the blockage on the right side.

My life goes back to a new normal which will be shaped by my appointment with a neurologist on Monday to check if my brain tumor--a menginoma--has taken on a new twist or if I have Parkinson's as a couple of healthcare providers have suggested as a possibility.

Meanwhile, I'm getting ready to walk outside with my wife.  It's a beautiful Michigan spring day and I need to stay active more than ever.

What's next?  I have no idea, other than I need to keep praying and listening for God and his promise to protect and walk beside me.  Maybe I'll sing a little louder in church this weekend.

I have reason to.  He Is Risen!