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!


Just got done with the doppler on my carotids and learned some stuff

 

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We got home from the doppler test on my left and right carotid arteries.  The unofficial good news is that the blockages haven't gotten any worse.  Of course, my left carotid is completely blocked and that won't change and the right is still letting blood flow through.  Tomorrow, we will find out what percentage of the artery is blocked.  It had been 20 percent.

The other good news is that humans are created with a redundant set of arteries in the neck if one gets blocked.  That's what happened on my left side.  Arteries grew to replace my blocked one and its supplying blood to my face and my eyes.  And then there's the Circle of Willis which takes over when needed.

I don't pretend to understand this all, but I'm impressed with the way God created humans.  There's backup circulation at least for the carotids.  I'm anxious to learn more.

Tomorrow, I have an appointment with the vascular surgeon to make all this official.


I feel my gut tightening up about tomorrow and next week at the vascular surgeon and the neurologist

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My grandson Xavier gave me this coffee mug and I'll be thinking about what it says when I have a doppler taken of my carotid arteries tomorrow morning.  I'll also be thinking about the phrase from the Ephesians chapter one which can be summarized by four words "Remember Who You Are."

And I'll be thinking about it next week when I have a hour-and-a-half neurologist's  appointment to determine if I have Parkinson's Disease.  For me my health continues to be a distraction.

In recent weeks, I have had increasing difficulty in being comfortably mobile because of skeletal stiffness.  My voice has changed from being strong to barely a whisper.  My balance is way off .  It increased with almost twenty visits to a physical therapy clinic.  My gait is not normal with me walk way stooped over.

Back to my carotids, one is completely blocked and the other a few months ago was 20 percent.  Then there's my eyes.  My cornea transplant seems to be working most of the time.  And my glaucoma affects my vision.

What does all this mean as my gut tightens not knowing what the future will bring?  I know that God selected me as his dearly loved son and I'll be grabbing onto that hope.  

Will I continue to write about my health?  You bet.  Doing so, helps me sort out my feelings and to share with my grandkids that people get older and sometimes, they get sick.

 


My newborn grandson Theo talked me out

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March 6, 2019, Wednesday just before lunch

Dear Theo--

Let me introduce myself.  I'm your mother's father which makes me one of your two grandfathers.  Only six people in the whole world can call me grandpa and you're one of them.  Your grandma, your mother's mom, is Gladys.  

You are now a member of our family.  One of the greatest joys I've had in my life is being part of this family.  It's a place where you get a big part of your identity.  You'll always be known as the son of Adam and Krista.  It's also a source of strength and encouragement and laughter.

You and I talked ourselves out the day you came home from the hospital.  We talked about everything, including your parents and your  brothers and sisters and food and countries to visit and cars to drive.  After more than an hour I nodded off with your eyes still open.  You are a good listener.

I love you little man.  Jesus loves you too and so do your parents and siblings, as well as your other grandparents.  You are loved.  Never forget that.  Remember Who You Are. 

We'll talk more later.

Again, welcome to our family which is now made better by your arrival.

Love,

Grandpa Thorp

 


How much do you save by cutting hair at home?

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I needed a haircut.  I don't have much hair left, but a little growth on the top of my head can make me look really shabby.  A few years ago, we bought clippers and my wife started cutting it.  Because of the shape of my head, I have the cue ball look.  But, it looks much better.

Now where do we go for lunch with the money we saved by DIY.


Physical therapy has made me aware of how fast aging happens

 

As we were walking through our almost rural neighborhood, I noticed that I was bending forward more and more and my back was starting to hurt.  It got worse.  And when I went for my annual physical, my primary care provider suggested physical therapy.

Having a really strong desire to fix my awkward walking that made me look like more of an old man than I actually am, I readily agreed to go.  I was hesitant at first not knowing what to expect.

I can see the light at the end of the tunnel where this can be fixed.  Our below zero weather with a horrendous windchill has kept me from any real deep walks, but I'm noticing improvements.  

Walking through the doors of Orthopedic Rehab Specialists in Holt here's what I found.  My concerns about being judged for my age and my lack of physical fitness were unfounded.  The physical therapists and their aides are really up people.  

My main PT is Aaron Holly, a fortyish health care provider, who has been very patient with me and forthcoming about challenges that I might face.  Then there's Joanna, a PT who has been always up and encouraging and very willing to explain what she's doing.

I get a special t-shirt when I "graduate" from my PT treatment.  I'll wear it with pride and as a reminder that I can slow down this aging thing.  I have to keep up the effort.


The last known picture of the six "Moll Sisters" together--including my mother

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My mom--Frieda--had five sisters who grew-up in the Thumb of Michigan.  Looking at this picture makes me wish I would have had iPhone with video.  These women had a real story to tell about growing up on a sugar beet farm from the time the oldest of them was real young to the youngest from the early 1900s to the early 1930s.

Their family of twelve siblings, including six brothers were real heroes who were the grandchildren of immigrants from Germany.  They lived through extreme poverty, backbreaking work from the time they were children and the loss of both parents at a very young age.

They kept the family together after moving to Bay City.  With the deaths of my mom and her brothers and sisters many if not most of the details were lost.

Theirs is a story that would have rivaled Little House on the Prairie.  Their parents--my maternal grandfather and grandmother died way before I was born.


Bartimaeus shows me that I need to change the way I pray for myself and for others

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I spent a lot of time this past year with an old, blind beggar named Bartimaeus who was blind on the road out of Jericho and who had the temerity to shout out to Jesus to heal his blindness.  This past year I read and reread this story because of my rapidly declining vision.  

As I waited to be admitted to the University of Michigan Kresge Eye Center, Pastor David Maier and his wife Pat came off the elevator.  I was taken aback a little when he prayed for God to heal my vision.  I was a fallen away Lutheran and he was the head of the Lutheran Church-Missouri Synod in Michigan.  He prayed anyways with a great deal of passion.

He prayed for the transplant surgeon and all the people involved in this ever so delicate surgery when somebody died in order for me to have their cornea.

As I face more things going awry in my head and neck such as plugged carotid arteries, a large mass on my tongue and a goiter working on becoming a softball, I can see from this post that I need to pray like Bartimaeus, a plain old beggar on the side of the road in Israel.

I'm not a fancy church guy who can quote much of the Bible from memory.  I grew up on the poorest side of Bay City, right on the river.  I'm not a big contributor to the church, but I know that Jesus loves me.

Pastor Maier connects the dots with this post.  It's practical and real life and it's worth of sharing.

 


Here's why we bought five quarts of plain yogurt yesterday at Meijers

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I started this episode of my weight loss journey tipping the scales at the high 220s and yesterday I showed I was down to 187.  One of my enemies is snacking, particularly after supper.  As I inch towards my goal of 175, I've become more dependent on plain yogurt and frozen fruit pieces to satiate my desire for food.  And this includes pomegranate seeds sprinkled on top.  We also have it at meals.

When you think of plain yogurt, your first reaction might be "yuck."  At first, it seems tasteless but after awhile, you can taste its nuances and layers, especially with the fruit.

After I reach my goal, I know I need to keep it off because of my carotid artery disease.  One is blocked 100 percent and the other less than 20.  I know that if I'm not at peak health for a 72 years old, I would be a prime candidate for a stroke.  That's motivating.

Now, I need to get the exercise in line.

 


Was MSU President John Engler a bully when he was in the Michigan Legislature and when he was governor?

My column about Acting MSU President John Engler when he was a House member in this twenties.
As a reporter at the State Capitol, I wrote a lot of columns with some opinion that I tried to back up with fact. Is this one about John Engler when he was in the Michigan House to irreverent?


At the MSU School of Journalism, they called it a string book.  It held clippings of what you had published in a newspaper and it was usually bound together strings in two or three places on the margin.  Over the years, my string book morphed into a several and then into a collection of good sized boxes.  It survived several moves and a couple of marriages.

I've been paring down my collection of columns and stories I wrote.  I found this one written when former Gov. Engler was a member of the Michigan House of Representatives while he was in his late twenties.  He's now the acting president of MSU.  

His leadership style morphed into what many have described as skillful bullying.  Was it intimidation or just being an effective leader?

Was Engler a role model for Trump or vice versa?  The stories are legend.  


Meet my grandpa--Charles Moll--my mother's dad from Michigan's Thumb

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I never met my grandpa or grandma on my mother's side, but this picture makes me regret that we never got acquainted.  This picture makes me regret that I never heard his stories about being a sugar beet farmer in Michigan's Thumb where my mom grew up.  He's on the left and his brother is in the middle.  As I become more and more experienced at being a grandparent, I want my six grandkids to know me and my life.  This old photo is part of a collection that my mother left me when she died.