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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.