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5 posts from April 2019

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.