My six month Parkinson's report: Getting ready for the next part of my health journey

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I've been in somewhat of a denial about having Parkinson's Disease since being first diagnosed almost six months ago.  I kept telling myself that I couldn't have it, that the symptoms I'm feeling are just part of a crazy mix-up.

And then it hit me yesterday at a big Parkinson's event that I really have it and what I'm feeling is totally consistent with having the disease. 

I'm not saying this so people can rub two fingers together and say "this is the world's smallest violin and it's playing just for you, Wes."

My life has been turned around though.  Whereas, before I counted on my mobility and voice to be part of the world.  Crowds never bothered me.  Now too many people at the door of a restaurant can set my mind on fire.

My voice has turned into a big quiver of nothingness.  My bucket list used to be topped by a series of trips for me and my wife.  Now I'd be happy to have one normal conversation with her.  For her, I suspect it's like talking one of our grandchildren when they were two or three years old.  You pick up a word here and there, but often not much more.

I've picked up some new words along the way, including cognition.  It takes me longer than it used to for me to process the pros and cons of an issue and for me to respond to it.  It's all part of the dopamine shortage with the neural transmitters in my brain.  

I have the Parkinson's shuffle big time.  I walk with a cane using itty bitty steps.  And this brings up the subject of falling and I've had a couple, one with a walker which got away from me.  My knees show the evidence and the reminders of how easy falls can happen.  

This happened outside on the sidewalk.  Could I get up by myself?  It took me more than 20 minutes, but I did it with Gladys by my side.  I showed myself that I could do it.

What about sleep?  Constipation?  The meds?  What about the hallucinations?  

In Dearborn, we go to a church where the right stuff is being practiced and taught.  The people seem to be very warm and caring.  How do I react in social situations?  I avoid them.  My phone conversations have become terse.  I avoid them too.

Is there a good side to all this?  I pray a lot more and for a wider group of people.  In the middle of the night when I wake up I recite Psalm 23 over and over.  He is still my shepherd.  He leads me beside the still waters.  And when I walk through the valleys, He is still there.

Don't feel sorry for me.  Maybe feel sorry for Gladys for having been picked for my care provider.  She's an encourager and a servant.  And so are my kids and grandkids.  My three-old grandson notices when I have a difficult time getting off a couch and he'll stick out his arm and in his squeaky voice say to me, "I love you man."

 

 


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.  


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.


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.  


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.