Wednesday, June 5, 2013

One Man's Parkinson's Journey...

March 2013 photo - age 70 & still looking youthful
My husband was diagnosed with Parkinson's Disease 15 months ago.  Upon the recommendation of our local Doctor and others, he decided to see a renowned Parkinson's Doctor at Baylor Medical Center in Houston, TX. for a second opinion.

Dr. Joseph Jankovic confirmed the diagnosis and presented the opportunity to voluntarily join a Michael J. Fox funded PPMI -  study (Parkinsons Progression Markers Initiative).  John joined that study at Baylor Medical Center in Houston, TX  which is for people newly diagnosed with the disease, in an early stage - he was considered stage 1 - 1.5 of 5 stages - and not on Parkinson's medication.  For more info about John's thoughts as he started this journey a year ago, read a blog posted at that time.

We have traveled to Houston on a number of occasions in the past year for John to be tested, observed and evaluated. 
Those seeing him in Houston enter the data but do not share information with us.  We have not expected that as we knew that was the way the study would work.  

John agreed to not begin medication for up to a year but was free to consider medication should his symptoms warrant.  Dr. Jankovic has explained that no Parkinson's medication is neuro-protective, no medication is a cure and all medications have side effects.  At each visit, his question has been,
"Are any of your Parkinson's symptoms preventing you from doing all the things you normally do each day?"
John's answer has always been,
But his answer at his next appointment on June 19-20 will probably have changed.  He recently was teaching our Sunday morning Bible class when the tremor in his right hand was quite distracting to him and to those of us in the class.  He often kept his hand in his lap but would need to use it to turn pages which was somewhat difficult.  He later commented that it had been a struggle to keep his focus for teaching because of his tremor and the compromised vision he has which began with retinal detachment in 2002. He thinks it might be time to consider medication.  

Before our upcoming trip to Houston for his one-year check-up, he has decided to participate in another opportunity he knows is Biblical. 

He explained that in the following way to a number of friends:
Fellow travelers,
In an effort to be obedient to James 5:13-16, I have asked Pastor Wheat to lead in offering prayer for healing, health and strength for me in my journey with Parkinson’s disease and compromised vision.  We have agreed that Wednesday night's 6:00 PM prayer time would be an appropriate time and place for such prayer and I wanted you to be aware.
Here’s an update:
I continue to participate in the Parkinson’s Progression Marker Initiative observational study sponsored by the Michael J. Fox Foundation for Parkinsons Research at the Baylor College of Medicine in Houston.  My next appointment, the first annual checkup, Part 1 is June 19-20; Part 2 is July 9.  While I have not taken any medication to date, I anticipate beginning a regimen of medication to mitigate symptoms in mid-July if not before.  My vision is stable though still 20/400 in my left eye due to retinal scar tissue.  Thank you for your concern, prayers, and companionship on this journey.
 James 5: 13 - 16
  13 Is anyone among you in trouble? Let them pray. Is anyone happy? Let them sing songs of praise. 14 Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. 15 And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. 16 Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.
We do not know how tonight's prayers will be answered but we open ourselves to whatever is the will of God.  We remain committed to being faithful followers no matter the path he has for us.  We pray for healing, faith and opportunities to give the Lord glory and honor.  

Please join our band of prayer warriors.  

With grateful hearts, we serve our savior.


Jennifer @ said...


I am joining you tonight in prayer, interceding from Iowa. Sending love to you...

Lainie Johnson said...

I will keep you & John & your family in prayer.

Deidra Riggs said...

So glad Jennifer pointed me in this direction today. Yes. I'm praying too. Honored to stand in the gap on your behalf.

Laura Boggess said...


I add my voice to these prayers offered here. Sending so much love to you and John.

Cheryl Smith said...

Saying prayers from Virginia tonight, too, Linda. May the God of all healing come and be with John in the days ahead! Sending love your way!

Dena Dyer said...

I'm praying, too, Linda. Thanks for sharing this part of your journey with us. :)