Tuesday, May 8, 2012

A New Journey Begins...

Two days before I headed to Europe in March, I accompanied my husband (45 years) to an appointment with a neurologist who diagnosed his physical tremor symptoms as early stage Parkinsons Disease.

A second opinion appointment with a Dr. in Houston, TX, confirmed the diagnosis.

Following that appointment, John composed the following message for many friends and family members.  He has given me permission to post that here as well.

John Worden in Kerrville writes:
Easter, April 2012
Dear Extended Family,
After experiencing occasional tremors in my right leg over the past several months and progressively elsewhere, I have been diagnosed with early-stage Parkinson’s Disease.  I need to decide whether to start taking a recommended medication to moderate symptoms, or delay medication and participate in an observational research study to identify biomarkers of Parkinson’s Disease progression. This is obviously a bump in the road of the otherwise good health I have enjoyed for 69 years.  We live in a fallen world and Christians are not immune to injury and illness, but I firmly and unquestioningly trust my Redeemer, our Risen Lord Jesus Christ, victor over sin and all its consequences and in the goodness of His Father.  My hope is in the grace of God, not in good health, nice as that is and much for which to be grateful. I am confident, too, of the support of a loving family, friends and the community of faith in Jesus Christ. 
In Summer 2011, I began to notice occasional tremor or quivering in the muscles of my right leg when sitting at rest.  The condition continued into the fall when I mentioned it to my primary care physician at my annual physical in October.  By March the phenomena seemed to occur occasionally in my left leg as well, and I noticed my handwriting needed to be more deliberate.  I mentioned the symptoms to a doctor friend, and he urged me to see a neurologist who specializes in movement disorders.  On March 14, 2012, just days before Linda left for Europe, I saw Dr. Ron Stotz, M. D.  in Fredericksburg, TX.  After a 2-hour appointment, during which he asked  numerous questions, took an extensive medical and familial history and observed my responses to various commands, he offered a diagnosis of early-stage Parkinson’s Disease.  He explained that there is no laboratory test for PD, no blood test, no spinal fluid test, no CT scan, no MRI, no genetic or other test to definitively diagnose the condition.  And there are several types of PD.   That which manifests itself initially with tremors often progresses more slowly, but PD is a chronic, progressive, neurodegenerative disease for which there is no known cause and no cure.  Several medications are available to treat symptoms.   PD does not appear to be hereditary (I do not know of any family history of tremors; do any of you know of such Worden family history?)  It is not contagious.  It seems to occur randomly and sporadically in both men and women and more frequently in those over age 60; average onset is age 55.  However, Michael J. Fox was diagnosed with PD at age 30.  Patients with PD generally live an otherwise normal life span, however, as the disease progresses, mobility and both large and small motor skills are affected.   PD occurs when brain cells progressively fail to produce dopamine, a chemical essential to  communication between the central nervous system and muscles.  Dr. Stotz suggested that I begin taking Azilect and gave me physician’s samples for an initial month, but recommended that I not begin the medicine if I was going to seek a second opinion.   He offered the name of  Dr. Joseph Jankovic  www.jankovic.org  at the Baylor College of Medicine Parkinson’s Disease Center and Motor Disorders Clinic in Houston.  Sarah and I traveled to Houston on Sunday afternoon, April 1, and I saw Dr. Jankovic on April 2 after an intensive interview and examination by a Fellow in the Neurology Department, Dr. Melissa N. Kagnoff, M.D., M.P.H..   Their opinion confirmed Dr. Stotz’s diagnosis.  They have asked me to consider participating in a 5-year clinical observational research study to identify biomarkers of Parkinson’s disease progression, Parkinson’s Progression Markers Initiative (PPMI), sponsored by the Michael J. Fox Foundation.   After initial screenings, participation in the study would require quarterly trips to Houston.  Preferably, participants in the study would delay medication for 6-12 months, but should symptoms become disruptive to work and/or functions of daily living medication could be started sooner.  Linda will return from Europe on April 17 and then we will decide whether I should begin taking medicine or apply to participate in the PPMI study.  Our prayers for wisdom in that decision will be appreciated.  And any comment, observation or recommendation will be welcomed as well. 
I thought it best to share this news widely so you will not be surprised or puzzled if you observe Parkinson’s symptoms in my movements.

Added note from Linda:
We have decided that he will begin the process to determine if he is a candidate for the PPMI study.  

We  came to Houston yesterday for several hours of intake information gathering.  We are still here as today he is having a DATSCAN.  This is a brain imaging procedure which will determine if he has a decline in dopamine in the brain which will be quite a clear indication that his tremors are caused by Parkinsons Disease.  Results will be available by next Monday.

I hope to update this new journey for us on this blog.  We are not afraid.  We are confident that the God who has been with us all our lives will continue to be with us through the unknown future.

We are saddened by this news but are grateful that many family and friends are praying for us and offering support should that become necessary.

One sweet blessing is the offer from a niece in Houston that welcomes us to her home whenever we need a B&B there.  We enjoyed a delicious supper and long conversation after the little ones were in bed last evening.  

Now for the 4 hour drive back to Kerrville.

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