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,
SHORT VERSION:
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.
LONG VERSION:
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.
LONGER VERSION:
www.pdf.org
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.
