Aftershock-How to survive an unsuccessful DBS
Created by DESTINYELLEN
What's Being Discussed Here?  Hyperbaric oxygen therapy, Muscle tension, Low
Dose Naltrexone, Deep brain stimulation, Oxygen, Physical Therapy, Hbot,
study, NOW, Align, Naltrexone, Pain, Align
Dear Friends,

After reading Linda's note, I have decided to post our story on DBS and
recovery.  Glenn Beck's video on youtube reminded me of the importance of
working towards making our health services better for all.  Below is my note
to him and a synopsis of our family story. You can see his video at
www.glennbeck.com (Beck from the dead is the title)
Dear Mr. Beck,
It saddened me to see your video and fully understand your concerns and
personal suffering.
I've included a synopsis of what my family and I have gone through and the
positive things we have found to assist us and many other people.
We wish you a speedy recovery and join you in your battle for better
healthcare for all in America.  We also thank you for the many hours of
insightful entertainment you give us each week.
god bless and thank you,
Destiny

Aftershock- How to survive an unsuccessful DBS
My father, Bentley, suffered a massive hemorraghic stroke during the second
lead placement in a double-sided deep brain stimulation (DBS) surgery for
Parkinson's on May 14, 2004.  Due to the severity of his condition, he never
had the second surgery to install the battery packs and turn on the
stimulators.
Right after Bentley's stroke we realized that if we did not step in, he
would die. The hospital staff was overwhelmed and understaffed and hoping
for help from family or friends.  Bentley's new life now required assistance
24 hours a day.
When you tell a physical therapist or doctor that your loved one has
Parkinson's and a stroke, they are kind and helpful, but they know the
statistics are not on your side.  Parkinson's is a progressively
debilitating disease that will eventually kill you after years of suffering.
Now, add that to being fully paralyzed on one side and all bets are off.
Bentley survived the ICU and Brain Trauma units, a nursing home and a second
hospitalization with us by his side.  After six weeks we brought him home,
where everyone would rather be.  Healing in a loving, familiar environment
was his ticket to recovery and our roller coaster medical education learning
curve.
He couldn't eat or drink and slept most of the time, but by October he was
more awake, had recovered his right side and was eating carefully blended
foods.  A friend of ours had been asking us to look into a drug called LDN -
low dose naltrexone (www.lowdosenaltrexone.org) to treat his Parkinson's.
We felt we were on the right course and did not want to try anything that
might upset Ben's progress.  But then, his breathing began to shudder.  This
was a new symptom from the muscle tension around his lungs.  We feared that
we had saved his life from the stroke only to lose him to Parkinson's.  We
reconsidered LDN since the side effects were minimal and the cost was less
than $1.00 a day.  Within days, the muscle tension that was affecting his
breathing and causing tremendous stiffness and pain, started to dissipate
and his breathing returned to normal. Slowly we watched as LDN saved his
life and allowed us to lower his PD meds by more than 60%.
According to Dr. Zagon, LDN is an opioid antagonist (it blocks opioids from
the opioid receptors in your body) that tricks our biological systems into
restoring homeostasis (i.e., the body's normal equilibrium).  Naltrexone is
currently approved by the Food and Drug Administration (FDA) for the
treatment of alcoholism and opioid addiction.  However, when used at much
smaller doses (approximately one tenth of the dose used for the treatment of
addiction), it has shown remarkable effects in alleviating pain, muscle
tension, and other physically debilitating symptoms that occur with MS, PD,
Crohn's, many forms of arthiritis, Lupis and many other diseases. (Dr. Zagon
is Professor of Neural and Behavioral Sciences at Pennsylvania State
University, Hershey Medical Center)
The following year we noticed Bentley's stroke symptoms from the weakening
left side were getting worse.  We could no longer understand Bentley when he
spoke and he nearly choked every time he ate. We tried everything from
physical therapy, massage and constant stretching, but nothing seemed to
work other than medication.  We thought if we had been lucky enough to find
LDN for Parkinson's maybe we could find something for stroke.  Researching
on the internet and many phone calls later we decided that we would try
Hyperbaric Oxygen Therapy (HBOT).
"According to a recent study published in the American Journal of
Physiology-Heart and Circulation Physiology,
(http://ajpheart.physiology.org) hyperbaric oxygen treatments increases by
800% the number of stem cells circulating in a patient's body. Stem cells,
also called progenitor cells, are important players in repairing the body
after injury and in tissue regeneration. Stem cells exist in the bone marrow
and are capable of changing their characteristics to become part of many
different organs and tissues. When a body part is injured, stem cells are
mobilized and provide the cells necessary for the healing process to occur.
Hyperbaric oxygen therapy (HBOT) provides an important trigger or stimulus
for this mobilization. "This is the safest way clinically to increase stem
cell circulation, far safer than any of the pharmaceutical options," said
Stephen Thom, MD, Ph.D., Professor of Emergency Medicine at the University
of Pennsylvania School of Medicine, lead author of the study. "This study
provides information on the fundamental mechanisms for hyperbaric oxygen and
offers a new theoretical therapeutic option for mobilizing stem cells... We
reproduced the observations from humans in animals in order to identify the
mechanism for the hyperbaric oxygen effect."
So in addition to increasing blood supply and reducing the damaging effects
of free radicals, this is yet another mechanism explaining the effectiveness
of hyperbaric oxygen therapy in a variety of brain disorders including head
trauma, stroke, multiple sclerosis, hypoxic brain injury, Parkinson's
disease, cerebral palsy and vascular dementia. (Perlmutter Health Center)
After the first treatment, Bentley seemed happier and more relaxed.  After
five weeks of treatment, we decided that we had to find a way to provide
this life enhancing therapy in Medford.  It took one year, but we finally
found a hyperbaric tank to use for home therapy and we are now able to
manage his tone and spasticity by only using HBOT. One of the leading
experts in hyperbaric oxygen therapy, Dr. Paul Harch
(www.harchhyperbarics.com) we have been very fortunate to have read his
book, The Oxygen Revolution and spoken with him regarding HBOT and its
amazing potential.
My mother, husband and I have come together to help my dad, so we can
continue to have a positive life together.  We are living this process with
laughter, hard work, tears and lots of love.  We have learned that we are
each responsible for researching and understanding our own healthcare.
Being an active participant is the best way to work with your healthcare
team.  Our tremendous battle has been blessed with hope for the future and a
reasonable life in the present by Bentley's positive response to these
amazing understudied therapies.
My family and I believe there is great hope for the Parkinson's community.
My father and many other folks with PD are living it.
this post was last edited by DESTINYELLEN on Jan 05, 2008 03:39PM

Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
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