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After my first book, "It’s All In Your Head Living and Coping With
Parkinson’s Disease, I had no idea if it would be a success or not. Much to
my surprise it was. But my life has changed sense that publication in 1999
due to the progression of the disease. Things that I thought I should know,
I didn’t. I t started to leave its mark on my whole outlook of living and
dealing with Parkinson’s and my life in general.. Living in today society
and how it af-fects our relationships with others, mainly family and
friends. For the first time sense my diagnoses and early years of my
disease, I really felt that there was a new attitude and approach to my
everyday activities and dealing with situations that I had no control
over.. It was like I was a different person and attitudes, and it
contin-ues at this writing. At times I go into rages for really no apparent
reason. I get upset over meaningless things. This is especially true with
situations involving my wife of 32 years. Gen-erally a very quiet reserved
and calm person, at times it is like there is two of me. I became very
concerned about this new revelation. Denial, anger, pity and fear once
again began to run through my body.. This may have been a new turn of
events but at the same time I tell myself this isn’t the true me. I t has
to be the disease process. I soon discovered that for the my wife it was
becoming a terrible hardship. Fewer words were spoken between us. I think
that I was reaching for anything and this will leave a stamp on my soul as
she is my lifetime partner. Parkinson’s disease and my life began playing
itself back to me in ful detail, empha-sizing those last months leading to
this discovery. Suddenly my mind had started to become a real problem, and
was taking me down. The people in my life were starting to doubt me more
and more. My life was being torn apart and I really didn’t no how to deal
with it. I tried to deal with the fear, but instead I became frantic with
the thought. The mind games started to consume me and this was probably my
reason for lashing out. I was afraid of losing my independence. The thought
of losing a future with those that I care the most was very hard to swallow
and will be forever. Then I began to remember the words that my mother had
instilled in me and her attitude is mine. "We were not issued any
guarantees for our life and we must carry on de-spite t he situation. It
wasn’t at this moment that I stepped out of this fog, but it is a
begin-ning point Unfortunately I don’t possess all the attributes one needs
to retain such a gift , but only few of them would get me started on the
rode back. Helplessness is a very empty time and these feelings are ones
that we go through when trying to deal with chronic illness and I don’t
wish them on anyone but one the other side they must be dealt with as well.
My mind and body must be in tune and when this loss of control took place
it was one of the horrific transformations I had experienced sense my
diag-noses thirty eight years ago. It was like starting all over again. But
I realized that I had too deal with it. I had worked hard and now the
irritability and fear were part of me again . Was-n’t I too strong to have
this happen? No, I am no different than any other person with Park-inson’s
and I have to keep reminding myself of this daily. I asked myself over and
over, un-derstanding but not understanding. How could I, someone who had
spent all of his adult life with Parkinson’s , helping others to help
themselfs began to think I should be any different. Although this wasn’t in
my plans, I remembered my pledge and I will survive and it is a constant
reminder every time I give a talk on "Coping With Parkinson’s" and tell my
story. Of course I feel sorry for myself at times, hey I no different and
taking it out on those that you love, just because your not always aware of
your mood or the workings of your brain, isn’t fair to them or yourself.
This loss of control is something I regret but what I know now and I try to
understand and try to assure them that I’m not doing it intentionally. I
try harder and I realize that I can’t take the entire burden of this
disease. Yet through all of these misgivings I have not lost my love of
life and I have done many things that othershaven’t been able too. I want
to  convey the message of hope ask that this disease isn’t about
individuals, it is about all of us living and coping together in a manner
we can be proud of.

Coping & Personality Change
Mr Russ Ahlstrom; YOPA Advisor

Positron emission tomography, a technique first developed in the 1970s, is
the first technology to provide major insight into the metabolic behavior
of living tissue. It has been particularly helpful in understanding
neurologic disease in living human beings. In contrast to magnetic
resonance imaging and computerized axial tomographic scanning which provide
highly detailed static, structural images of the human brain, positron
emission tomography is unique in its ability to render substantial insights
into the functional activities of an intact human brain. The technique is
dependent upon the use of specific radioactive isotopes, such as carbon-11,
oxygen-15, fluorine-18 and bromine-75, which emit positrons. Positrons are
anti-electrons, the antimatter equivalent of electrons. When a positron
collides with electrons from surrounding atoms, both subatomic particles
are annihilated producing gamma radia-tion, which is detected by the PET
(positron emission tomographic) scanner's radioactive detectors. Via
computer algorithms operating in three-dimensional space, the information
obtained from these radioactive detectors is used to construct highly
detailed maps of the metabolic activity of the human brain. Depending upon
the type of positron emitting radio-active material that is injected into
the patient, one is able to obtain information concerning specific
metabolic processes, such as the metabolism of sugars, the consumption of
oxygen, blood flow, synaptic activity, and the activity of various brain
neurotransmitters, including dopamine. In the case of Parkinson's disease,
the most widely employed radioactive material for understanding dopamine
metabolism with PET scanning is fluorodopa, labeled with fluorine-18.
Fluorodopa is metabolized via dopa decarboxylase, the same metabolic
pathway that metabolizes levodopa. The resultant radioactive, positron
emitting, fluorinated levodopa accumulates within the striatum (caudate and
putamen), releasing radioactive gamma rays that are detected by the PET
scanner. This accumulation of radioactive fluorinated levodopa can be
measured very quantitatively by the PET scanner. There is a direct
correla-tion between the measured level of radioactive levodopa
accumulation and the Parkinson's disease patient’s motor function. From
this brief discussion, one can see how fluorodopa PET scanning might be
very useful in understanding various aspects of Parkinson's disease.
Consequently, this technol-ogy has provided us tremendous insights into
many features of Parkinson's disease in the living human patient. It is
also evident that this technology can be used for the radiographic
confirmation of the diagnosis of Parkinson's disease, given that the
underlying neurochemical abnormality in Parkinson's disease is dopamine
deficiency, which is directly demonstrable by this technique. Nonetheless,
the diagnosis of Parkinson's disease remains a clinical one, dependent upon
the demonstration of well-defined clinical features of the disorder and the
lack of other findings that would suggest an alternative disorder.
Conventional neuroimaging with mag-netic
resonance scanning (MRI) or computerized axial tomographic scanning (CT) is
unneces-sary and not specifically indicated for the diagnosis of
Parkinson's disease. These technolo-gies are frequently utilized to exclude
a variety of structural abnormalities that might simu-late the findings of
Parkinson's disease, but are most certainly not necessary for the diagnosis
of the disorder in the vast majority of patients.

Positron Emission Tomography (PET) in the Diagnosis of PD
By Stephen M. Gollomp. M.D.
Clinical Professor of Neurology, Thomas Jefferson Hospital

There is no question that fluorodopa PET scanning can reliably support a
diagnosis of Park-inson’s disease in the clinical setting where there are
features of the disorder without atypi-cal signs. However, there is also
little question that the study is not necessary for the ma-jority of
patients. In those patients where clinical diagnosis is uncertain or when
there are particular research questions to be answered, fluorodopa PET
scanning is appropriate and can be very useful. For those patients with
atypical signs accompanying the extrapyrami-dal disorder, it may be
necessary to perform additional metabolic imaging with an isotope
(fluoro-deoxy-glucose) looking metabolism of sugar within the brain
(glucose). In summary, metabolic imaging of the brain with PET scanning can
be very useful in sup-porting or refuting a specific diagnosis of
idiopathic Parkinson’s disease and further deline-ating the possibility of
an atypical form of parkinsonism. In the majority of patients, nei-ther
metabolic nor structural imaging is necessary to reliably reach a
diagnosis. Websites containing information on PET scanning:
(www.ctipowersolutions.com/PatientPortal/zportal/portals/pat/)
infoforphysician
(www.spring.parkinsons.org.uk/SPRING_Times/20/04.html)

There is a misconception among the Parkinson’s community (patients &
doctors) that there is no scientific test that will diagnose Parkinson’s.
In fact the technology does exist and has for over 15 years. "The amino
acid [F-18] Fluorodeoxyglucose (FDG) and PET imaging of the basal ganglia
is a proven technique in positively diagnosing or “un-diagnosing”
Parkinson’s. FDOPA PET images of the brain clearly show if your brain has a
deficiency in dopamine synthesis. If it doesn’t, then you do not suffer
from Parkinson’s, and your symptoms can be further re-searched, diagnosed,
and treated more effectively." -Source: UCLA Department of Molecular &
Medical Pharmacology  Parkinson’s Disease can be a difficult burden to bear
for all of us, playing havoc on our minds and bodies. Ironically up to 25%
of those with Parkinson’s are misdiagnosed. This misdiag-nosis rate is fact
based on post-mortem autopsy. Most of us do not wish to wait that long to
find out if our diagnosis is indeed Parkinson’s and if indeed we are being
treated correctly. A FDOPA PET SCAN can decrease the 25% misdiagnosis,
re-diagnosis, track dopamine loss, and even diagnosis early onset "before"
symptoms appear. Early diagnosis can provide the patient access to
therapies, which are more effective earlier in the disease. I have been
approved for my PET which will be conducted at UCLA within the next two
months. While I am fairly certain that this will not change my diagnosis it
will allow me to visibly see the dopamine loss that is causing this
"Parkinson's disease" and give me visual proof of the diagnosis vice taping
my fingers or wiggling my toes each time I see a neurolo-gist. PET can, and
has, indicate with a high degree of accuracy if a movement disorder is
Parkin-son’s disease or another type of disorder. F-DOPA and FDG PET scans
cost on the average $2100 per test. The test is being more widely
recognized by health insurance companies as the word gets out on the
benefits of the test. MRI's, the test that almost all PWP's undergo as
"routine" cost between $1600 and $1800. Is the $500 cost difference, on
average, worth NOT having an F-DOPA PET scan? Please do the research on
this test and encourage your doctor to pursue it for you. Many fa-cilities
across the US currently conduct FDOPA PET SCANS. A list of these facilities
may be found at: (www.snidd.org/petsearchresults.cfm?radiotracerid) For
more information on FDOPA PET SCANS please visit the information center on
(www.youngparkinsons.com)

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janet paterson: an akinetic rigid subtype, albeit primarily perky, parky
pd: 56-41-37 cd: 56-44-43 tel: 613-256-8340 email: [log in to unmask]
my newsletter: http://groups.yahoo.com/group/newvoicenews/
my website: http://www.geocities.com/janet313/

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