Wordl Parkinson Congress podcasts: http://www.worldpdcoalition.org/?page=CountdownPodcasts
National Parkinsons Foundation www.Parkinson.org:
Michael J Fox Foundation: Ask your MD https://www.michaeljfox.org/understanding-parkinsons/ask_md.html
Tuesday, August 4, 2015
Friday, February 6, 2015
Robin Williams:Depression, Suicide & Our Shared Parkinson's
Robin Williams: Depression, Suicide and Our Shared Parkinson’s
Like millions of others, I’ve found myself deeply sad and surprisingly preoccupied with Robin Williams’ suicide, scouring news articles and brooding over possible explanations for his “tipping point.” (As a licensed CSW and family therapist, retired due to my own Parkinson’s, this kind of speculation is unsurprising.) I loved Robin Williams! He was such a brilliant, funny, gifted comic and improvisator, and his performance at Brooklyn’s BAM 6 months after 9/11 gave me my first belly laughs since that day of horror. For that, I will be forever indebted to him. But, the news today, as I awoke from an afternoon nap, that Robin Williams was in the early stages of Parkinson’s Disease, blew me away.
On Robin Williams: Depression, Suicide and Our Shared Parkinson’s
Like millions of others, I’ve found myself deeply sad and surprisingly preoccupied with Robin Williams’ suicide, scouring news articles and brooding over possible explanations for his “tipping point.” (As a licensed CSW and family therapist, retired due to my own Parkinson’s, this kind of speculation is unsurprising.) I loved Robin Williams! He was such a brilliant, funny, gifted comic and improvisator, and his performance at Brooklyn’s BAM 6 months after 9/11 gave me my first belly laughs since that day of horror. For that, I will be forever indebted to him. But, the news today, as I awoke from an afternoon nap, that Robin Williams was in the early stages of Parkinson’s Disease, blew me away.
It was a devastating revelation, because my personal guess is that Williams wasn't told that depression is one of the lesser-known, but common, and easily treated Parkinson's symptoms, as I learned early into my own PD experience. (I was diagnosed 15 years ago). His suicide is such a terrible, terrible tragedy, and a wake-up call to physicians and institutions of higher education to educate themselves, their trainees, and the general public about the many non-motor, debilitating symptoms which can signal the arrival of young-onset-Parkinson's, especially in adults over 30. Not doing so is patently and ethically irresponsible and potential dangerous medical practice, as unrecognized organic, treatable depression with identifiable organic origins can lead to suicide.
These earliest symptoms of Parkinson’s -not infrequently-can include insomnia, depression, apathy, anxiety, the loss of a sense of smell, a softening of the voice, a stiffening of facial muscles (often called “a facial mask”), fatigue, and the gradual appearance of slow cognitive changes which can resemble Attention Deficit Disorder. These new symptoms can feel quite unsettling to those used to
highly effective functioning in their work and home lives, because multi-tasking skills can often begin to go downhill as Parkinson’s takes root in the nervous system. Many people who are quite successful in their careers, (like Robin Willams, I suspect,) can feel mystified by a growing depression or new anxieties that may seem oddly disconnected from an otherwise relatively happy life. In addition, those who have been previously highly competent and organized can begin to find the completion of tasks somewhat difficult, and experience a new and puzzling sense of disorganization. Their intelligence and creativity is still available to them, but they inaccurately interpret these new behaviors as the onset of early Alzheimer’s, and, frightened, keep silent about these changes. Silence and hidden distress about one’s possible mental deterioration can lead to thoughts or acts of suicide.
Four years into my own PD diagnosis, I was lucky enough to attend a presentation at Beth Israel Hospital in NYC, about cognitive changes being part of a common Parkinson’s package. These
changes can include depression (which can appear as crankiness), and a loss of motivation and apathy. The presenters emphasized that not treating these syndromes can interfere with our ability to keep ourselves otherwise healthy, and with our relationships with those who we live with, along with our other support systems. I recognized some of this to be true in my case, and began treatment with an anti-depressant. Two months later, I was back to my old busy self; parent of a special-needs, pre-teenager; a part-time, private-practice family therapist; a resident-poet in the public schools; a writer; and a political activist. My new treatment also gave me the energy and hopefulness to attend the new, free Parkinson’s dance classes offered by Brooklyn Parkinsons Group at the Mark Morris Dance building. My Parkinson’s still slowed me down, but, depression now lifted, I felt able to take on the world again, and do what I needed to do to live as fully as I could.
The simple truth is this: young, working, vital folks in their 30’s, 40’s, 50’s and 60’s can develop Parkinson’s; it is not only a disease of the elderly! Furthermore, a shaky hand (tremor), is not present in everyone's PD, but many lesser known motor and cognitive symptoms can be evident, including all of those mentioned above. Thus, for a patient to report the perplexing appearance of any of these aforementioned cognitive and emotional distresses, coupled with a slowed gait, or the softening of her/his voice, or a friend's observation of a limp, or one arm not swinging when one walks, or one hand not typing accurately, anymore, or one arm no longer accurately throwing a ball, can serve as an alarm to recommend a consultation with a Movement Disorder Neurologist in order to diagnose, and hopefully treat, possible Parkinson's Disease.
Tragically, most physicians, and the general public, incorrectly believe that Parkinson’s is best represented by the stereotype of an old person shuffling along with a shaking hand or arm, and thus many miss the disease’s other earliest, pre-motor manifestations in people as young as those in their thirties. Because physicians are rarely trained to recognize these other indicators, far too many in my Parkinson’s community report numerous lost years of Parkinson’s treatment-including the vital recommendation to begin a consistent exercise regimen to slow down disease progression. Often, I’m told, physicians tell these younger patients reporting an inexplicable growing sense of general anxiety, low-level depression, and fatigue, that their problem is psychological. This is simply unacceptable.
In my opinion, with any patient presenting reports of depression, all clinical physicians need to be trained to do a full physical examination of these patients, whether they be elderly, non-elderly, middle-aged, or in their child-bearing years. Reports of depression without obvious external sources should require the physician's requesting the patient for a close family’s member’s report of any other recently observed new symptoms. This could reveal a possibly early onset of what many refer to as “Young-Onset Parkinson’s.” As we’ve just learned from Robin Williams’ story, this could make a life or death difference
Like millions of others, I’ve found myself deeply sad and surprisingly preoccupied with Robin Williams’ suicide, scouring news articles and brooding over possible explanations for his “tipping point.” (As a licensed CSW and family therapist, retired due to my own Parkinson’s, this kind of speculation is unsurprising.) I loved Robin Williams! He was such a brilliant, funny, gifted comic and improvisator, and his performance at Brooklyn’s BAM 6 months after 9/11 gave me my first belly laughs since that day of horror. For that, I will be forever indebted to him. But, the news today, as I awoke from an afternoon nap, that Robin Williams was in the early stages of Parkinson’s Disease, blew me away.
On Robin Williams: Depression, Suicide and Our Shared Parkinson’s
Like millions of others, I’ve found myself deeply sad and surprisingly preoccupied with Robin Williams’ suicide, scouring news articles and brooding over possible explanations for his “tipping point.” (As a licensed CSW and family therapist, retired due to my own Parkinson’s, this kind of speculation is unsurprising.) I loved Robin Williams! He was such a brilliant, funny, gifted comic and improvisator, and his performance at Brooklyn’s BAM 6 months after 9/11 gave me my first belly laughs since that day of horror. For that, I will be forever indebted to him. But, the news today, as I awoke from an afternoon nap, that Robin Williams was in the early stages of Parkinson’s Disease, blew me away.
It was a devastating revelation, because my personal guess is that Williams wasn't told that depression is one of the lesser-known, but common, and easily treated Parkinson's symptoms, as I learned early into my own PD experience. (I was diagnosed 15 years ago). His suicide is such a terrible, terrible tragedy, and a wake-up call to physicians and institutions of higher education to educate themselves, their trainees, and the general public about the many non-motor, debilitating symptoms which can signal the arrival of young-onset-Parkinson's, especially in adults over 30. Not doing so is patently and ethically irresponsible and potential dangerous medical practice, as unrecognized organic, treatable depression with identifiable organic origins can lead to suicide.
These earliest symptoms of Parkinson’s -not infrequently-can include insomnia, depression, apathy, anxiety, the loss of a sense of smell, a softening of the voice, a stiffening of facial muscles (often called “a facial mask”), fatigue, and the gradual appearance of slow cognitive changes which can resemble Attention Deficit Disorder. These new symptoms can feel quite unsettling to those used to
highly effective functioning in their work and home lives, because multi-tasking skills can often begin to go downhill as Parkinson’s takes root in the nervous system. Many people who are quite successful in their careers, (like Robin Willams, I suspect,) can feel mystified by a growing depression or new anxieties that may seem oddly disconnected from an otherwise relatively happy life. In addition, those who have been previously highly competent and organized can begin to find the completion of tasks somewhat difficult, and experience a new and puzzling sense of disorganization. Their intelligence and creativity is still available to them, but they inaccurately interpret these new behaviors as the onset of early Alzheimer’s, and, frightened, keep silent about these changes. Silence and hidden distress about one’s possible mental deterioration can lead to thoughts or acts of suicide.
Four years into my own PD diagnosis, I was lucky enough to attend a presentation at Beth Israel Hospital in NYC, about cognitive changes being part of a common Parkinson’s package. These
changes can include depression (which can appear as crankiness), and a loss of motivation and apathy. The presenters emphasized that not treating these syndromes can interfere with our ability to keep ourselves otherwise healthy, and with our relationships with those who we live with, along with our other support systems. I recognized some of this to be true in my case, and began treatment with an anti-depressant. Two months later, I was back to my old busy self; parent of a special-needs, pre-teenager; a part-time, private-practice family therapist; a resident-poet in the public schools; a writer; and a political activist. My new treatment also gave me the energy and hopefulness to attend the new, free Parkinson’s dance classes offered by Brooklyn Parkinsons Group at the Mark Morris Dance building. My Parkinson’s still slowed me down, but, depression now lifted, I felt able to take on the world again, and do what I needed to do to live as fully as I could.
The simple truth is this: young, working, vital folks in their 30’s, 40’s, 50’s and 60’s can develop Parkinson’s; it is not only a disease of the elderly! Furthermore, a shaky hand (tremor), is not present in everyone's PD, but many lesser known motor and cognitive symptoms can be evident, including all of those mentioned above. Thus, for a patient to report the perplexing appearance of any of these aforementioned cognitive and emotional distresses, coupled with a slowed gait, or the softening of her/his voice, or a friend's observation of a limp, or one arm not swinging when one walks, or one hand not typing accurately, anymore, or one arm no longer accurately throwing a ball, can serve as an alarm to recommend a consultation with a Movement Disorder Neurologist in order to diagnose, and hopefully treat, possible Parkinson's Disease.
Tragically, most physicians, and the general public, incorrectly believe that Parkinson’s is best represented by the stereotype of an old person shuffling along with a shaking hand or arm, and thus many miss the disease’s other earliest, pre-motor manifestations in people as young as those in their thirties. Because physicians are rarely trained to recognize these other indicators, far too many in my Parkinson’s community report numerous lost years of Parkinson’s treatment-including the vital recommendation to begin a consistent exercise regimen to slow down disease progression. Often, I’m told, physicians tell these younger patients reporting an inexplicable growing sense of general anxiety, low-level depression, and fatigue, that their problem is psychological. This is simply unacceptable.
In my opinion, with any patient presenting reports of depression, all clinical physicians need to be trained to do a full physical examination of these patients, whether they be elderly, non-elderly, middle-aged, or in their child-bearing years. Reports of depression without obvious external sources should require the physician's requesting the patient for a close family’s member’s report of any other recently observed new symptoms. This could reveal a possibly early onset of what many refer to as “Young-Onset Parkinson’s.” As we’ve just learned from Robin Williams’ story, this could make a life or death difference
Lesser Known Symptoms, and Lexicon, of Persons with Parkinson's Disease
Leonore Gordon,
LCSW
130 8th Avenue #3A
Brooklyn, NY 11215
(718) 783 1986
(347) 489 9123
(347) 489 9123
Lesser-Known
Symptoms, and Lexicon, of Persons with Parkinson's
Most members of the general public,
along with most health-care providers who do not specialize in movement
disorders, are aware of the hand tremors and the slow, shuffling gait typical
of the more advanced stages of PD, usually the most familiar characterizations
of PWP’s (Persons with Parkinson’s.) Many, however, seem to be far less
familiar with the wide array of other symptoms and issues common to patients
with “Early-Onset Parkinson’s.” These symptoms need to be recognized in order
to more effectively treat those of us with PD. Additionally, there is a
short-handed lexicon often used within the PD population; one which can require
translation in order to avoid confusion. The phrase, "I'm going
'off'" (ie. "My medication is wearing off and I'm about to be barely
able to move") can be easily misconstrued by a health care provider to
mean, (as one PT student told me), that the speaker may be "about to act
crazy." Likewise, "I'm
frozen" (ie. "I can't move at
all) can be equally misinterpreted to mean, "Close the windows" or
"Turn off the A/C." The following list roughly outlines some, (but
not all) of these above-mentioned symptoms, issues, and commonly used terms.
All of the symptoms listed below can appear intermittently throughout each day,
vary widely with each person, and can be both preceded and followed by hours of
the PWP appearing to be symptom-free.
* ”On’s” and “Off’s”
ie. “Going Off” or
“Freezing:”
These are phrases used by most later-stage PWP’s to describe the phenomenon
whereby we are suddenly switched “off” and lose the ability to walk, to step
forward, to grasp a pencil, to speak clearly, to reach for a book, etc. I
describe it in my poems as being “tagged” by a “Freeze-Tag Wizard.” This
presents differently for each person, but is most likely related to a drop in
the amount of levadopa in our blood levels. It is the most anguishing of
experiences for most PWP’s, because when it occurs, we are rendered completely
helpless, often after feeling fully functional. Although we know we will
eventually return to fully functioning again, we simply never know when the
next “tagging” will occur. “Rescue” interventions like Parcopa, (dissolvable
Sinemet), or injections of Apomorphine can turn some of us “on” again. Always
discuss these solutions with your neurologist.
Sometimes, but
not always, taking a large step forward can “unfreeze” us for the moment, as
can singing, or stepping over an imaginary line, or an ankle-high laser line of
light provided by certain canes designed for PWP’s.
* “Parkinson’s Mask”: A commonly used metaphorical
reference to the facial appearance of a later-stage PWP whose facial muscles
have stiffened into what can be mistaken for a depressed or indifferent,
impassive expression. This condition is always indeed “a mask,” because we
PWP’s have the same emotions as anyone else. Exercises of the facial muscles
can help this condition.
* Drowsiness or Insomnia, and
Physical and Mental Fatigue: All of these can be caused by PD and by side effects
from its medications, and can cause serious falls, or driving accidents.
Tackling these problems can occur through use of prescription medications.
Provigil is commonly used to keep us awake by day. For help with sleeping,
Remeron works for others. Note: A movement disorder physician is best
equipped to address and prescribe sleep medications. Sleep habits can also
be improved through exercise, yoga, meditation, cognitive therapy, awareness of
reduced caffeine in the afternoons and evenings, and avoiding nighttime
computer addiction.
*
Unpredictable balance inconsistencies: These can result in frequent falls
and potential hospitalizations. PWP’s can be moving easily across a room, and
moments later, be tipping or lurching forward, grabbing at walls, and
misperceived (which often happens) as being inebriated. This can occur when
medications are wearing off, or, conversely, just as they are kicking in. The
practice of Asian martial arts such as “Tai Chi”, “Qi Gong”, as well as dance
therapy, can be quite effective in addressing these PD issues. Falling can also
be caused by sudden drops in blood pressure; a symptom common to PWP’s.
·*Bradykinesia: a stubborn slowness of our limbs,
which attacks without warning, often minutes after we appear to be symptom-free,
but usually means we’re low on our levodopa med’s. It can manifest on one side
of the body initially, with one set of fingers slowed down and thus beginning
to make mistakes in typing, or the affected side not being able to sustain a
drumbeat, or, as is most common, one arm stops swinging as one walks across a
room.
*
Medication or Dosage Failures": Stress, fatigue, or extreme heat or cold, or Infections of any kind can disable a
PWP’s levadopa absorption. Something as benign as a sinus infection, a GI
infection (especially H-Pylori), or a urinary tract infection, can turn a
fairly high-functioning PWP into a severely disabled one, who can feel barely
able to walk for hours each day. Diagnosis and treatment of infections is
essential for both PWP’s and their practitioners to stay on top of. For some
PWP's, their digestive systems don't consistently absorb levadopa, and Tasmar,
which works through helping levadopa to be absorbed through the brain, can help
enormously with this, but requires blood tests every two weeks for six months,
due to very small risk of liver failure.
* Speech irregularities: PD causes many of us to have speech
that is too soft, too rapid, or slurring, which we are not always aware of, and
which can be irritating to our loved ones. Speech training, or joining a chorus
or singing programs can be effective in strengthening our vocal cord muscles, and
in slowing our speech down, and increasing our volume. Dry mouth from
medication side-effects can also make speech difficult, and a daily use of a
toothpaste, "Biotene," can be quite effectve in reducing this
problem.
* Dyskinesias: Involuntary jerking, twisting, or
writhing movements in many of us, which can be extremely disabling and
uncomfortable, causing secondary problems, like pulled muscles. Clinical trials
are underway to seek treatments for levodopa-caused dyskinesias. Namenda, a
newer pharmaceutical quite effectively used for Alzheimers, seems to have a
value for some of us in mitigating our exasperating dyskinesias, as is
Amantadine. Extensive acupuncture treatments to the ears was discovered
recently to be helpful, by a doctor in Germany. It can be adapted and modified
by other acupuncturists in the US, and this writer sees an acupuncturist in
Brooklyn who has done just that, greatly helping me with my own dyskinesias.
*Cognitive Disruptions and Executive
Dysfunctions) which
are caused by PD can
precede the onset of motor symptoms by as much as ten years. Sometimes unfortunately
mistaken for Alzheimers, these symptoms can often include depression, anxiety,
and difficulty with the brain’s “Executive
Functions.” These executive function problems can mimic ADD (Attention Deficit
Disorder) symptoms, causing great difficulty with short term memory
retrieval, multi-tasking, transitioning from one activity to another, problems
with concentration and attention, organizational skills, prioritizing, and
decision-making. PWP’s can also develop symptoms that look like OCD
(Obsessive-Compulsive Disorder), and some dopamine agonists have been
implicated in causing addictive and compulsive behavior like gambling and
sexual addiction. For many, the obsessive behaviors can manifest as computer
addiction. Compensatory strategies used by adult with ADD can be used to
address these problems.
All of these
can be a source of great frustration for many PWP’s who previously did not have
problems in these areas before symptom onset. Many have had to retire from
careers requiring these skills, or have had to significantly adjust and modify
their careers
These symptoms do not limit the intelligence or
creative abilities of those with PD.
*Anxiety and Depression can be effectively treated by
antidepressants, and anti-anxiety medications. Your movement-disorder
neurologist should discuss use of these medications with you and any other
physician prescribing these kinds of med’s.
These symptoms
can also often be lessened through use of the expressive arts, including such
mediums as dance, playing a musical instrument, writing poetry or prose,
painting, singing, sculpture or photography. Recent brain research using fMRI
brain scans suggest that improvisational creative activity stimulates parts of
the brain involved with creativity, and some of us speculate that this might
generate temporary rushes of a neurotransmitter that might, in effect, serve
the purpose of self-medicating artists with PD.
There is an
unexplained phenomenon of extraordinary bursts of creativity from those with
Parkinson’s, resulting, at the 2006 World Parkinson’s Congress, in a discussion
by Oliver Sacks on the topic, and a huge
gallery of work by PWP’s, which can be accessed at the PDF.org website under
the sidebar, “Living with Parkinson’s.”
For further
information, please contact Leonore Gordon, LCSW, at leonore1234@aol.com,
or by phone at (718) 783 1986, or (347) 489 9123.
My blog is at http://www.alphapdny.blogspot.com
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