Team Players

soccer team croppedGirls and young women pounding down the soccer field, deftly stopping the ball and then dribbling the ball towards the goal.  This is not an unusual sight – go to any city park or playfield during the school year and chances are likely you will find a soccer game in progress.  What is surprising is when you look more closely and realize the players’s braids and pony tails are flecked with….silver.

I just spent a remarkable weekend watching an adult women’s soccer team play several games in a national adult soccer tournament.  They were in the Over 60 age bracket, and are gleefully awaiting just a few more team members to age up so they can be on the young edge of the Over 65 age bracket.    (And yes, there is such a thing as Over 70 teams.)   I asked the goalie how old she was, and she proudly said, “66” only to have her teammate one up her by saying, “Well, I’m 68!”

Many have played together since the team was organized in 2005, but typically their zest for team athletics goes back much further.  I found this astounding given that these women all came of age before Title IX.  Title IX, passed in 1972 during the Nixon Administration, helped prevent gender discrimination in US educational athletic programs.  Back in the day, at my 2000-student high school, girls had only one team – tennis.

Although nearly everyone on the team sported knee braces, and although they all seemed suspiciously familiar with hip and knee surgery,  I found it inspiring to watch these women on the field.  This is the fourth time this East Coast team has played at this West Coast venue, and the fourth time they have made it all the way to the finals.  The slogan of these kick-butt ladies?  “CRUSH IT!”

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Roll Over, Beethoven

beethovenchuck berry

“That’s a classic,” my neurologist said.  He was not referring to any compositions by Beethoven or the Chuck Berry classic, “Roll Over, Beethoven”.    Alas, my doctor was commenting on my latest weird Parkinson’s symptom, difficulty rolling over in bed.  Turns out, that’s a pretty common symptom – I wondered why.

Quick as a wink, my research assistant, Dr. Google, produced the answer: “disordered axial movement”.  Hmm…sounds like a flat tire to me.  The 1996 study Dr. Google found summarized that failure to turn in bed had “significant associations” with
disturbances of gait, postural stability, rising from a chair, whole body bradykinesia, and axial rigidity.  Not surprisingly, these symptoms were worse when the person was in an “off” state.  (Levadopa, which is a dopamine  precursor, cycles up and down.)

The article stated that the neural pathways controlling limb movements are different than the pathways controlling axial movements (your trunk).   This is significant because bradykinesia (slow movement) and levadopa’s impact on it may affect these movement systems differently.   What helps with the tremor in your hand may not be as effective on turning over in bed.   And (aha!) axial muscles also are what control  your posture.  The “aha!” is because I have struggled with stooped posture for over a year now.  Axial muscles also help with locomotion, helping explain why we Parkies tend to scuffle and have other gait  problems.

And before I get a ton of emails on “building up your core”, I have done some sort of situps nearly every day for….oh, easily 30 years.   I am, needless to say, tired of receiving this well-meaning but apparently useless advice.  My posture still resembles the Bride of Frankenstein.

So how do you turn over in bed?  A fascinating part of this article was assessing  what was “normal” turning:  “initiated by the head and shoulder, not the pelvis and leg. Pushing with the free hand against the floor behind, or not using the free arm at all were assessed as abnormal” as was “pronounced flexion of the knee early in turning”.

YouTube extra!  Of course I have to have a clip  of “Roll Over Beethoven”.  Chuck Berry’s original is soooo much better than a laughable cover by (yes, really) the Beatles (look for the twisters in the background).

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Pinky’s Passion – Rock on August 5!

Pinkys Passion-Pat EricksonWho is this woman and what is Pinky’s Passion?  We’ll get to that in a minute, but first, mark your calendar:

3rd Annual “Rock in the Park”
Sunday, August 5,  Noon to 4 pm
Cromwell Park, 18030 Meridian Ave. N., Shoreline, WA
Three Fabulous Bands!
–Annie Eastwood with Kimball and The Fugitives
–Stacy Jones Band
–Third Train Running
Donations accepted for “Pinky’s Passion for a Parkinson Cure”
Click for more info

The woman in the lovely hat is Pat “Pinky” Erickson,  and Pinky’s passion is raising money for Parkinson’s.  After she was diagnosed with Parkinson’s at 45, she set up a fund-raising organization in 2009 which has contributed over $250,000 to Parkinson’s organizations.  WOW!  This is news to rock out about!

I heard about this event when I went to a dance where Annie Eastwood  (aka “Stickshift Annie”) and the boys were playing.   I can vouch that this band is fabulous, especially a really wicked sounding sax player.  Check out the second to last clip on this link.

Alas, I’ll be camping in Canada on August 5., but I’m going to donate anyway.   Check out the event for me, and say hello to Pinky – she sounds like great balls o’ fire!





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The Alphabet Soup of PROs

AlphabetSoup-768x512In a previous blogpost, I wrote about how Patient Reported Outcomes (PROs) is not only a hot topic in the medical world, but also pivotal to Parkinson’s research.  There is quite an alphabet soup list of surveys and diagnostic scales being used by Parkinson’s researchers across many institutions, such as: PASE, EQ-5D, MDS-UPDRS, NMSQuest, PDAQ-15, PDQ-8,  PD PROP,  PRO-PD, GDS,  and (my  personal favorite) The Edinburgh Handedness Inventory, among others.   Many of these tools are also used in Fox Insight (a project of Michael J. Fox Foundation (MJFF)).  After an eye-blearing day consulting with my research assistants, Dr. Google and Dr. Wikipedia, I was finally able to translate this list.

First, a couple diagnostic scales used by clinicians that are NOT surveys:

Hoehn and Yahr
This is an old (1967) 5-point scale that has been superseded, but still pops up occasionally in research literature.  It’s entirely focused on motor symptoms:  From 1: “Unilateral involvement only usually with minimal or no functional disability” to 5: “Confinement to bed or wheelchair unless aided”

MDS-UPDRS  Movement Disorder Society – Unified Parkinson’s Disease Rating Scale
This is the current clinical “gold standard” and very likely what your neurologist is using to record your symptoms.  It was originally developed in 2003 and modified in 2007 to address two major limitations: the lack of consistent anchor among subscales and the low emphasis on the nonmotor features of PD.  The scales are now titled; (1) nonmotor experiences of daily living (13 items), (2) motor experiences of daily living (13 items), (3) motor examination (18 items), and (4) motor complications (six items). Each subscale now has 0-4 ratings, where 0 = normal, 1 = slight, 2 = mild, 3 = moderate, and 4 = severe.

Here are some surveys that are specific to Parkinson’s and have the potential to be the “universal survey”.

PDQ-8 (long form is PDQ-39) Parkinson’s Disease Questionnaire
This is the survey used by Fox Insight for the Daily Living section of the survey.  Yes, there really are only 8 questions on the PDQ-8.  The longer PDQ-39 is primarily used in clinical trials .  These surveys are used as a tool for the assessment of quality of life in Parkinson’s disease patients.   Format is “in the last month due to PD, how often have you had [PD symptom]”   Answer (Choose One): Never, Occasionally, Sometimes, Often, Always.  (I continue to be mystified what is the difference between “Occasionally” and “Sometimes”.)

PRO-PD-  Patient Reported Outcomes in Parkinson Disease
The Patient Reported Outcomes in Parkinson’s Disease (PRO-PD) is the cumulative score of 32 slider bars, each evaluating a common Parkinson’s disease symptom, both motor and non-motor.  The slider scale is a continuum from 1 to 100.  I’ll give a shoutout on this survey, because it was locally developed (around 2014) here in the Seattle area; one of the creators is the tremendously energetic and creative Laurie K. Mischley from Bastyr University, a local naturopathic institute.

PD PROP-  Parkinson Disease Patient Reported Outcomes of Problems
PD-PROP was devised by Dr. Ira Shoulson to capture accounts of PD patients’ bothersome problems, and asks questions like:
–“What bothers you the most about your PD?”
–“In what way does this problem bother you by affecting your daily functioning?”
–Problem severity (0-1-2-3 categorical scale)

PDAQ-15- Parkinson’s Daily Activities Questionnaire-15
Another short questionnaire (the shorter, the more likely the respondent will fill out the whole thing).  Penn Parkinson’s Daily Activities Questionnaire-15 (PDAQ-15) is a 15-item measure of cognitive instrumental activities of daily living derived from the original 50-item PDAQ.    I never could find an example of how the questions were structured.  Developed around 2014.

NMSQuest -Non-Motor Symptoms Questionnaire
This is the survey instrument Fox Insight uses to report non-motor symptoms.  The format is “Have you experienced any of the following in the last month?”; yes/no for a list of 30 delightful non-motor symptoms, ranging from drooling to constipation.

And then there are surveys that measure attributes not specific to Parkinson’s:

PASE – Physical Activity Scale for the Elderly (PASE)
The questionnaire comprises section on leisure time activity, household activity and work-related activity.   A mere 10 questions, it contains a personal favorite that I find difficult to believe people answer honestly.   This question also presents challenges for those of us exercising in the, um, rain-dappled Pacific Northwest.

During the past 7 days, how often have you seen the sun?
[0.] NEVER
[1.] SELDOM (1-2 DAYS)
[3.] OFTEN (5-7 DAYS)

GDS–  Geriatric Depression Scale (Short Form)
Created in 1986.  15 questions, yes/no, how you felt over the past week

EQ-5D – EuroQuol Five Dimensions
This is another short survey, with five questions relating to your quality of life.   You have three possible answers for how you are feeling TODAY.   For instance:

— I have no problems in walking about
–I have some problems in walking about
–I am confined to bed

Other dimensions are Self Care [i.e., washing, dressing], Usual Activities (e.g. work, study, housework, family or leisure activities), Pain/Discomfort,  and Anxiety/Depression.

The Edinburgh Handedness Inventory
And saving the best for last: Yes, this really is a survey for determining objectively whether one is left or right handed.  It gives researchers context to understand responses to other surveys.



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“Lord of All I Survey”

Back in April, I wrote a post pleading for a universal Parkinson’s survey to help both research and clinical care.  Wouldn’t it be great if researchers didn’t have to reinvent the wheel  and create a new survey on demographics and symptoms with each project?  Wouldn’t it be great for a clinician to get a report of symptoms from patients presented in a consistent way?

It turns out there already are universal Parkinson’s surveys (several – see my next blog).   It also turns out the “Patient Reported Outcomes” (PRO) is a hot topic in the medical world.  Even with chronic conditions that can be measured objectively  (by, say, lab tests or x-rays), the most meaningful measure of a therapy’s efficacy is frequently the improvement in the patient’s quality of life — as reported by the patient.    How do you make this reporting consistent and measurable?


The National Institutes of Health has managed and funded a program for several years called PROMIS® (Patient Reported Outcome Measurement Information System).  PROMIS® has developed and validated  building blocks of survey questions for many physical, mental, and social health areas as varied as alcohol use, mobility, or gastrointestinal problems.  Of particular interest to Parkies is Neuro-QoL (Quality of Life in Neurological Disorders),   This is a set of measures (questions) covering all the usual topics (depression, cognitive function, etc.) as well as some unusual (incontinence.)

Since I fill out a survey every three months for Fox Insight (a project of the Michael J. Fox Foundation  (MJFF)), I reached out  to the research team to ask  about survey design.  They responded that Fox Insight didn’t design new surveys for the study but used surveys that had already been created and validated by other groups like the International Movement Disorder Society or various universities.

What particularly struck me about this response was the reference to validation.  Until I started conferring about surveys with my research assistants, Dr. Google and Dr. Wikipedia, I hadn’t realized how much work goes into not only coming up with the questions, but validating and testing them to make sure they generate valid, accurate data.  In a disease like Parkinson’s that has no known biomarkers (that is, objective measurements), validating data from PRO instruments is particularly crucial.

There are many survey instruments and scales used in Fox Insight.  It’s quite an alphabet soup:  PASE, EQ-5D, MDS-UPDRS, NMSQuest, PDAQ-15, PDQ-8, , PD PROP,  GDS, and (my  personal favorite) The Edinburgh Handedness Inventory.  Explanations of these instruments are in my next blogpost.

michael-j-fox-cropPssst…..Do you want to be a cool kid and use phrases like “efficacy of survey instruments”??  Do you want to be one of those Patients Reporting Outcomes?   It’s easy!  Just sign up for the Fox  Trial Finder.  You’ll be matched up to clinical trials and other research, so you can easily assess if you want to volunteer for a particular project.  And while you’re in the neighborhood, sign up for the Fox Insight study.  In this quarterly survey, you provide valuable information (from the comfort of your computer) about your Parkinson’s symptoms.  Don’t have Parkinson’s?  Sign up anyway — most trials require controls (folks without Parkinson’s).


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Register to Vote by July 9


Don’t Disappoint Her!        Susan B. Anthony

I put together a Frequently Asked Questions about voter registration:
–If you live in Washington State, and need to register, change address, or change name , please look at the info below.
–If you know someone who needs to register, please share this info.
— If you don’t live in Washington State, Google your election office in your county or state for info.

Please register online by July 9 to vote in the August primary in Washington.

And don’t forget to VOTE!  The turnout in WA’s 2017 Nov election was 37%.

When do I need to register so I can vote in the August primary or the Nov election?

Register online or by mail:  July 9 for Aug 7 primary.  Register in person by July 30.
Register online or by mail:  Oct 8 for Nov  6 election.  Register in person by Oct 29.

Can I register online?  Where?

Yes!  Just go to the Secretary of State website:
or Google “register to vote Washington”

What do I need to register online?

A current WA driver’s license or WA state ID.  If you don’t have one of these, you can still register by mail or in person.

I’m registered, but need to change my address.  How do I do this?

Go to King County website (see links below) and scroll down to “change my address” icon.

I’m registered, but need to change my name.  How do I do this?

Fill out a new voter registration form. You should also do this if your signature has changed over the years.

I’m registered in another state – How do I change to Washington?

Fill out a new voter registration form for WA.
Google your previous state’s election office to find out how to cancel your old registration.

I’m not quite 18 yet – can I register?

You can register if you will be 18 by election day.

Can I register to vote by mail?

Yes.  You can either download the form (see links below) or find it at most libraries and city halls.

Can I register to vote in person?

Yes.  The nearest location is King County Election Office in Renton, 919 SW Grady Way (near vehicle inspection station).  Hours: M-F, 8:30 -4:30

Can felons vote?

It’s complicated.  Best to check the Secretary of State website (see links below).

Can I sign an initiative/referendum if I’m not a registered Washington voter?

No, your signature will not count if you are not a registered Washington voter.

If I register, then I might be called for jury duty – True?

You might be called for jury duty whether or not you register to vote.  The courts use several sources for jury pools, including driver’s license  and state ID databases as well as voter rolls.

I don’t have time to vote!

Ballots are sent out by mail about three weeks before Election Day.  You can mail back your ballot at any time during that period.  King County provides free ballot drop boxes, including one by the Burien Library.

How do I find out about the candidates and issues on the ballot?

A voter’s guide is sent out at the same time as your ballot.  You may also want to Google candidates and issues, and/or attend candidate forums in your community.

How do I get voter’s pamphlet/ballot in a different language?

You specify your language preference when you register.

Where do I find out more about registering to vote?

King County:
WA Secretary of State:  or call: 1-800-448-4881

This FAQ is available as a WORD document.  Please contact me if you need it in that format.

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The Poet Laureate of Parking Suns


One of my fellow Parkie bloggers is Bruce Ballard, whom I had the pleasure of meeting in person last year in his hometown of New York.  We also met at the 2016 World Parkinson’s Congress, where we were both “official bloggers”.  Bruce is continuing in this role for the 2019 WPC in Kyoto, Japan.  As a nod to its host country, WPC held a haiku contest in April and Bruce submitted thirteen poems – then he got really inspired and composed 150 of them!  So far, he has published 100 of them on his blog.  I’ve just picked a few (well, more than a few) but I recommend reading all of them.  Anyone who has PD or lives with someone who does will find yourself nodding your head.  Plus you get the opportunity to read his fun blog called Parking Suns (get it?)

Click here for all 100 (!) haiku

Thanksgiving pies bake.
People sniff the air and smile.
I can’t smell a thing.

3 a.m.: Can’t sleep.
3 p.m.: I’m so drowsy
I could nap standing.

My clock’s pendulum
Swings back and forth each second.
Not my arm in years.

I added a chair
To my bedroom, so I can
Sit when I get dressed.

Band plays music. Foot
Taps along. Band stops playing.
Foot keeps on tapping.

Button a shirt? Stand
On a rocking chair, squeeze a
Lemon seed through gauze.

Relief! My doctor
Examines me, mutters to
Herself, “Wow – no change.”

The Leaning Tower
Of Pisa must have PD,
With that stooped posture.

Do these haiku slow
My cognitive impairment?
Let’s all write some more….

Can you squeeze “carbi-
Dopa/levodopa” in
A haiku? I can!

I hope that some day
A cure for PD will come.
And in my lifetime.

I down my pills and,
Walking up the steep mountain,
I don’t limp at all.

Does the Moon not feel
Dizzy as it twirls ‘round Earth?
I do, just standing.

Two things are constant –
My body: loose at the seams;
Wednesday: trash pick-up.

July 4th cook-out!
I can’t smell the barbecue.
I can’t cut my steak.

Having PD means
One-person games of freeze tag,
And I’m always “it.”

After two hours at
The gym, I leave, breathe deeply,
And exhale the moon.

Let me take a nap.
Please, just let me lie down. Please.
Thank you. Oh, thank you.

The willow tree sways
In the wind. Was I ever
Flexible as that?

I’m still doing well.
I’m still walking miles and miles.
Later for you, bone house.


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Seven Elements…Oh Bother

In my Facebook peregrinations, I stumbled upon “Seven Elements of a Highly Effective Parkinson’s Exercise Program“, presented by a (inevitably) perky physical therapist named Dr. Sarah King.  She runs a physical therapy business (Invigorate Physical Therapy and Wellness) in Austin, Texas, which specializes in helping Parkies.

OK, you’re dying to know what are those seven elements — here they are:

  7. FUN

Sneaking in exercise. Hiking through a slot canyon on a recent trip to the Southwest.

I manage to flunk out on pretty much all of these.  The last one always gets me — exercise is fun???!!   For me, this is sort of like saying brushing your teeth is fun…or a mammogram is fun.   I know I need to do exercise so I do it – most every day.  There are a few things I do that sneak in exercise while I’m not looking — dance, skiing, hiking — but for the most part, exercise is a job.

Elements 1-4 all relate to the types of exercises you do.  Despite my expensive year with a top notch personal trainer, I’m not sure if my exercises are BIG. (This is to overcome slow, small movements that are a hallmark of Parkinson’s.)  Physically challenging?  This is so perverse — when I am (attempting to) run, I feel like I’m going as hard as I can, but when I’m through, I’m not even sweating. Dr. Sarah has the cheery saying, “If it’s not challenging you, it’s not changing you.”

Mentally challenging (for instance, counting your reps backward) ?  Yes, this is important as it is definitely harder for me to multi-task.  (See my post about skiing.)   Other than dance, no,  I’m not doing any mental drills — I feel like my neurons are full just doing the  physical stuff.

Are my exercises specific to my Parkinson’s symptoms?  Kind of.  I do a lot of shoulder /neck exercises and endless sit ups to combat my stooped posture and my sore lower back.  I also do the occasional balance exercise to work on balance.

I guess I could beef up my existing exercise program to better incorporate these elements, although I get so fed up with constantly tweaking exercises.  (Ironically, one of the things my trainer advised was to be more consistent.)

The social element?  I am so grateful for the walking group I’m in, but truth be told, we do more talking than walking.  Everyone has an interesting tale to tell, but there’s not much huffy-puffy.   I would like to find a midweek hiking group, but haven’t gotten around to it.  Yes, I’ve taken various classes at the gym, but I’ve developed a real horror of them — everyone seems to have gotten the secret memo about the Zumba routine except me.  Dr. King makes the good suggestion of a Parkinson’s workout buddy.  There’s a couple people I can think of who would fill this role nicely, but I haven’t asked them, and I’m pretty sure they would say no, since they don’t exercise now and try to ignore Parkinson’s.

I’ve saved accountability for last, because it’s the one I dread the most.  Dr. King defined this element as having someone else has to hold you accountable,  because inevitably your own motivation will slip.  I interpret this element differently — accountable for what?  You have to set some sort of goals.   Dr. King talks about not seeing the results you want from an exercise program.   Well, what results?  I struggle mightily to come up with goals — I think I really don’t want to set goals, because then I will have something tangible to fail at.   I don’t seem to be making much progress at one of the few easily measurable goals I have – to run a 5k.   About a  year ago, I could run about a mile….today?  I still can run only about a mile.

Sigh…When I listened to Sarah King’s video,  one of her patients suggested an eighth element:  leave your ego at the door.  Get out of your comfort range.  Yep, guess I need to do this.



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Keep Moving and Keep Smiling

img_20180424_2005392-e1525058036696.jpgKeep moving and keep smiling
I am indebted to one of my dance partners Paul Griffin for this mantra.  Paul is the tall fellow in the photo, taken on the last night of my latest set of dance lessons.  I have now been taking ballroom dance lessons  off and on since I attended the World Parkinson’s Conference in Montreal in 2013.   They had a tango demo at the conference and said tango was good for Parkis — that whole brain-body coordination thing.

Keep moving and keep smiling
So does this mean I’m a sultry tango dancer?  Nope– I lasted in tango for literally 20 minutes.  After the instructor said the first and most important thing was posture, I knew tango would be hopeless.  When I signed up for Tango Bootcamp (yes, that’s really what it was called), my posture wasn’t as stooped over as it is now, but it wasn’t great.  My husband also wisely suggested I stick with one kind of ballroom dancing , so I chose swing dance.

Keep moving and keep smiling
How’s the dance thing going now?  OK, I guess.   I still feel like a beginner, but was stunned when I  watched some professional swing dancers and realized I had done every step in their routine – just not quite as smoothly of course.  I consider it a huge step forward that I no longer routinely get asked at dances:  “Laura, have you thought about taking lessons?”

Keep moving and keep smiling
Does the dance help with the Parkinson’s?  Gosh, I hope so.  I can feel my brain clicking away as I keep repeating (sometimes out loud!) “Step, step, back step”.  I can feel those neurological muscles working as I try to catch the rhythm and follow the lead without knowing what steps (or even what  dance) my partner will be doing.

Keep moving and keep smiling
Even without doing tango, I still have to work on posture.  Something that is critically important in dance is the “frame” — holding your body upright and firm so your lead can non-verbally communicate with you rather than attempting to push a limp noodle around the dance floor.   I was crushed to see in the photo that I am still stooped over.   Even my gentle dance instructor admonished me not to dance with my butt stuck out.

Keep moving and keep smiling
April is Parkinson’s Awareness Month.  I for one do not need a whole month to remind myself of Parkinson’s – I am acutely aware of  it.  I have to admit that I continue to nurse the indulgence that not only is everyone else  aware of my Parkinson’s  but they should consider me “special” because of it.  Hey! You!  I have a progressive disease!  Of course I can’t dance!  Of course I can’t stand up straight!  Of course I lose track of the rhythm!  Haven’t you ever heard of bradykinesia?

Keep moving and keep smiling
It’s a ridiculous and arrogant indulgence.  I was reminded of this when one of my dance partners insisted on a hand hold that was not the dance standard.  I kept correcting the handhold and he kept reverting to this odd grip.  He finally said if he didn’t hold his hand in that manner, the tremors would start up and his hand would freeze in a claw.   Oh……perhaps I’m not the only one who’s so “special”.  I must remember, in both dance and life:

Keep moving and keep smiling
Thanks, Paul, for this mantra.  May I have this dance?

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A Survey of Surveys

brain with question markCouldn’t we have just one Parkinson’s survey?  And use it for both research and patient care?

I participate in various longitudinal research studies (studies over time), which means that I fill out LOTS of surveys online.  I wonder why researchers appear to be intent on “reinventing the wheel” asking the same questions in slightly different ways and, more significantly, with different scales.  Couldn’t we have a universal questionnaire for the subjects that are asked universally?

Here are the subjects that tend to be asked universally on Parkinson’s research projects:
–Demographic profile (age, ethnicity)
–Diagnosis (when, what)
–Therapies (medications, operations-e.g., DBS)
–Motor symptoms (a depressingly long list – do you have these symptoms? how often? how severe?)
–Non-motor symptoms (another depressingly long list)
–Depression/ Anxiety (a lot of questions to tease out this non-motor symptom)
–Cognition (memory, ability to multi-task, learn new things, etc.)
–Activities of Daily Living (dressing, bathing, shopping, etc.) Continue reading

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