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PD Community Blogs

We’ve searched the “blogosphere” for creative, informative and educational blogs that might be of interest to you.

Kate Kelsall: Shake, Rattle and Roll
Kate was diagnosed with Parkinson’s disease in the mid-1990s. In addition to being an activist for Parkinson research, she is a co-facilitator of a DBS support group in Denver.

Here’s a few more blogs that are worth checking out.

Patient Blogs

Caregiver Blogs

National Parkinson Foundation: Caregivers on the Blog

Voices from Parkinson's community


Ask the Parkinson's Expert: Dietary Protein & Carbi-Dopa/Levo-Dopa

Date: Mar 07, 2017

The Parkinson Association of the Rockies has created a new segment on our bi-weekly enews called, "Ask the Parkinson's Expert". Every enews we ask the community to submit a question they may have for a Parkinson's doctor, a selected question will then be answered and featured on the next enews.


All questions are confidential. Not all questions can be answered, so please notify your physician for immediate attention.


Q: What factors influence the interference of dietary protein with carbi-DOPA/levo-DOPA? Fiber or fat content of the meal? Rate of ingestion? Other?


A: This is an important question because most people aren't counseled about the effect that dietary protein can have on the absorption of levodopa from the gut. People can be effectively wasting a dose of levodopa if they take it at the same time as a high-protein meal - as most of the medicine will just end up going straight through them! Levodopa is an amino acid, and amino acids are the "building blocks" of proteins. There are transport channels in the gut that let amino acids enter into the blood stream and later get to the brain. For levodopa to get to the brain, it needs to enter through these transport channels, but it can't do so if they're all taken up by the other amino acids from the bacon and eggs you had for breakfast!  High protein foods include not only meat (chicken, beef, pork, fish), but also dairy (milk, eggs, yogurt and cheese), beans and nuts.


Other dietary factors don’t affect this protein transport channel issue directly, but they can slow down or speed up the absorption of levodopa in other ways. If the pill is taken with or just after a meal, it will take longer to exit the stomach and get to the intestines.   It takes between 1 to 3 hours for food to exit the stomach. It wouldn't really matter how quickly the meal was ingested, as it all ends up in the stomach and is slowly metered out to the small intestines over that 1-3 hour period. A pill would exit the stomach faster if it was taken on its own, without food. High-fat meals slow down stomach emptying even more, so it would take even longer for the levodopa to exit the stomach. Alternatively, a high-fiber diet helps keep the GI tract moving and avoids constipation in general, so this could help make sure that the levodopa gets to the intestines to be absorbed in a timely fashion. But you still wouldn't want to take the levodopa at the same time as a meal, even if it was a high fiber meal, due to the stomach emptying issue.  


Ideally, levodopa should be taken 30-60 minutes before a meal, so it can exit the stomach quickly and be absorbed through the intestines without any competition. People with Parkinson’s should eat a high-fiber diet to keep the GI tract healthy and regular, ensuring a lot of fluid intake to keep that fiber moving through the gut!


            - Dr. Samantha Holden, University of Colorado Hospital

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e3- educate, empower, energize 2016

Date: Sep 15, 2016

Our 4th Annual e3 educate, empower, energize conference on Saturday, September 10 at the Hyatt Regency Aurora - Denver Conference Center was a home run! 

Tim Hague Sr., winner of The Amazing Race Canada captivated us with his story of his triumphant win! He made us laugh and he sure did make us cry! Tim was the perfect way to kick off a day of empowerement as he left us knowing that we can "live our best lives". 

Following Tim, we had a jam-packed day where we challenged participants to: 

-educate themselves about nonmotor symptroms and learn techniquest ot overcome those symptoms

-energize themselves and express themselves through the use of movement and creativity

-empower themselves through reminders of how important self-talk and self-care are to their well-being

We can't thank our committee, our day-of volunteers and our community for helping make this one of our most successful events to date! Thank you! 


Click on the presentation titles to download a copy of the presentations from the day. 

NonMotor Symptoms, Samantha Holden, MD, University of Colorado Hospital 

Treatment of NonMotor Symptoms, Mihaela Alexander, MD, Colorado Neurodiagnostics

Mindfulness, Benzi Kluger, MD, University of Colorado Hospital

Communication & Well-being, Cynthia McRae, PhD, University of Denver

Exercise for Parkinson's, Miriam Rafferty, PT, DPT, Phd, Northwestern University

From Disoder to Dancer (COMING SOON!), Sarah Leversee & Wayne Gilbert, Art as Action


Click HERE to view photos from the entire day!

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e3- educate, empower, energize 2015

Date: Sep 15, 2016

On October 9th, at the Denver Marriot Tech Center, over 400 individuals attended the Parkinson Association’s 3rd Annual e3 conference to be educated, empowered and energized through a number of topics that ranged from exercise to care partner collaboration. We were overwhelmed by the positive responses we received from attendees, “What an enjoyable day! We met so many lovely people and left with a lot of information!”

From the evaluations, we found that participants walked away with a deeper understanding of Parkinson’s disease and its many symptoms. They also came away with specific tools to live vibrant and healthy lives with Parkinson’s.

They were educated, “I learned that I need to stop saying, I can’t!”

They were empowered, “So empowering to have such outstanding speakers

and wonderful support for the Parkinson’s community!”

We are deeply grateful to our e3 presenters, who donated their time and knowledge to provide our community with helpful tips and tricks for thriving with Parkinson’s. The success of this conference is due in great part to the e3 Committee members; for the many hours they dedicated to creating a powerful conference. Thank you also to the day-of volunteers who ensured the conference ran smoothly.

Click HERE to watch videos from the entire day! 

Posted By: PARadmin


Colorado Community Conference on Parkinson's Disease 2016 Presentations

Date: May 16, 2016

The 3rd Annual Colorado Community Conference on Saturday, May 7 at the Westin Westminster Conference Center was a huge success! Over 300 people braved the cold and rain to come together to support local research on Parkinson's disease. The conference, brought to you by the Parkinson Association of the Rockies, focused on research, medications and tips & tricks through seminars and panel discussions. 

Conference also included a Clinical Research Resource Fair. This Fair provided an opportunity for conference participants to speak directly with clinicians and physicians who currently have open research trials as well as individuals who have participated in past and/or present clinical research trials.


Presentations will be uploaded as they come in from speakers. 

Josefa Domingos, MS, PT, Campus Neurologico Senior Lisbon, Dual-Task Interventions

Monique Giroux, MD, Movement & Neuroperformance Center, Practical Tips

Adam Hebb, MD, Colorado Brain & Spine Institute, Current & Future Treatments

Peter Schmidt, PhD, National Parkinson Foundation, Exploring Tomorrow's Breakthroughs 

The Michael J. Fox Foundation Research Roundtable



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Deep Brain Stimulation for Gait & Balance

Date: Apr 08, 2016

By Heather Baer, M.D., University of Colorado Denver
Deep brain stimulation surgery (DBS) is a powerful tool in the treatment of both Parkinson disease (PD) and essential tremor (ET). DBS has been shown to be very helpful for the management of tremor (in ET) and for tremor, rigidity and slowness of movement (in PD). However, it is more challenging to interpret the literature with regard to the effect of DBS on gait (overground walking) and balance (the ability to maintain control over one’s center of gravity) for persons living with ET or PD. A main reason for this is that DBS has differential effects upon various aspects of gait and balance control. Other factors influencing interpretation of studies include variations in study design, differences in degree of pre-surgical gait and balance impairments between study participants, effects of different aspects and degrees of cognitive impairment, effects of medications, choice of surgical targets, lead placement and programming techniques.
In order to understand the effects of DBS on gait and balance it is important to first appreciate the complexity of normal functioning, as well as the effects that ET and PD have on these activities. Walking is an activity that requires adequate strength, vision, proprioception (sensation of where the body is in space) and motor planning. Similarly, balance control depends upon the proper functioning of the inner ear (vestibular apparatus), vision, proprioception, cerebellar function, cognitive function and motor strength.
Proper functioning of multiple neurotransmitter systems (brain chemicals) is part of this equation.
Unfortunately, balance generally declines with aging, even in the absence of a neurodegenerative disorder. In addition, PD and ET are associated with deterioration of gait and balance over time. ET has been associated with changes in gait and balance which might only be recognized through specific testing in the clinic or in an instrumented gait laboratory.  ET related gait and balance problems include impaired tandem gait (as in the road side sobriety testing), wide based gait (legs spread apart to increase the base of support), reduced gait speed, an increased number of near falls (stumbles) and other subtle abnormalities. These gait and balance impairments are thought to be related to dysfunction in cerebellar pathways. Interestingly, the severity of the tremor does not clearly predict the severity of the balance problem.
PD is well known to adversely effect gait and balance, although these problems may vary across a given day depending upon medication state, fatigue and other factors. Gait deviations seen in PD include short steps, poor foot clearance, slowness, decreased arm swing, asymmetric steps, freezing of gait and start hesitations (trouble with initiation of gait).
PD-related balance impairment is often expressed by the term “postural instability”, which is a problem in maintaining control of one’s center of gravity in response to an external perturbation. In addition, it has become increasingly clear that cognitive or behavioral impairments (e,g, confusion and impulsivity) can adversely effects motor planning and gait safety.
Medications used in the treatment of ET and PD may have variable effects on gait and balance. This is due in part to medication side effects and to the effect of medications on various neurotransmitter systems that impact balance and gait control. Those given for tremor in ET can cause confusion, dizziness and sedation. PD medications have a more complex effect upon gait and balance. On the positive side, dopamine replacement therapy (e.g. levodopa and dopamine agonists) can lead to improvements in stooped posture, longer and more even steps, better arm swing, less freezing and a faster gait speed. Unfortunately, PD medications can also lead to dizziness, confusion, impulsivity and dyskinesias, all of which can undermine gait and balance.
In general, it is thought that the effect of dopamine replacement therapy on PD-related symptoms is predictive of the response of those symptoms to DBS. For the most part, this seems to be true, although there appear to be exceptions. For example, it is well established that individuals with PD or ET who have medication resistant tremors are still extremely likely to benefit from DBS. The correlation between responsiveness to medications and response of PD-related gait and balance problems to DBS is a little harder to describe. For example, freezing of gait that occurs predominantly in the OFF medication state, is likely to get better with DBS, but may continue to be a problem after DBS (although possibly to a lesser extent).
Thalamic (VIM) DBS for ET is associated with mixed effects upon gait and balance. Some researchers have found improvements in overground walking and tandem gait. However, there are more reports of deterioration in gait and balance, particularly when DBS leads are placed on both sides of the brain (bilateral DBS). Predictors for worsened gait and balance after VIM DBS include older age and the severity of pre-DBS balance problems.
Positive effects of subthalamic nucleus (STN) DBS on gait and balance have included increased gait speed, improved arm and leg swing, improved stride lengths, decreased stooped posture (which puts the center of gravity too far forward) and improved preparations for step initiation. Unfortunately, post-DBS worsening has been reported to occur soon enough after surgery to suggest that it is due to DBS and not just due to further disease progression. Post-surgical problems have included increased falls, increased freezing of gait and worsened gait mechanics. There are also studies that show a negative effect on preparation to take a step (gait initiation). Explanations for worsening after STN DBS have included the severity of pre-DBS balance impairments, problems with electrode placement, stimulation parameters, impulsivity, cognitive worsening and lowering of dopaminergic drugs. In addition, it is thought that non-dopaminergic systems (those not amenable to DBS at the current targets that are used) play an important role in control of gait and balance.
Mixed results have also been reported in studies of DBS targeting the globus pallidus internus (GPi). Positive effects have included increased gait velocity, improvements in preparatory postural adjustments for gait initiation and improved responses to small balance perturbations. Conversely, other authors have reported declines in aspects of gait initiation and no improvements in response to external perturbations. It should be noted, however, that there is much less information available about the effects of GPi stimulation on gait and balance.
When GPI and STN stimulation are directly compared for outcomes on gait and balance, GPi stimulation has seemed to be better in terms of balance confidence (which has been shown to reflect the risk of falling), rate of severe falls (which were fewer after GPi), automatic postural responses, step velocity and response to external perturbations. Other studies have found no difference between STN and GPi for balance and gait outcomes.
Movement disorders specialists are now well aware that the current applications of DBS for PD do not adequately address gait and balance problems. Current efforts to remedy this situation include trials aimed at combining the use of specific medications and DBS, studies of different brain targets for DBS (particularly the pedunculopontine nucleus), and the use of new imaging techniques to try to learn how to individualize DBS to be tailored to the particular brain anatomy of each individual person.
Gait and balance control is complex. Normal aging, ET and PD can all contribute to impairments in both gait and balance. Medications used in the treatment of ET and PD also can impact these activities. Understanding of the effect of DBS on gait and balance control in ET and PD requires an understanding of the underlying factors that control normal functioning, the impact of the neurodegenerative disorders on these activities and an appreciation for the complexity of study designs currently used to help elucidate these effects. Further research is needed to help differentiate the effects of multiple variables (including surgical targets, programming techniques, medication choices and patient-related factors) in order to arrive at better predictive models that can be used to help counsel patients with regard to the likely outcome of DBS surgery upon gait and balance.

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Push-Ups 4 Parkinson's Challenge

Date: May 01, 2015

A Fun & Friendly Challenge to Flex Some Muscle for Parkinson's

Cardel Homes is partnering with the Parkinson Association of the Rockies in a push-up challenge to raise funds and awareness to fight this debilitating disorder that affects over 4 million people worldwide. 


Participants are asked to challenge one another to do push-ups (creativity is highly encouraged), record it on video and post it on the Push-ups 4 Parkinson’s Facebook page with the hashtag #pushups4parkinsons and then donate a desired amount to their local Parkinson’s organization.


Cardel Homes will also match contributions made to the Parkinson Association for this campaign dollar-for-dollar, for up to a total of $25,000!


Check out info below to help you get your “guns” ready…the Push-ups 4 Parkinson’s Challenge kicks off May 1 and runs for 60 days.


It’s as easy as 1, 2, 3… Video | Donate | Nominate

 1. Video yourself doing push-ups (creativity encouraged) and upload it to Facebook with the hashtag #pushups4parkinsons

 2. Donate to your local Parkinson's organization

 3. Nominate friends (one or many) to take the Push-ups 4 Parkinson's Challenge


 Click here for more information. 


 Click here to donate.

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e3- educate, empower, energize 2014

Date: Apr 28, 2015

Our 2014 E3 - educate, empower, energize conference was engaging and powerful. Don't believe us? Take a look at some of our videos from the conference. 

SAVE THE DATE! 2015 E3 conference will be on Friday, October 9th at the Marriott Denver Tech Center. Stay tuned for more information! 

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Colorado Community Conference Presentations

Date: Apr 24, 2015

The conference, brought to you by the Parkinson Association of the Rockies, focused on research, medications and tips & tricks through seminars and panel discussions. 

Conference also included a Clinical Research Resource Fair. This Fair provided an opportunity for conference participants to speak directly with clinicians and physicians who currently have open research trials as well as individuals who have participated in past and/or present clinical research trials.


Ming-Lee Chow, SPT, University of Colorado, Boxing for Parkinson's  

Stuart Issacson, MD, Understanding Parkinson's 

Katherine James, PhD, MSPH, SCE, University of Colordo Boulder, Groundwater Pesticide and the Occurance of Parkinson's Disease

Benzi Kluger, MD, University of Colorado Hospital, Neuroimaging & Neurostimulation: Going Inside the Black Box 

Rajeev Kumar, MD, Movement Disorders Center, Importance of Clinical Trials in Colorado

Margaret Schenkman, PT, PhD, University of Colorado Hospital, Exercise for Parkinson's

Ronald Tjalkens, PhD, Colorado State University, Glial Cell Research 


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Robin Williams and Parkinson's Disease

Date: Aug 18, 2014

I'm sure you've all heard by now that Robin Williams was in the early stages of Parkinson's before he committed suicide and that he was currently experiencing a very serious episode of depression. While it would be beyond presumptuous to try to diagnose from afar what he was going through at the end of his life, I think that it is still important to open a discussion about this topic. 

From the perspective of the Parkinson's community, I think the most potentially damaging element of this story is that the general population could equate Parkinson's with a death sentence or come to believe that suicide might truly be a viable option to consider, particularly in the earliest stages of the disease. To be sure, it is normal to experience situational depression when receiving a life-changing diagnosis such as Parkinson's disease. However, it's also critical to recognize that the process of the condition will itself often amplify symptoms of depression and other psychological conditions (including apathy as well as anxiety). Most importantly, I want to highlight the fact that there are treatment options particularly because the link between depression and Parkinson disease is so intertwined within the neurochemistry of the brain. 

At the most basic level, Parkinson's is a result of a problem in dopamine regulation. For those with the condition, not enough dopamine is produced in the substantia nigra (a structure in the midbrain) and as a result, there is a suppression of movement, energy and activity. All of this results in systemic effects at all levels including mental health. To be sure, that is a significant oversimplification of what happens, and the influences of the lack of dopamine firing are complex. However, neurons work together in a complex system and when the dopamine cells stop "firing" as frequently (due to loss of the dopaminergic cells), it has an impact on other cells in the vicinity. To quote one of my favorite doctors in Colorado, Dr. Avi Kurtz, “If you have a dopamine firing problem, you have a serotonin firing problem and a norepinephrine firing problem and a whole cascade of other neurotransmitters are affected (not to mention the influence of fatigue, pain, changes in cognition, among others).”

I think that this is an opportunity to bring awareness to the Parkinson's community that depression is often a biochemical fact of life with the disease. We should be helping to get people with Parkinson's past the societal stigma of pharmacological treatment, as well as educating them as to how incorporating high intensity physical activity together with medication is likely to produce the best treatment outcomes. To the general population, it's an opportunity to educate them about the link between depression and Parkinson disease. 

However, the most important opportunity here is to highlight the fact that the vast majority of the people that we see with a diagnosis today have been or will be living with the disease for decades. And of these, the vast majority of them are still able to live full and happy and productive lives. I don't say this to minimize the terrible nature of the disease but just to remind people that Parkinson's disease isn't some kind of death sentence. To be sure, it is a difficult disease to live with. But in my little corner of Colorado, we have a whole community of people living well with the disease and I've got to believe that is the case for most of the other Parkinson's communities around the US and beyond. 

Feel free to use any parts of this or even just the idea to help get the message out through your community. Please do what you want with this information and don't hesitate to reach out to me if there is anything I can do to help you. 

Sincerely, John Dean, MA CCC-SLP

Here are some resources that I've reviewed recently that I think have been helpful. 

1- Karl Robb 

Blogger and author of "a Soft Voice in a Noisy World", Karl Robb wrote a piece in the New Republic about the loss Robin Williams

Check out his blog as well as his book if you haven't already, he is a very insightful writer

2 -Diane Cook 

Colorado's own Diane Cook was recently featured on a newscast on this topic

3 - Davis Phinney Foundation 

The Davis Phinney Foundation for Parkinson's (www.DavisPhinneyfoundation.org) has a webinar from one of their Victory Summit's on the topic of depression 

Additional reference materials on this topic (and many others) can be found in their "Every Victory Counts" manual, which is just getting ready to be released in its third edition

In the meantime, you can download the "Mood and Behavior Worksheet" from the second edition Of "Every Victory Counts"

4- Parkinson Association of the Rockies

The Parkinson's Association of the Rockies has a staff social worker, Cari Friedman who is an excellent source of information in general and has specific training in relation to this area. 

5 - The Michael J. Fox Foundation

The Michael J. Fox Foundation has a section on their website highlighting these topics

6- FYI:PD 

We recently did an interview with Dr. Benzi Kluger MD MS, Clinic Director for the Movement Disorders Program at the University of Colorado, on the topic of nonmotor symptoms. Not only did we talk about psychological symptoms and Parkinson's disease but we also had a nice discussion about the palliative care clinic that he founded there a couple years ago (among the first, if not the first, program of this type in the US). 

7-Diane Rehm

Diane has been a great friend to the Parkinson's community and I would expect her to do a show on this topic sometime soon. 

She has a unique experience and perhaps a different perspective because her husband just passed away from the disease and had a terrible experience at the end of life 

She recently did an interview with Linda Ronstadt (who was diagnosed with Parkinson's disease last year). Although Parkinson's disease was not the primary focus of the show, they definitely get into the topic, particularly in the last third or so.

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FYI: PD with Dr. Benzi Kluger

Date: Aug 12, 2014

FYI:PD is a monthly program featuring Parkinson's experts answering questions submitted by listeners.Your hosts are Betsy Vierck, MS and John M Dean, MA CCC-SLP.
For the inaugural program, we are pleased to present Dr. Benzi Kluger, clinic director of the movement disorders clinic at the University of Colorado. He answers questions about nonmotor symptoms (NMS) in Parkinson's, which are important to people living with the disease but are seldom talked about. They include pain (yes, PD can hurt!), drooling, runny noses, profuse and frequent sweating, cognitive slowing and more.
Click here to view the first program.
The next guest will be Dr. Monique Giroux of the Movement and Neuroperformance Center of Colorado (http://www.centerformovement.org). The next recording will be available shortly via YouTube. If you have a question that you want answered by Dr. Giroux, please call the voicemail and leave John and Betsy a message at (720) 663-7840 or send them an email. You can reach Betsy Vierck at This email address is being protected from spambots. You need JavaScript enabled to view it. and John Dean at This email address is being protected from spambots. You need JavaScript enabled to view it.

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