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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

Latest

Ask the Expert: Marijuana and Parkinson's Disease

Date: May 02, 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: "Does marijuana have any benefits for those with Parkinson's?" 

A: “While there is a lot of hype about marijuana and Parkinson's disease, the scientific evidence is much less conclusive. There have been a few survey-based studies and uncontrolled trials that suggest marijuana may be helpful for some Parkinson's symptoms including pain, anxiety, sleep, appetite, and nausea. These studies also suggest that marijuana may help smooth out certain motor symptoms, including dyskinesias. However, to date, all randomized controlled trials of marijuana for motor symptoms in Parkinson's have been negative but it is possible that they were not using the right dose or formulation of marijuana. In my experience, marijuana is more likely to be helpful for non-motor symptoms (e.g. Pain, sleep, appetite) than motor symptoms. Also of note, marijuana may cause side effects including problems with balance or memory so caution should be used with this, starting with a low dose and going up slowly, as with any medication. Cannabis is a complex plant that contains over 65 psychoactive chemicals, many of which actually decrease dopamine thus more research is needed. Dr. Maureen Leehey at the University of Colorado is currently conducting a study of cannabidiol (CBD) for Parkinson's tremor. Interested persons can email Nicole Leith."

                            - Benzi Kluger, MD, University of Colorado Hospital 

 

 

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

Date: Mar 20, 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: "My husband has a really hard time with the levodopa-carbidopa needed to manage motor symptoms from Parkinson's. When he takes the drugs, he is so tired he needs to nap and is generally in a drunken state for hours. He is normal when not taking the drugs (except for motor symptoms). Our docs tell us this is not common but does happen. We have tried different dosage amounts and timing, but nothing has worked and this has been going on for a couple of years. It is ruining our quality of life and stressing our marriage. Do you have suggestions that could help us??"

 

A: "This is an uncommon situation but one which definitely comes up and can be fairly problematic. If you are in a position where you do not yet need levodopa or can manage your symptoms with exercise/physical therapy/occupational therapy this may be your best bet and I do have some patients who primarily manage their PD without medications because of side effects for quite some time. Unfortunately, this is not always a good long-term solution.


In some people this is a transient side effect and if they stick with levodopa (often for a few weeks to months) or go up on it slowly it may become less problematic. Unfortunately, other people seem to have this as a long-term side effect. It sounds like you may have tried taking other doses (e.g. Smaller, frequent doses) and/or formulations (e.g. Sinemet CR, rytary) which can help for some people.  There are other formulations in development (e.g. patches, nasal spray, accordion pill) and in clinical trials. If you are interested you might want to check foxtrialfinder, CNI, or the University of Colorado Movement Disorders Center to see if there may be research you could participate in. If you have not yet tried MAO-inhibitors (e.g. rasagiline, selegeline) or dopamine agonists (e.g. neurpro, ropinirole, pramipexole) these may be worth trying but are usually less effective than levodopa and dopamine agonists can also cause drowsiness.


Other tricks which can help is to try to make an effort to exercise or be active around the time you take the levodopa as it seems the side effect of drowsiness is more pronounced if one is resting or still as opposed to active. Alternatively, some people find taking a planned short power nap can help them avoid disruptions from the drowsiness and allow them to enjoy the rest of their good on time. Lastly, one could try taking another supplement (e.g. Caffeine) or medication (e.g. Amantadine, a stimulant) to try to treat the side effects of the levodopa.”

            - Dr. Brian Berman & Dr. Benzi Kluger, University of Colorado Hospital

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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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2016 Webinars

Date: Sep 16, 2016

We're ecstatic to announce our collaboration with AARP Colorado to bring the Parkinson's community free webinars through out the year! 

These webinars allow us to serve communities that we may not be able to physically get to and provide them with the education that they need. Plus, if you don't catch the webinar the day of, the webinar lives for an entire year after! 

1. Click the title of the webinar you want to view

2. Register for the event

3. Enjoy and learn! 

Make sure you're signed up for our enews, so you can get updates on when new webinars are coming out...click here to sign up. 

2016 Webinars

The Science and Practice of LSVT Loud: Speech Treatment for Parkinson's Disease, Angela Halpern, MS, CCC-SLP

Swallowing Problems in Parkinson's, John Dean, MA, CCC-SLP

Does Parkinson's Disease Affect Thinking and Memory?, Benzi Kluger, MD

Sleep & Fatigue in Parkinson's Disease, Drew Kern, MD

NonMotor Symptoms in Parkinson's Disease, Samantha Holden, MD

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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! 

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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
 
INTRODUCTION:
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.
 
EFFECTS OF ET AND PD ON GAIT AND BALANCE:
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.
 
EFFECT OF MEDICATIONS/NEUROTRANSMITTER SYSTEMS:
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).
 
DBS FOR ET:
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.
 
DBS FOR PD:
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.
 
NEW DIRECTIONS:
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.
 
CONCLUSIONS:
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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