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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

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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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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Cheyenne Parkinson's Disease Support Group Awarded PCORI Grant

Date: May 14, 2014

The Cheyenne PD Support Group applied for and was awarded a PCORI grant to study 'Quality of Care for the Wyoming Parkinson's Community'.

At this point, we are really just doing research on feasible ideas on which to do research.
The whole reason for PCORI grants is to make sure that the ideas being researched are ideas that have been brought up by 'shareholders' of the PD community. Those shareholders being: the PD patients themselves, their caretakers and family, the medical personnel and tertiary medical personnel (such as physical therapists, massage therapists)

PLEASE! WE NEED YOUR IDEAS!

Please see the attached information on the PCORI research grant here. 

Feel free to share your ideas with us by contacting
 Dr. Christopher Herron - Lead researcher (and PD sufferer for 17+ years) at This email address is being protected from spambots. You need JavaScript enabled to view it. or Sandra Sundin - Administrator of PCORI Grant #7736942 at This email address is being protected from spambots. You need JavaScript enabled to view it. or (307) 274-0057. 

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Global Community Conference on Parkinson's Disease - Speaker Slides

Date: Apr 07, 2014

The Global Community Conference on Parkinson's Disease; Beyond the Limits, was held on March 2-4, 2014 in Keystone, Colorado at the Keystone Conference Center. The Parkinson Association, Teva Neuroscience and HealthOne presented the Global Community Conference as a one of a kind conference wihich aimed at bringing renowned experts in Parkinson's and related disroder out of their labs and classrooms for a unique opportunity to connect with those intersted in Parkinson's Disease care and managment. The conference provided a unique opportunity to connect the researchers who are working to solve some of the more global issues associated with Parkinson's Disease to come into cotact and have conversations with people living with the disease. 

Below you can find some of the slides of the presetantions from some of the renowned speakers we were lucky enough to have present at the conference. Note: We will be updating the blog when additional slides come in. 

 

Sleep & Fatigue, by Benzi Kluger, MD 

The Dynamic Family, by Jane Barton, MTS, MASM

Complementary & Alternative Medicine, by Lisa Corbin, MD

Make Exercise Medicine - Top 10 How To's, by Becky Farley, PhD

Nonmotor Symptoms in Parkinson's Disease, by Aaron Haug,MD

Caring Conversations, by Nora Reznickova, MD

Lewy Body Dementia, Parkinson's Sleeping Bear, by Helen & James Whitworth, Authors

Psychological Issues & Managment, by Benzi Kluger, MD

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Applying for Social Security Disability for Someone with Parkinson's Disease

Date: Apr 03, 2014

Parkinson’s disease is among the Social Security Administration’s (SSA’s) listing of impairments, which means there are clear-cut eligibility criteria for qualifying for disability benefits.

The Blue Book

To meet the SSA’s listing for the condition, which appears in Section 11.06 of the Blue Book, you must experience one of the following symptoms, and your symptoms must affect at least two of your extremities:

  • Serve muscle rigidity
  • Tremors
  • Uncontrollably slow movement known as Bradykinesia

As a result of your symptoms, you must also have:

  • Long-term issues with gross and dexterous movements
  • Pronounced issues with walking, standing, and moving about

Recent and thorough medical records are the key to proving your disability. These should include:

  • A detailed statement from your doctor summarizing your case
  • Documentation of any tests, including neuroimaging results supporting the diagnosis
  • Records of past and present medications and their affects

For more information on medically qualifying with Parkinson’s disease visit:  http://www.disability-benefits-help.org/disabling-conditions/parkinsons-disease-and-social-security-disability

 

The Compassionate Allowances Program

The SSA’s Compassionate Allowances (CAL) program ensures rapid review and virtually unchallenged approval of disability applications for certain medical conditions. Parkinson’s disease is not among the listing of CAL-approved conditions, but there are similar conditions which are:

  • Shy-Drager Syndrome
  • Neurologic Orthostatic Hypotension
  • Shy-McGee-Drager Syndrome
  • Parkinson's Plus Syndrome
  • Striatonigral Degeneration
  • Sporadic Olivopontocerebellar Atrophy

Collectively these conditions are known as Multiple System Atrophy (MSA) and they are quite similar to Parkinson’s disease and often seen in conjunction with it. They are in fact so similar that they are often diagnosed as Parkinson’s and are considered by many to be variants of the same disease: Parkinsonian syndrome. 

MSA can be extremely challenging to diagnose and to differentiate from Parkinson’s. Only specialists that are exceptionally familiar with all types of Parkinsonian syndrome are typically able to make the distinction.

To be eligible under CAL, you must have a formal diagnosis of MSA, not Parkinson’s. You must also be able to support your claim through appropriate medical records, which include:

  • MRIs of the brain showing abnormalities consistent with the disease
  • Physician notes, documenting progression of the disease and lack of response to available treatments
  • Neurological exam notes from specialist appointments
  •  Activities of daily living (ADLs) report(s) completed by a caregiver or relative, documenting the affects of symptoms on everyday life

Financially Qualifying for SSD Benefits

There are two disability programs the SSA runs:

  • Social Security Disability Insurance (SSDI)
  • Supplemental Security Income (SSI)

Medically qualifying is only half of the process. You must also meet the financial/technical eligibility rules in order to receive benefits through either or both programs.

  • For SSDI, you must have worked in the past and paid Social Security taxes. Those taxes amount to “work credits” and you must have a minimum number of work credits from the previous 10 years of your employment. You must additionally have earning from employment no higher than $1,070 per month (as of 2014).
  • For SSI, you must have very limited income and other financial resources, including assets, as this is a need-based program. 2014 limits are set at $721 per month, but only certain sources of income/resources are “counted”.

You can learn more about SSDI and SSI benefits here:  http://www.ssa.gov/disability/

Submitting an Application on Behalf of Someone Afflicted by Parkinson’s

The first step in filing a claim for SSD benefits is to complete the SSA’s application. This can be done online at the SSA’s website, or by making an appointment to complete your application in person at the SSA’s local office in your area. Filing online is often the fastest method for initiating a claim, but you will need to follow up at the local office to submit medical records and other supporting documentation.

It is also important to note that SSI applications can only be completed locally. Online application for this program is not available.

Keep in mind as well that the application for benefits is just one aspect of the claim you will file. Thorough medical records are also necessary. Additionally, ADL reports completed by you, the applicant, and by his or her doctor are also crucial.

When applying for benefits, either for yourself or on behalf of someone with Parkinson’s, you will want to consider consulting an attorney or Social Security advocate. Someone more familiar with the process can help you collect the necessary medical records and can assist with the initial application and any appeals that may be required.

Ram Meyyappan
Social Security Disability Help

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