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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

Thanks and Thriving Video Competition

Date: Sep 25, 2017

We are approaching the time of year when we hear that our community is struggling; especially those who have been recently diagnosed. They are feeling depressed, overwhelmed, stressed and alone. We know that the holidays and the looming winter weather play a role in this onset of melancholy; but this year we want to be proactive and help our community to thrive. To do this we need your support and participation.

We are creating a video contest challenge called Thanks & Thriving. We want you to create a short video about how you’re thriving. While we as an organization can do our best to help provide support and resources; we know that your voice is really what our community needs to hear.

We’re asking that you share your advice, suggestions, hope and inspiration. Consider: What would you have been thankful to hear or made aware of? What tip or trick have you been thankful to have?

Essentially, we’re asking you to share what you do to thrive.

Here’s how the Thanks & Thriving video campaign works:

  1. You’ll create a 30-90 sec video
    1. This can be done on any digital camera, smart phone or tablet
  2. You’ll submit your video by email to This email address is being protected from spambots. You need JavaScript enabled to view it. by Monday, November 6th
  3. The Association will be post submitted videos online by Wednesday, November 22nd
  4. You’ll vote, over the Thanksgiving Holiday weekend, for the most inspirational video by:    
    1. A person living with Parkinson’s
    2. A group supporting one another with their Parkinson’s (ie: support groups, exercise classes, etc.)
    3. A person caring for someone living with Parkinson’s (ie: spouse, child, friend, etc.)

           (Voting will be open from Thursday, November 23rd – Tuesday, November 28th)

   5. Winners for each category will be announce by Friday, December 1st

           (There will be a prize given to each winner)

After we’ve concluded the Thanks & Thriving video challenge we’ll continue to share these videos with those in our community who need some inspiration and to know they are not alone.

To give you an idea of what we’re thinking… here’s a sneak peek.

Margie Dahlin Sneak Peek

That’s just one perspective; and your perspective, your voice, is really important to share so we hope you’ll join us so our community can give thanks for your advice on how to thrive!

We’ll send you more info through our e-news and if you have any questions please contact the Parkinson Association (303) 830-1839 and ask to speak with Erica. 

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2017 e3 Presenter Presentations

Date: Sep 25, 2017

Our 5th Annual e3 educate, empower, energize conference on Saturday, September 16 at the Hyatt Regency Aurora - Denver Conference Center was full of laughter, creativity and community!

  • educate themselves about cognitive issues, as well as new research on marijuana for Parkinson’s
  • energize and express themselves through dance with Dance for PD founder, David Leventhal
  • empower themselves through the use of self-efficacy and humor to overcome fear

We captivated the crowd with Linda Olson, MD, a triple amputee who was recently diagnosed with Parkinson’s disease. Linda had people laughing, crying and left everyone with the upbeat reminder that, “It is useless to talk about what we can’t do, but what we can do!”.

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

  • educate themselves about cognitive issues, as well as new research on marijuana for Parkinson’s
  • energize and express themselves through dance with Dance for PD founder, David Leventhal
  • empower themselves through the use of self-efficacy and humor to overcome fear

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. 

Think Like a Dance, David Leventhal, Dance for PD

Stand Up to Gravity & Say, "NO" to Falls, Meredith Roberts, Roberts Empowered Movements Center 

May the Self-Efficacy Force Be With You, Diane Cook, Hal Pottle, Betsy Mathies

Research on Cannabis & Parkinson's, Benzi Kluger, MD, University of Colorado Hospital 

Cognition in Parkinson's Diseases, Aaron Haug, MD, BlueSky Neurology

 

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Ask the Expert: Deep Brain Stimulation

Date: May 31, 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: "Once Parkinson's symptoms begin to return after a successful DBS procedure, can anything be done to get back to the initial lack of symptoms?"

A: “Yes. It is expected that symptoms will eventually return as the disease progresses. Sometimes the DBS generator voltage or pulse width can be increased to provide more benefit. More usually the DBS system can be expected to decrease the medication usage by 50% initially. Once that has been accomplished, the DBS system is likely near the limit of what can be achieved. This does allow for the opportunity to increase medication once again over the coming years to continue symptom control."

                            - David VanSickle, MD, Denver DBS Center

 

 

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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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