Wednesday, November 5, 2014

PD News Update From John Dean

I would like to share this communication from my friend, John Dean, who is an ardent supporter for all things PD in Colorado.  He travels (almost continuously, it seems) nationally and internationally to stay abreast of the latest developments in PD and is actively involved with the Parkinson Association of the Rockies (PAR).  He is truly committed to helping the PD community.  Thank you John!!

I just wanted to send out a message to everyone about some upcoming events and other Parkinson’s information.

Dr. Kurtz Is Going to Kaiser
First, I'm sure you have all heard but just in case you haven't, Dr. Avi Kurtz will be heading over to Kaiser Permanente on January 1. If you have Medicare or some other insurance provider, he will no longer be able to see you. However, Kaiser is in open enrollment so you could make the switch to that company if you think that is the best solution for your needs.  if you already have Kaiser and had simply been waiting for this opportunity, I would start contacting your doctor now to schedule an appointment in January :-).
I have been in contact with a number of movement disorders specialists to see how to handle the large community of patients that have become accustomed to the quality of care that Dr. Kurtz has provided us over the last three years.
There are a number of neurologists in the community (not movement disorders specialist) and you may consider seeking out their help. Please don't hesitate to contact me if you need any guidance finding a local resource. However, I would recommend also trying to develop a relationship with a movement disorders specialist (i.e a Parkinson's expert).
There are a couple of movement disorders specialists who make office visits in the Boulder area and I wanted to pass along their contact information.  There are a couple of other potential options coming soon but I want to wait to see how those play out before making any announcements.

Dr. Monique Giroux and Sierra Farris
Dr. Monique Giroux and Sierra Farris have been seeing patients in Boulder for the better part of a year. Although they are based out of their "Center for Movement and Neuroperformance" in Englewood, they are in Boulder every month as part of a DBS clinic. They also see people in Fort Collins (again, I think it's currently one time per month). However, they are actively working to increase their presence up north as we speak. It would definitely be worth contacting them at their clinic and seeing whenthey are able to add you to their roster.
To schedule an appointment, call Ingrid McGruder at 303-781-0511
I also wanted to let everyone know that Sierra Farris is one of the best DBS programmers in the country. If you have had any issues that you cannot seem to resolve following DBS surgery, I would recommend giving her a call for a consult. Her experience and skills are simply unmatched.

DBS University
If you want to know more about DBS, Dr Giroux and Sierra Farris(as well as some of their colleagues including surgeon Adam Hebb as well as a physical therapist and a neuropsychologist) will be teaching "DBS University" a daylong program at the Longmont senior center on Saturday, December 6. http://www.centerformovement.org/calendar/action~agenda/page_offset~1/time_limit~1415458801

Dr. Heather Ene
Dr. Heather Ene, a movement disorders specialist from the University of Colorado, is also seeing patients in Boulder. Although she continues to be based out of the hospital in Aurora, she is currently in Boulder 2-3 full days per month, generally the 1st, 3rd and 5th Fridays with a long-term goal towards increasing to one day per week.
Address: (it is just across from NIST)
Dr. Heather Ene, MD
University Family Medicine at Boulder, 350 Broadway Street, Suite 130, Boulder, CO 80305 clinic: 720-848-9200
Referrals from providers should be faxed to 720-848-9202. The clinic will then call the patient to schedule an appointment.

DBS Presentation at the University Of Colorado
Also related to DBS, the University of Colorado is hosting a program with Dr. Olga Klepitskaya and surgeon Aviva Abosch to discuss the latest research including asleep versus awake DBS. That will be during the day on Monday, November 17 from 1:00 PM-2:30 PM at the UNIVERSITY OF COLORADO HOSPITAL, Anschutz Inpatient Pavilion 2, 12605 E. 16th Ave. Aurora, CO 80045. Cost: Free and Lunch will be provided. RSVP: talia.kay@uchealth.org or 720.848.7378.

Capturing Grace premiere
This is a documentary about "Dance for PD", produced by Dave Iverson (who also produced "My Father, My Brother and Me"). If you happened to be at the Global Community Conference (in Keystone Colorado) this past March, Dave gave us a little preview of some of the key scenes. "Capturing Grace" is premiering at the Stars Film Festival in Denver on November 17 and 18. Tickets and more information are available at http://www.capturinggracefilm.com/screenings/2014/11/17/capturing-grace-starz-denver-film-festival-1

Party with a House Fundraiser for the Parkinson's Association of the Rockies
On Saturday, November 22, the Parkinson's Association of the Rockies is hosting their second annual "Party with a House" fundraiser at old Chicago pizzeria in Broomfield (1280 E. 1st Ave.). This is a gingerbread house decorating competition and it can be a very nice way to spend some time with grandchildren or other young ones while raising money and awareness for Parkinson disease. There are a number of other venues in Denver throughout November and December. For more information and to register, visit www.parkinsonrockies.org/houseparty or call 303-830-1839.

Every Victory Counts (Third Edition)
I had a chance to take a look at the latest version of this very popular guide at a program with the Davis Phinney foundation in Dublin last month ("International Patient Empowerment Day" although I like to call it the DPF's first "International Victory Summit" ;-)). There is some great video, pictures and other information about this event available at www.move4Parkinson's.com/summit  
The foundation has secured a grant that allows them to provide a free copy of this book to every household affected by Parkinson's. In addition, f you reach out to the members of your support group, you can provide Anna Van Pelt at the Davis Phinney foundation (avanpelt@davisphinneyfoundation.org  - 303-733-3340) with the contact information and details for each member requesting a book and she will give you a set of books for you to pass out at your next support group event.
This is a great opportunity to provide high-quality information to your members while getting the word out about the Davis Phinney Foundation for Parkinson's, our hometown proud Parkinson's advocacy organization with national (and now international :-) reach).

An Opportunity for a Little Fundraising for the DPF
I would recommend that you take a moment during one of your support group meetings to pass out the book and let people know about the Davis Phinney Foundation for Parkinsons. Although the book is free, this is a nonprofit organization and I think all of our groups could take the opportunity to pay things forward and collect a few donations for the Davis Phinney foundation. Because they have gone through the not insignificant effort of securing a grant, they are able to provide the book to anybody and everyone who needs this information but it doesn't hurt to give a little back when you can :-).

PD Me - an app for Parkinson’s (full disclosure, I am involved in this project).
If you happened to be at the E3 a couple of weeks ago, you may have seen app developer Marc Silverman demoing a new app we have been collaborating on for the better part of the year. It has finally been released on the app store https://itunes.apple.com/us/app/pd-me/id927178736?mt=8 . In under two minutes, PD Me can provide you with a quick snapshot of your current function and give you valuable insight about the impacts of your symptoms, medication timing and other elements. So fire up those brand-new iPhone 6's and check it out :-)
We are currently working on a number of other tools for version 2.0  including a version for Health Care Professionals.  We're definitely looking for anybody interested in helping us test the device out.

Boxing For PD
Last week, I had the opportunity to attend the "Boxing for PD" program at the Salvation Army gym near Stapleton. It was an excellent event with so many possibilities for people in our community. Moreover, there are a couple of Life Care PT's, Hope Engel and Meredith Roberts, donating their time and expertise to Rick Schwartz of PAR, former professional boxer Anthony Mora and CU PT student Lee Ming. If you're looking for a challenge and a new experience, I can't recommend this program highly enough. It is being hosted on Saturdays at 10:00 AM at the Salvation Army, Denver Red Shield, 2915 High St, Denver, CO 80205
To register, contact the Parkinson's Association of the Rockies at 303-830-1839 or info@ParkinsonRockies.org.  For more information about what the program involves (i.e fitness level), contact Lee at ming-lee.chow@ucdenver.edu
 
Conclusion
In the meantime, please don't hesitate to reach out to me if I can be of helpful or provide you with any additional information. I am always interested in hearing about any and all things Parkinson's related so please keep me in the loop and let me help get the message out.
I hope to see some of you at the "Partners in Parkinson's" event this Saturday. Next week, I'll be traveling to the West Coast to be part of the faculty for the Allied Team Training Program (ATTP) with the National Parkinson's Foundation and International Parkinson and Movement Disorder Society . I'll send along another message with any interesting information I get from that event.
-John
PS
I'm just getting started in helping John Carlin establish a cycling program for Parkinson's. We are in the earliest stages of development but if that's an area of interest to you, please send me a message so I can get you involved.
PPS Life Care Centers of America will be holding our "Parkinson's Warriors" high-intensity exercise programs again next year (http://www.timescall.com/lifestyles/health/ci_26302422/longmont-parkinsons-event-aims-combat-regression-exercise ).
We hope to expand it to more locations. If you think that's something you want in your neighborhood, just give me a quick email or phone call to let me know so I can include it in our planning.


John M Dean MA CCC-SLP
Parkinson Disease Specialist
www.johnmdean.com
john@johnmdean.com
303-532-6209

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