Enhancing Lives, Connecting Communities
3 Colorado Support Groups
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Parkinson VoiceSpring 2018Volume 10, Issue 1
105 Exercise Classes2
FAREWELL & THANK YOU!
Seven years ago, the Association changed its logo to reflect hope and community through uplifted arms. Now we are updating and evolving our logo to add strength and courage to the uplifted hands. Our logo better reflects the depth of today’s Colorado Parkinson’s community, your community; a strong, vibrant community determined to thrive. The strong arms are still rejoicing in conquering the peaks and navigating the valley’s of Parkinson’s. The bolder font demonstrates the determination and tenacity of the Colorado Parkinson’s community to thrive with Parkinson’s. The overall strength of this logo reiterates the Parkinson Association of the Rockies’ commitment to always seek out and deliver programs and services that connect and empower people with Parkinson’s to thrive; to provide the care that counts on the way to a cure.
In January 2011, I was honored to be selected to serve as your Executive Director. After seven glorious years, I am retiring to embark on my next journey. While I have done many things in my life, serving the Parkinson’s community has been the highlight of my career. I am humbled and stand in awe of the tenacity and determination of the Parkinson’s community. With your strength, courage and perseverance you have provided the energy for the growth and change seen over these past seven years. Where once there were only seven weekly exercise classes, community members now have the opportunity of attending more than 46 weekly exercise classes. Seven years ago our newsletter circulation was 2,800; community demand and engagement has raised that circulation to over 12,000. During my tenure, you challenged us to build; we did, and you came to support. You challenged us to reach higher; we did, and you responded through
your engagement. You have taught me and you have urged the Association to be bold and ever-present. This is an ongoing challenge we gladly accept. To live up to this challenge, we are introducing a new logo that better reflects the strength of our constituents and the Parkinson Association of the Rockies.
Thank you all for your support and for sharing your determination, strength, hope and courage. I retire a better person because of you.
Sincerely,
Cheryl Siefert, MNM
It Takes a Village to Build Awareness
Hello from the Executive Director
Nurturing YourselfThrough Your Loved Ones Illness
2018: A YEAR OF NEW BEGINNINGS
2018
2011
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HELLO FROM JODI BROWN, EXECUTIVE DIRECTOR I am excited and humbled as I step into the Executive Director position for the Parkinson Association of the Rockies. I am fortunate to be joining such an outstanding organization with an amazing team in place. I am looking forward to many years of growth in this organization. I am excited to serve our current constituents with enhanced programs, while continuing to grow our services throughout the state.
While my background is in corporate finance and marketing, I have been honored to serve on nonprofit boards where I was actively involved in expanding the programs and services while remaining focused on the mission and the people served. Having owned my own business for the last ten years, I understand the importance of listening to and meeting the needs of the community I am serving; and implementing programs and services to best serve the community. I look forward to working with all of you, and continuing the great tradition of cutting-edge programs and services which have already been established by this organization. I am looking forward to meeting as many of you as possible and sharing your ideas that will help us all continue to take the Parkinson Association of the Rockies to even higher peaks and ensure the Colorado Parkinson’s community continues to soar.
As we head into 2018, we have a lot of exciting plans in place. We currently offer 46 exercise classes each week, and we are adding three new classes in the Denver Metro area, as well as expanding our exercise classes to Carbondale, Durango, Longmont and Grand Junction. I’ve already had the honor of meeting some of the support group leaders and know how valuable this time is for people with Parkinson’s and their care partners. There are currently 49 support groups, and we have three new groups joining the community as well. Windsor Gardens in Denver is already up and running, and we
are working on starting a group in Moffatt County and another care partner support group in South Denver. In addition to the exercise classes and support groups, we are working to overhaul our Equipment Loan Program to make sure we have sufficient U-Steps walkers available for those who are currently on our wait list, or will have a need in the future.
Our educational programs are already in full swing, and we had our first webinar of the year. We have a full schedule of webinars, Chat with the Parkinson’s Pros and Ahead of the Curve seminars coming throughout the year. Make sure to read the eNewsletter to register for the webinars, or attend a live educational event close to you. Lastly, the Parkinson Association of the Rockies will be heading up two conferences this year – the Colorado Community Conference is returning this Spring (see page 4 for more information) and the much loved e3 educate.empower.energize conference will continue this Fall.
I look forward to meeting with and getting to know all of you,
Jodi Brown, Executive Director, Parkinson Association of the Rockies
WE CARE ABOUT CARE PARTNERS!For tips for the care partner and respite care resources, contact Cari Friedman, LCSW at (303) 861-1810 or [email protected]
For more information on Support Groups and contact information for support group leaders, please contact the Parkinson Association of the Rockies at (303) 830-1839 or [email protected].
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ARVADA2nd Friday • 1:30pmCommunity Recreation Center of Apex6842 Wadsworth Blvd.
BOULDER3rd Monday • 10:30am Frasier Meadows Retirement CommunityMountain Vista Room, 2nd floor350 Ponca Pl.
BROOMFIELD Friday after 1st Tuesday • 10:30amBroomfield Community Center280 Spader Way
COLORADO SPRINGS3rd Friday • 1:30pm Care & Share Building2605 Preamble Pt. Provided by Colorado Springs Parkinson’s Support Group www.co-parkinson.org
DENVER4th Wednesday • 6:30pmNo Meeting in June or JulyScheitler Recreation Center5031 W. 46th Ave.
ENGLEWOODMSA/PSP/CBD4th Friday • 10:00amJohnson Adult Day Center3444 S. Emerson St.
EVERGREENThursday before 1st Friday • 3:00pmLariat Lodge Brewery 27618 Fireweed Dr.
LONGMONT1st Tuesday • 11:30amPerkins Restaurant2051 Main St.
STEAMBOAT SPRINGSContact Parkinson Association
CARE PARTNER SUPPORT GROUPS
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ARVADA3rd Thursday • 1:00pmCommunity Recreation Center of Apex6842 Wadsworth Blvd.
AURORA2nd Tuesday • 1:00pmHeather Gardens 2888 S. Heather Gardens Way
BOULDER4th Tuesday • 10:00am Frasier Meadows Retirement350 Ponca Pl.
BRUSHQuarterly MeetingsContact Parkinson AssociationEben Ezer Lutheran Care Center122 Hospital Rd.
BROOMFIELD1st Tuesday • 10:30amBroomfield Community Center280 Spader Way
BUENA VISTA1st Saturday (ODD months) 10:00am127 Hill St.
CEDAREDGE1st Wednesday • 9:30amCedaredge Assembly of God1596 S.W. 9th St.
CENTENNIAL2nd Thursday • 10:30amHolly Creek Retirement Community5500 E. Peakview Ave., Fellowship Hall
CHERRY HILLS VILLAGE2nd Wednesday • 11:00amBethany Lutheran Church4500 E. Hampden Ave., Room 315
2nd Thursday • 6:30pmBethany Lutheran Church4500 E. Hampden Ave., Room 315
MSA/PSP/CBD 2nd Friday • 10:00amFIrst Plymouth Congregational Church3501 S. Colorado Blvd.
COLORADO SPRINGS/MONUMENTProvided by Colorado Springs Parkinson’s Support Group www.co-parkinson.org The Young MINDset Parkinson’s2nd Wednesday • 5:00pmVisit www.co-parkinson.org
2nd Saturday • 10:00amFirst Presbyterian Church105 N. Weber St.
3rd Saturday • 10:00am Woodland Park Library218 E. Midland Ave., 3rd floor
3rd Saturday • 10:00amTri-Lakes Senior Center17250 Jackson Creek Pkwy., Monument
DENVER3rd Monday • 10:00amWindsor Garden595 S. Clinton St.
Recently Diagnosed (1-3 years)4th Tuesday • 11:30amChrist Episcopal Church2950 S. University Blvd., Barnes Hall
Parkinson’s & Lewy Body Dementia3rd Thursday • 6:00pmRoss University Hills Library4310 E. Amherst Ave., 2nd Floor Conf.
3rd Thursday • 6:00pmDahlia Campus for Health & Well-Being3401 Eudora St.
DURANGO3rd Thursday • 1:00pm First United Methodist Church2917 Aspen Dr.
EAGLE VALLEY/EDWARDS4th Thursday • 5:00pmTrinity Church90 Lariat Loop
ESTES PARK3rd Tuesday • 2:00pm US Bank Building363 E. Elkhorn Ave.
EVERGREEN1st Friday • 1:00pm Evergreen Christian Church 27772 Iris Dr.
FORT COLLINSRecently Diagnosed/Young Onset4th Monday • 6:30pmCouncil Tree Library2733 Council Tree Ave.
1st Wednesday • 10:30amFt. Collins Senior Center1200 Raintree Dr.
GRAND JUNCTION1st Wednesday • 3:30pmFirst Christian Church1326 N. 1st St.
GREELEY4th Thursday • 10:00amFMS Bank 2425 35th Ave., Lower Level
HIGHLANDS RANCH4th Tuesday • 10:00amHighlands Ranch Library9292 Ridgeline Blvd.
3rd Friday • 10:00amWind Crest Community3235 Mill Vista Rd. LAFAYETTE4th Tuesday • 2:30pmExempla Good Samaritan Med. Center200 Exempla Cir. LITTLETON3rd Saturday • 3:00pmNo Meeting in June or JulyMorning Star Senior Living5344 S. Kipling Pkwy.
LONE TREE Young Onset3rd Friday • 6:00pmFox & Hound9239 Park Meadows Dr., Mezzanine Rm.
LONGMONT2nd Wednesday • 10:00amLongs Peak United Methodist Church1421 Elmhurst Dr.
LOUISVILLELast Tuesday • 2:00pmBalfour Retirement Community 1855 Plaza Dr., Wellshire Unit
LOVELAND/JOHNSTOWN3rd Friday • 10:15amGood Samaritan - Loveland Village2101 S. Garfield St.Majestic View Private Dining Room
MSA/PSP/CBD 2nd Friday • 1:00pmNorthern Colorado Rehab Hospital4401 Union St.
MONTROSELast Monday • 2:00pmMontrose Memorial Hospital800 S. 3rd St., Room B
PARKER2nd Tuesday • 10:00am Life Care Center of Stonegate 15720 Garden Plaza Dr.
PUEBLO 2nd Tuesday • 11:15am YMCA Campus3200 E. Spaulding Ave., Room B SALIDA1st Saturday (EVEN months) 10:00am205 G St.
STEAMBOAT SPRINGS2nd Monday • 5:00pmCasey’s Pond2855 Owl Hoot Trail
SUMMIT COUNTY3rd Friday • 10:00amContact Parkinson Association
WESTMINSTER1st Monday • 1:15pm Covenant Village Retirement 9153 Yarrow St., Evergreen Room
WHEAT RIDGE3rd Wednesday • 10:00amApplewood Baptist Church11200 W. 32nd Ave.
SUPPORT GROUPSFor more information on Support Groups and contact information for support group leaders, please contact the Parkinson Association at (303) 830-1839 or [email protected].
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APRIL 6 • 2:00 - 3:00PMAhead of the Curve: Medications Overview Webinar www.ParkinsonRockies.org
APRIL 11 • 6:00 - 8:00PMAhead of the Curve: Palliative CareHealthSouth Rehabilitation Hospital, 1001 W. Mineral Ave., Littleton
APRIL 14 • 10:00AM - NOONChat with the Parkinson’s Pros: Nonmotor SymptomsLaramie County Library, 2200 Pioneer Ave., Cheyenne
MAY 12 • 8:30AM - 2:00PM Colorado Community Conference Hyatt Regency Aurora-Denver Conference Center, 13200 E. 14th Pl., Aurora
MAY 16 • 12:00 - 1:00PM Ahead of the Curve: Treatments for Advanced Parkinson’s DiseaseHealthSouth Rehabilitation Hospital, 325 S. Parkside Dr., Colorado Springs
MAY 19 • 10:00AM - NOONChat with the Parkinson’s Pros: Nonmotor SymptomsMercy Regional Medical Center, 1010 Three Springs Ave., Durango
MAY 23 • 6:00 - 8:00PMAhead of the Curve: Deep Brain Stimulation Bethany Lutheran Church, 4500 E. Hampden Ave., Cherry Hills Village
JUNE 3 • 9:00 - 11:00AM 16th Annual Vitality Walk Washington Park, Denver | Sandstone Ranch, Longmont See back page for more information.
JUNE 12 • 11:00AM - 12:00PMAhead of the Curve: What If It’s Not Parkinson’s? Webinar www.ParkinsonRockies.org
JUNE 16 • 10:00AM - 2:00PM Chat with the Parkinson’s Pros: Topics NOT Regularly DiscussedGrand Vista Hotel, 2790 Crossroads Blvd., Grand Junction
JUNE 19 • 2:00 - 4:00PMAhead of the Curve: Sleep & Fatigue Community First Foundation, 5855 Wadsworth Bypass, Unit A, Arvada
JUNE 26 • 2:00 - 4:00PMAhead of the Curve: Parkinson’s 101 Balfour, 1500 Little Raven St., Jockey Club Room, Denver
JULY 14 • 9:00 - 11:00AMChat with the Parkinson’s Pros: Deep Brain StimulationCommunity Center, 1605 Lincoln Ave., East Room, Steamboat Springs
UPCOMING EVENTSFor more information or to register for any of the following events, please call (303) 830-1839 or email [email protected]. Continue to check our event calendar on our website at www.ParkinsonRockies.org for updates on event details and for additional programs.
SATURDAY, MAY 12 • 8:30AM - 2:00PM HYATT REGENC Y AURORA-DENVER CONFERENCE CENTER, 13200 E. 14TH PL., AURORA
The Parkinson Association of the Rockies’ Colorado Community Conference is Colorado’s premier conference focused on Parkinson’s research and treatments.
2018 marks the third Colorado Community Conference. This conference brings together individuals with Parkinson’s, their care partners and family members, as well as professionals who work with the Parkinson’s community to provide them with updates on the latest research on Parkinson’s, medications and medical devices. The conference also includes a Clinical Research Resource Fair. This Fair provides 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.
CONFERENCE DETAILS: Registration is FREE, but required. Lunch will be provided. For more information and to pre-register visit www.ParkinsonRockies.org/CommunityConference or contact the Association at (303) 830-1839 | [email protected].
Northern Colorado Transportation: A bus will be available to bring participants coming from Northern Colorado to the event at no cost. For more information, contact Elena Cussler at [email protected].
Additional Sponsorship Opportunities Available: Contact Jodi Brown at [email protected].
Special Thanks to Our Sponsors
PARKINSON ASSOCIATION CLASSESA liability waiver from your doctor is required. As of November 2017, we no longer charge for these classes, but encourage participants to Pay It Forward. Not all classes meet every week. For more information, please contact (303) 830-1839 or [email protected].
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POWER PUNCH PARKINSON’S NON-CONTACT BOXINGMondays • 2:00 - 3:00pm Ed & Ruth Lehman YMCA950 Lashley St., Longmont
Tuesdays • 3:00 - 4:00pm UFC Highlands Ranch7824 Park Meadows Dr., Lone Tree
Tuesdays • 4:00 - 5:00pmGrinders Fitness455 W. 115th Ave., Unit 4, Northglenn
Tuesdays • 4:30 - 5:45pmOld School Boxing2112 E. Platte Ave., Colorado Springs
Wednesdays • 10:00 - 11:00amDenver Red Shield2915 High St., Denver
Wednesdays • 10:30 - 11:30amHybrid Nation Martial Arts 150 Beaver Creek Blvd., Avon Wednesdays • 10:45am - Noon TITLE Boxing Club4360 S. College Ave., Fort Collins
Thursdays • 4:30 - 5:45pm Old School Boxing2112 E. Platte Ave., Colorado Springs
Fridays • 10:30 - 11:30amHybrid Nation Martial Arts 150 Beaver Creek Blvd., Avon Fridays • 10:45am - NoonTITLE Boxing Club4360 S. College Ave., Fort Collins
Saturdays • 9:00 - 10:15amOld School Boxing2112 E. Platte Ave., Colorado Springs
Saturdays • 9:00 - 10:30amDenver Red Shield2915 High St., Denver
Saturdays • 11:30am - 12:30pmOld Town Hot Springs136 S. Lincoln Ave., Steamboat Springs
TAI CHI2nd Thursday • 11:00am - NoonYoga Center of Steamboat701 Yampa Ave., Steamboat Springs
CIRCUIT TRAINING FOR PARKINSON’SMondays • 10:00 - 11:00amTriple Threat Gym5739 Observation Ct., #120, Colorado Springs
Tuesdays • 11:15am - 12:15pmKelly Performance and Wellness10835 Dover St., Ste. 1300, Westminster
YOGA FOR PARKINSON’STuesdays • 9:30 - 10:30amHealthSouth Rehabilitation Hospital of Littleton1001 W. Mineral Ave., Littleton
Wednesdays11:00am - Noon12:30 - 1:45pmScheitler Recreation Center5031 W. 46th Ave., Denver
Thursdays 11:00am - NoonYoga Center of Steamboat701 Yampa Ave., Steamboat Springs
Thursdays • 8:00 - 9:00amHigher Intensity YogaVernon PT & Wellness7373 S. Alton Way, Ste. 120, Centennial
Thursdays • 11:30am - 12:30pmThe Center for Integrative Medicine University of Colorado Hospital3055 Roslyn St., Ste. 250, Denver
Thursdays • 1:00 - 2:00pmChair Yoga ClassLife Care Center of Stonegate15720 Garden Plaza Dr., Parker
PAFIT HIIT CLASS Thursdays • 10:45 - 11:45amFit36 Studios 9370 S. Colorado Blvd., Ste. A-2, Highlands Ranch
B.E.A.T. HIGH INTENSITY EXERCISEThursdays • 12:15 - 1:15pm5700 W. 25th Ave., Edgewater
ESSENTRICS CLASSMondays • 8:30 - 9:30amUnited Methodist Church 736 Oak St., Steamboat Springs
Fridays • 9:00 - 10:15am United Methodist Church 736 Oak St., Steamboat Springs
EXERCISE CLASS Mondays • 10:30 - 11:30amThe Haven Assisted Living Center300 S. Shelton St., Hayden
Wednesdays • 11:00am - 12:15pmUnited Methodist Church 736 Oak St., Steamboat Springs
PAR FOR THE COURSE EXERCISEMondays • 11:00am - NoonHighlands United Methodist Church3131 Osceola St., Fellowship Hall, Denver
Tuesdays11:30am - 12:30pm, High12:45 - 1:45pm, LowSchlessman YMCA3901 E. Yale Ave., Denver
Wednesdays • 1:45 - 2:45pm, Low Southwest YMCA5181 W. Kenyon Ave., Denver
Thursdays • Noon - 1:00pm, Low Schlessman YMCA3901 E. Yale Ave., Denver
Fridays • Noon - 1:00pm, HighSchlessman YMCA3901 E. Yale Ave., Denver
High Intensity: for individuals early inthe diagnosis of Parkinson’s diseaseLow Intensity: for individuals who needassistance with mobility
PWR! CLASSMondays • 1:45 - 2:45pmTherapies of the Rockies300 E. Hampden Ave., Ste. 100, Englewood
Wednesdays • 11:00am - NoonGarden Plaza of Aurora14221 E. Evans Ave., Aurora
Wednesdays • 11:00am - NoonDurango Recreation Center 2700 Main Ave.,Twilight Room, Durango
TREMBLE CLEFS2nd Wednesdays • 11:00am - NoonValmont Community Church3262 61st St., Boulder
RHYTHM AND GRACE:DANCE FOR PD® Mondays • Noon - 1:15pmColorado Ballet1075 Santa Fe Dr., Denver
TANGO DANCE CLASS Tuesdays • 2:30 - 3:30pmSt. Barnabas Episcopal Church1280 Vine St., Denver
GOOD VIBRATIONSThursdays • 1:00 - 2:00pmRehabilitative Rhythms Music Therapy 2222 S. Fraser St., #2, Aurora
LOUD FOR LIFEMondays • 2:00 - 3:00pmOur Father Lutheran Church6335 S. Holly St., Rm. 300-301, Centennial
Wednesdays • 1:00 - 2:00pmGardens on Quail 6447 Quail St., Arvada
AQUATIC AEROBICSSundays • 10:00 - 11:00amOld Town Hot Springs Pool136 Lincoln Ave., Steamboat Springs
WALKING GROUPMondays • 8:00 - 9:00amFairmount Cemetery 430 S. Quebec St., Denver
Thursdays • 8:00 - 9:00amHighland Heritage Regional Park9651 S. Quebec St., Highlands Ranch
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DONATIONS Your thoughtfulness helps the Parkinson Association continue to provide services & support. The following gifts were received between November 1, 2017 – February 28, 2018
MEMORIALSGregg Abell
AnonymousCol. ET Archuleta
Emily ArchuletaLita Arehart
Jim ArehartWilliam Askwig
Mona AskwigHelen Bacheller
AnonymousBarbara Baller
AnonymousRichard Berger
The Colorado Association of REALTORS
Don Bohning Larry Bohning & Marie Fitzpatrick
Elaine Bornmann Marilyn J. DorseyDonna & Dan GerlachTracy & Dennis HuddlestonDawn & David KoldykeCharlene & Ned VogelChris & Sandy Vogel
Harry & Elaine Bornmann Marcella BuhrSandra & Jacob Schlemmer
Paul Browne Helen BrowneCarol Sandy
Jerry Carr Barbara CarrJulie CarrC & M Iron & Metal Co.
Ruth Carrell Kenneth & Candace Lyon
Roger W. Catlin Janet C. Loughry
Myung Cha Mercy IPT
Marvin Clein Donna Rood
Robert L. Clifton Heather Clifton
Rita Corn Joan Miller
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Jo Ann Crew Anonymous
Clifford L. Cryer Anonymous
Barbara Ann Curtis Robert Curtis
Monireh Darbandi Robabeh Jamshidy
Ina Day Cynthia Withers
Dan Dayton Stephanie Feuer & Norman Friedman
Colman L. Dell Martha Dell
Earl Huffman Marie Huffman
Dan Ivarson Arnold Schenck
LeRoy Kats Carol KatsLawrence & Helen RooseJohn Sodia, III
Ann Kehoe Robert Kehoe
Dr. Randy Kessler Dawn Kessler
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Annette Lammers Margie Wood
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George Laue Elaine Laue
Dick Lazzeri Tom & Marge Bassett
Janice Lehman Amy LehmanDaniel Lehman
Hans J. Liebe Roswita Liebe
Wills Long Pat Long
Richard W. Loughry Janet C. Loughry
Caroline Luttrull Jessica Langren
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William Patrick McGovern Joan & Bill CoteMark & Milena McGovernMark & Debbie PorterAnne & George Romero
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Join us on Saturday, July 21 for the 6th Annual Breaking Par for P.A.R. Golf EventA Golf Experience in Honor of Gary Bass and Those Touched by Parkinson’s
Walnut Creek Golf Preserve | 10555 Westmoor Dr., Westminster6:00am Event Check-in | 6:30am Driving Range Open and Putting Challenge | 8:00am Shotgun StartRegistration: $110/Player (Register as Foursome, Pair or Individual Golfer)
To Register: www.ParkinsonRockies.org/BreakingPar4PARAll proceeds from the event will benefit the Parkinson Association of the Rockies’ programs and services in honor of Gary Bass and those touched by Parkinson’s.
Interested in sponsoring? Contact the committee at (720) 339-8599 | [email protected]
Special Thanks to Event Sponsor:
GOLF FOR A GREAT CAUSE
NURTURING YOURSELFTHROUGH YOUR LOVED ONE’S ILLNESSBy Laura Michaels, LPC, JD, Mental Health CounselorWhen your partner or loved one is diagnosed with Parkinson’s, your world changes. Not only are you each impacted individually by this development, but your relationship must acclimate to a new reality. Adapting our lives can leave us searching for guidance to help us move through our pain to a place of hope and peace.
Accepting a New NormalParkinson’s disease is an unwanted visitor when it comes to our door. But, as unacceptable as the intrusion may feel, we have to learn to cope with the fact that it is here to stay. This reality becomes our new normal, something we must integrate into our lives. It is not realistic for us to think we can go back to exactly how things used to be. We move forward together, incorporating the new normal into the essence of our lives.
Living Your Old Life TooEven as we adjust to the new normal, most aspects of our old lives continue to happen. We celebrate birthdays, anniversaries, holidays, weddings and new babies. We go to social, school and work events. Other family members have their own health or personal problems and we want to support them. It is important that we don’t allow our loved one’s illness to rob us of the joys, sorrows, activities and relationships that make us who we are. If we step entirely out of the structure of what is routine and familiar to us, we will lose ourselves and find that the only identity left of us is that of care partner and patient. Being present for our lives helps us maintain a sense of ourselves and keeps us connected to the people and events that are important to us.
Allowing Yourself to GrieveWe often think of grieving as something we do when someone dies. While illness can bring many losses, it is healthy to acknowledge and feel them. Parkinson’s disease brings with it justifiable sadness and it isn’t helpful to completely shun or dismiss those difficult emotions. It can be very productive to specifically name your loss. For example, if your friend tells you she is planning a cruise with her mother next year, you may grieve that you are not
in a position to plan such a vacation in the foreseeable future. If your spouse is unable to go to work or do tasks around the house, you may grieve the loss in his or her capacity. You may grieve the loss of your expectations for the future, your loss of optimism, your sense of security. It is adaptive to allow yourself to notice and validate real losses that are occurring in your life.
Finding Opportunities to GrowAs care partners, it can sometimes feel like an achievement just to get out of bed in the morning and face the necessary tasks of the day. But are there ways you can grow? Things you can learn? Maybe you find new appreciation for your ability to be brave, selfless, empathic, strong. Perhaps you see yourself stretching beyond what you ever imagined was within your range. When we handle a difficult situation well or when we fight exhaustion and fear to rise to our highest level of functioning, we are afforded the opportunity to provide our lives with ultimate meaning and create a connection with our loved one that is more authentic than it was before the health crisis. This level of awareness may not be constant, or even often, as caregiving may also be truly sad and overwhelming. When you are able to notice the more transcendent moments, it can be both gratifying and inspiring.
There are many other ways to nurture yourself and your loved one while living with Parkinson’s disease. In this article, I have only been able to touch on a few. In my recent book, Living in Limbo: Creating Structure and Peace when Someone You Love is Ill, co-authored with Dr. Claire Zilber, we discuss these topics and many others in depth. For those of you are engaged in this process of caregiving for your partner, I wish you fortitude, resilience and serenity.
Laura Michaels is a mental health counselor in private practice in Denver, Colorado. She specializes in trauma, grief, illness, life transitions, depression, anxiety and works to help clients find purpose and meaning in their lives. You may reach Laura Michaels at www.lauramichaelscounseling.com.
VOLUNTEERINGWITH THE PARKINSON ASSOCIATION
We need your help! Even with all of our educational events, fundraising events, exercise classes and support groups, it can still be hard to get the word out to the right people.
Throughout the year there are many new and recurring programs and services that come about. To better serve those in the Parkinson’s community that may not be connected with us yet, we need people like you all over Colorado to help post flyers, brochures and postcards at the places you frequent most (e.g., coffee shops, doctor’s offices, libraries). As events near, we will provide you with the marketing materials for you to distribute among the local community.
Is public speaking more your style? Have you participated in our previous events? Ambassadors can also choose to attend Parkinson’s exercise classes or support groups in your area to give small presentations and distribute flyers about upcoming events, like our annual Vitality Walk or Colorado Community Conference.
For more information about the new Ambassador program or if you are interested in other volunteer opportunities, contact Leesah Barbieri at [email protected].
BECOME AN AMBASSADOR
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Coordinating a support group takes time, energy, organization and commitment. From handling logistics, facilitating meetings, encouraging participation, planning speakers to finding community resources, it is not a one person job.
While providing this resource is an important aspect of our Parkinson’s community, the leader cannot, and should not, do it all. We are encouraging others to volunteer and join a support group as committee members; and ideally avoid burnout in our support group leads. To sustain the life of the group, we are putting a call to action to healthcare professionals, care partners and people with Parkinson’s to help fill some basic responsibilities in groups. Delegating tasks and responsibilities brings group members together while promoting ownership and cohesion. The below committee positions are suggestions provided by the Parkinson’s Foundation’s Support Group Manual. Each group can decide what is right for them.
• Co-leader: Assists in planning and leading the meetings, especially in the leader’s absence.• Telephone Contact: Serve as a point of contact on outreach material.• Secretary: Maintains membership list, prepares and sends meeting announcements.• Hospitality Committee: Greeters, coordinates room/snacks/refreshments.• Publicity/Outreach Coordinator: Contacts local paper, hospitals, clinics, centers, etc. for outreach.• Librarian: Records and maintains books, videos, newsletters and other materials that have been borrowed. • Historian: Keeps a scrapbook of group’s activities, including photographs, newspaper clippings, etc.• Social/Activity Coordinator: Organizes activities for group members outside regular meeting times.
ASSIST A SUPPORT GROUP
LAUGH AS THOUGH YOUR LIFE DEPENDED ON IT!By Bob Wells, Chicken Lips Comedy Theater
“Did you ever wake up, kiss the person next to you and know it’s going to be a good day? I did that yesterday, and apparently, I’m not allowed on that airline again.”
Did that give you a bit of a laugh? Or even a slight smile? If yes, then good things are happening for your body, your mind and your spirit. We all know that there are many physical, mental and social benefits from laughter, whether it’s a gut-bustin’ chortle, a tear-generating guffaw or even a diminutive giggle. Laughter is powerful, and many doctors and researchers agree that laughter improves your mood, relieves anxiety and fear, reduces stress and creates a more positive state of mind.
You probably know that there are agreed-upon physical benefits from laughter: it lowers your blood pressure, increases your heart rate, releases pain-reducing chemicals in your brain, oxygenates your blood, strengthens your immune system, may lower blood sugar – and it’s free!
“Humor is so important that I place it as a daily requirement for a healthy heart, just like diet, exercise and sleep,” says Dr. Michael Miller, professor of Cardiovascular Medicine at the University of Maryland School of Medicine.
“In fact, a good laugh will make you more likely to experience a good night’s sleep and give you more motivation to exercise.” Other benefits are that you’ll feel less pain, you’ll sharpen your brain and you’ll stress less. Cool!
“Kids today don’t know how easy they have it. When I was young, I had to walk nine feet through shag carpet to change the TV channel.”
Did that cause another laugh or smile? Great! As we get older we may get wiser, but we don’t laugh nearly enough. Again with the research: Children laugh 200-300 times a day. While adults laugh about 10 -15 times. Think about how easy it is even for babies to giggle uncontrollably during a repeated bout of “peekaboo,” or for young children to fall down laughing when something silly happens. We can recapture some of that child-like joy if we take the opportunities. After my Parkinson’s diagnosis (and Deep Brain Stimulation procedure, which changed my life for the oh-so-much better), it was through great medical care, a support system of loving friends and family and a steady diet of humor and laughter, that supported my recovery.
What can you do? Oh, so much! Join or form a laugh club. Take a laughter yoga class. Host a game night. Read funny authors. Watch comedy on TV or the internet. Separate yourself from negative people. Concentrate on the good. And celebrate your victories. Laugh as though your life depended on it – because it does!
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HUMOR IS SO IMPORTANT THAT I PLACE IT AS A DAILY REQUIREMENT FOR A HEALTHY HEART, JUST LIKE DIET, EXERCISE AND SLEEP.
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If you’re a healthcare professional or community member looking to assist existing support groups, please contact Erica Wright at [email protected].
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Does the thought of fundraising or asking for a gift make you queasy? Why is that? Many people think that in order to make a difference you have to contribute thousands of dollars. This really isn’t the case.
Building awareness is more important than the dollars raised.
n THINK SIMPLE AND LOCALFind a place you frequent: a restaurant, coffee shop or boutique. Know the manager or owner of an establishment?
Ask the manager, your friend or your supervisor to partner with you and the Parkinson Association to raise awareness in April. A dollar or percent of an item or meal could benefit the Parkinson’s community. Employees who want to wear jeans on Fridays in April, pay $5 to be Casual for a Cause. The opportunities for partnership are endless. M ADVOCATEJoin our Advocacy Committee. We need more voices! As an advocate you’ll be sharing your story via email, phone or in-person visits with local, state and national representatives. From writing letters to editors or congressmen to attending city council meetings, you won’t be alone!
The Association’s Advocacy Committee will provide training, create message scripts and assist with setting up meetings and outlining calls to action. You will decide what level of involvement is comfortable for you.
6 PUSH FOR PROCLAMATIONSAs the second most common neurological disease, Parkinson’s awareness needs to be viewed as state and national importance. Act now by asking your local mayor or city council to declare April to be Parkinson’s Disease Awareness Month with a proclamation.
With over 49 support groups in Colorado, connect with the closest one to you to show the many faces of Parkinson’s and the impact it has in your very own community. The Parkinson Association has a template to share with the community.
GENERATING AWARENESSThink of fundraising as sharing your story and your passion. Keep it simple, and know that every time you share your story with others you’re making a difference.
It’s likely everyone we know, knows someone affected by Parkinson’s. Yet people don’t talk about Parkinson’s the way they talk about breast cancer or Alzheimer’s. The more that people talk about Parkinson’s the better off we will all be.
While the Parkinson’s community may be aware that April is Parkinson’s Disease Awareness Month, many Coloradans remain in the dark and unaware of the 17,000 Coloradans living with Parkinson’s and the significant impact it has on the community. Act now by engaging your community in conversation, awareness and understanding of this disease.
DON’T FORGET TO CONTACT US
Remember to let us know what you are planning. We want to share these stories and events with others. We want to celebrate their success with you. We can help provide you with materials about Parkinson’s and resources in Colorado.
If there is something specific you’re looking for, let us know. We are happy to support you in your efforts.
HAVE A FUNDRAISING IDEA?
Contact Erica Wright at (303) 830-1839 or [email protected] to see how the Parkinson Association of the Rockies can help you develop your event!
IT TAKES A VILLAGE TO
BUILD AWARENESS COMMUNITY EVENTSON OUR CALENDAR
APRIL 7 • Pickleball for Parkinson’s Meadow Creek Tennis Club • Denver
APRIL 28 • PunchathonFort Collins Title Boxing Club • Fort Collins
MAY 19 • Poker for Parkinson’sSwingers Sports Lounge • Lone Tree
JULY 1 • Support Ride to Defeat Parkinson’s Denver Metro Area
JULY 21 • Breaking Par for P.A.R. Walnut Creek Golf Preserve • Westminster
AUGUST 28 • Redneck Ride for Parkinson’sFoothills of Larimer County • Loveland
WANT TO ATTEND OR SUPPORT?
Contact Erica Wright at (303) 830-1839 [email protected] for more information.
“WHAT IF IT’S NOT PARKINSON’S DISEASE?”By Dr. Luisa Solis-Cohen, Colorado Neurodiagnostics
Communication is essential to our sense of self. Up to 89% of people with Parkinson’s will experience a change in their voice or speech; causing frustration and withdrawal. However, it is important to recognize that there is a specialized therapy treatment which can keep your voice strong!
“My voice is strong because I’ve continued to work through this program; I’ve never stopped. Your voice will be like this too if you keep working! There’s room to grow, there’s room to strengthen. Don’t quit.” - LOUD for LIFE participant
LSVT LOUD® is an effective, individualized, one-month speech therapy program supported by over 25 years of research data. There are currently over 80 LSVT LOUD Certified Clinicians in Colorado ready to help people with all stages of Parkinson’s!
Once individuals finish LSVT LOUD treatment, it is important for them to continue to practice prescribed voice exercises to maintain their improvements. LOUD for LIFE voice exercise classes provide an encouraging, motivating way for people to do this with others! These community-based groups meet once a week and include practice of the LSVT LOUD exercises along with conversational practice during a variety of fun activities. New members are welcome to join at any time!
KEEP YOUR VOICE STRONGBy Angela Halpern, MS CCC-SLP, LSVT Global
There are a number of Parkinson’s ‘look alike’ diseases that your neurologist will consider when weighing the diagnosis of Parkinson’s. In the early stages, it can be quite difficult to differentiate Parkinson’s disease from the less common “atypical Parkinsonisms.” Your neurologist will rely on a detailed medical history and physical examination to help differentiate among these options. In fact, even a DaT (dopamine transporter) scan will offer little help in such decision making. Here, you will find more information on the atypical Parkinsonisms.
Progressive supranuclear palsy (PSP) is suspected when there is early imbalance and unexplained falls in addition to other Parkinsonism symptoms. The name of this condition refers to the difficulty moving one’s eyes in the vertical direction, a feature often seen later in the disease course. Other symptoms include personality changes and forgetfulness. Individuals with PSP may have a less robust response to levodopa. Often a more rapid disease progression is experienced.
Multiple system atrophy (MSA) refers to a subgroup of Parkinsonisms that affects numerous body systems early in the disease and often leads to a more rapid disease progression. In some individuals, the autonomic nervous system is affected, leading to early orthostatic hypotension, erectile dysfunction and bladder habit changes. Other symptoms can include impaired speech, troubles swallowing and difficulty breathing. Treatment is symptom-specific as levodopa provides little benefit.
Lewy bodies dementia (LBD) is the second most common cause of dementia in the elderly. While a person may have motor symptoms similar to Parkinson’s disease, the hallmarks of this condition are: difficulty with thinking, fluctuating level of alertness and visual hallucinations. Typically the signs of dementia appear before or within the first year of Parkinsonian
motor symptoms. Treatment is focused on cognition and hallucinations, but often includes low doses of levodopa.
Corticobasal degeneration (CBD) is the least common of the atypical Parkinsonisms. Often a person will describe difficulty with voluntary control of one side of the body; there can be involuntary postures or jerking movements of that side. Speech is often affected.
Vascular parkinsonism is considered in individuals with stroke risk factors; such as high blood pressure, high cholesterol and diabetes. This condition arises after multiple small strokes in the basal ganglia, one of the brain regions implicated in Parkinson’s disease. Gait difficulties and lower extremity stiffness are often the primary complaints. Symptoms can appear abruptly and there can be “step-wise” progression with periods of worsening followed by plateaus. This may or may not respond to levodopa, the gold standard medication used in Parkinson’s disease.
Drug-induced parkinsonism can arise when dopamine levels in the brain are altered by certain drugs such as anti-nausea medications, antipsychotics or mood stabilizers; some calcium channel blockers and stimulants such as amphetamines and cocaine. Symptoms often improve if the medication is discontinued, but this can take time.
Normal pressure hydrocephalus (NPH) is characterized by difficulty walking, cognitive impairment and loss of bladder control. It results from excess cerebrospinal fluid surrounding the brain and diagnosis involves both brain imaging and examinations before and after a spinal tap. Treatment involves neurosurgical placement of a shunt to remove excess cerebrospinal fluid.
LOUD for LIFE Class Members in Costume for a “Solve the Mystery” Event 11
ALREADY AN LSVT LOUD GRADUATE?
Join our LOUD for LIFE classes in Arvada & Centennial to keep your voice strong and loud! See page 5 for more information. For more information or to register call (303) 534-0324.
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WALK THE WALK THAT CONNECTS COMMUNITIES AND ENHANCES LIVES...WALK THE VITALITY WALK!
Join us for our Sweet 16th Annual Walk on Sunday, June 38:00am Registration Begins • 9:00am Walk Start • 10:00am Resource Fair
Wash Park, Denver • Sandstone Ranch, Longmont • Choose to Snooze Registration $30/adult • $10/child (ages 5-14) • FREE/child (ages 0-4)
For more info & to register visit www.ParkinsonRockies.org/VitalityWalk
SPECIAL THANKS
Whether you walk the Vitality Walk or Choose to Snooze, join more than 1,600 individuals who are making a difference by increasing awareness of Parkinson’s disease and raising critical funds to support the
programs and services provided by the Parkinson Association of the Rockies. Engage your time, energy and support to help connect our communities and enhance the lives of those
living with Parkinson’s. People of all ages and their dogs are welcome.
JOIN THE 20% CLUB The Parkinson Association is committed to increasing programs and services by another 20% in 2018. Join the 20% Club by raising
$200; as an incentive, you’ll receive a customized shirt.
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