NEWSLETTER for • Duopa • East County • Pacific Beach • Pt. Loma • Speakers’ Series Chapters Edition 22 SD CENTRAL COUNTY PARKINSON’S SUPPORT GROUP October 2020 https://sdccpsg.org/ East County Parkinson’s Support Group Partners with San Diego Central County Support Group as a New Chapter! by Lorenzo Higley, MSW, Co-Convenor - East County Parkinson’s Support Group Members, at September’s East County Parkinson’s Support Group (ECPSG) monthly Zoom meeting, discussed strategies to address the impact of the pandemic upon both PwP’s and Care Partners. The pandemic has reduced the benefits of our geographic identification and eliminated our in-person meetings. Resources, beyond what our geographic community-specific support group is able to provide, could benefit members on-line. Thinking outside our East County geographic box, we concluded that a partnership with San Diego Central County PSG (SDCCPSG) should be explored to meet these challenges. We have approached President Nancy Floodberg and the SDCCPSG Board of Directors with our request. At their September Board of Directors meeting, they graciously agreed to partner with us and list our ECPSG as a SDCCPSG Chapter on their website and in their materials. We plan to share ECPSG members’ e-mail addresses with the SDCCPSG mailing list. Members who do not wish their e-mail shared should e-mail Lorenzo at [email protected]with a subject line of “Do not share” to be removed from that list. Benefits include easy access to the SDCCPSG monthly newsletter and the comprehensive resources on the SDCCPSG website at www.sdccpsg.org for members. Plus, our East County monthly meetings will be listed on their calendar of events and on the forthcoming Parkinson’s Association calendar. Members who complete the Contact Information Form that accompanies the monthly newsletter will be able to identify their membership in our ECPSG and allow us to update our membership list. Once we’re able to return to monthly in-person meetings, we’ll evaluate the benefits and challenges of this partnership. Until then, we very much appreciate the welcome we have received from the SDCCPSG Board of Directors and look forward to working together to support members. Parkinson’s Association Debuts Online Support Group Calendar Interested in learning about Parkinson’s support groups and events available to you throughout San Diego? You can now view them all on the Parkinson’s Association’s county-wide Support Group Calendar. To view, go to: https://parkinsonsassociation.org/support-groups-resources-2018/ The Midas Touch Are you buying through Amazon? It seems we all are using Amazon more these days. You can make those purchases generate donations for San Diego Central County Parkinson’s Support Group. Amazon will donate cash to our non-profit if you buy through Amazon Smile. There’s no charge to you; the donation comes from Amazon’s piggy bank. All you need to do is sign up, once, on the Amazon Smile web page. That’s where you tell Amazon where you want their donation to go; hopefully to the San Diego Central County Parkinson’s Support Group, right? Take a minute now to start the Amazon Smile donations, and we’ll all benefit from your assistance on this program. You can click on the link below to get started. Thank you! https://smile.amazon.com/gp/chpf/homepage?orig=%2Fref=smi_se_saas_lsmi_smi 1 Inside This Issue • Monthly Schedule of Support Groups & Exercise Classes Page 2-3 • In Focus: Online Resources Page 4-5 • Parkinson’s Life Hacks • Good Reads • PD Community Contact Info • Board Member Contact Info Page 6 • Pictures & Postings Page 7 • • How to Choose a Mask Page 8 • October Events Calendar Page 9-10
Transcript
NEWSLETTER for • Duopa • East County • Pacific Beach • Pt. Loma • Speakers’ Series Chapters
Edition 22
SD CENTRAL COUNTY PARKINSON’S SUPPORT GROUP
October 2020 https://sdccpsg.org/
East County Parkinson’s Support Group Partners with San Diego Central County Support Group as a New Chapter!
by Lorenzo Higley, MSW, Co-Convenor - East County Parkinson’s Support Group
Members, at September’s East County Parkinson’s Support Group (ECPSG) monthly Zoom meeting, discussed strategies to address the impact of the pandemic upon both PwP’s and Care Partners. The pandemic has reduced the benefits of our geographic identification and eliminated our in-person meetings. Resources, beyond what our geographic community-specific support group is able to provide, could benefit members on-line. Thinking outside our East County geographic box, we concluded that a partnership with San Diego Central County PSG (SDCCPSG) should be explored to meet these challenges. We have approached President Nancy Floodberg and the SDCCPSG Board of Directors with our request. At their September Board of Directors meeting, they graciously agreed to partner with us and list our ECPSG as a SDCCPSG Chapter on their website and in their materials.
We plan to share ECPSG members’ e-mail addresses with the SDCCPSG mailing list. Members who do not wish their e-mail shared should e-mail Lorenzo at [email protected] with a subject line of “Do not share” to be removed from that list. Benefits include easy access to the SDCCPSG monthly newsletter and the comprehensive resources on the SDCCPSG website at www.sdccpsg.org for members. Plus, our East County monthly meetings will be listed on their calendar of events and on the forthcoming Parkinson’s Association calendar. Members who complete the Contact Information Form that accompanies the monthly newsletter will be able to identify their membership in our ECPSG and allow us to update our membership list.
Once we’re able to return to monthly in-person meetings, we’ll evaluate the benefits and challenges of this partnership. Until then, we very much appreciate the welcome we have received from the SDCCPSG Board of Directors and look forward to working together to support members.
Parkinson’s Association Debuts Online Support Group Calendar Interested in learning about Parkinson’s support groups and events available to you throughout San Diego? You can now view them all on the Parkinson’s Association’s county-wide Support Group Calendar. To view, go to:
The Midas Touch Are you buying through Amazon? It seems we all are using Amazon more these days. You can make those purchases generate donations for San Diego Central County Parkinson’s Support Group. Amazon will donate cash to our non-profit if you buy through Amazon Smile. There’s no charge to you; the donation comes from Amazon’s piggy
bank. All you need to do is sign up, once, on the Amazon Smile web page. That’s where you tell Amazon where you want their donation to go; hopefully to the San Diego Central County Parkinson’s Support Group, right? Take a minute now to start the Amazon Smile donations, and we’ll all benefit from your assistance on this program. You can click on the link below to get started. Thank you! https://smile.amazon.com/gp/chpf/homepage?orig=%2Fref=smi_se_saas_lsmi_smi
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Inside This Issue • Monthly Schedule of Support
Groups & Exercise Classes Page 2-3
• In Focus: Online Resources Page 4-5 • Parkinson’s Life Hacks • Good Reads • PD Community Contact Info • Board Member Contact Info
Page 6 • Pictures & Postings
Page 7 • • How to Choose a Mask
Page 8
• October Events Calendar Page 9-10
SUPPORT GROUP CHAPTER MEETINGS
SDCCPSG Sponsored held online via
ZOOM Phone & Video Conferencing
Our support groups are for people with Parkinson’s, their care partner, family and friends to meet, share challenges, strategies and successes, and to learn how to live well with Parkinson’s.
EAST COUNTY (SDCCPSG’s newest Chapter) Wednesday, October 14th 6:00 – 7:30pm (Second Wednesday of each month) Via ZOOM Phone & Video Conferencing
2. Phone 1.669.900.9128,,6471974752# SPEAKERS’ SERIES Wednesday, October 14th 3:00 – 4:30pm (Second Wednesday of each month) Speaker: Sherrie Gould, NP Topic: DUOPA – Continuing the Journey Via ZOOM Phone & Video Conferencing
2. Phone 1.669.900.6833,,83008945719# PACIFIC BEACH Wednesday, October 21st 1 – 2:30pm (Third Wednesday of each month) Speaker: Nancy Floodberg, MS Topic: Creating a Health History Document Via ZOOM Phone & Video Conferencing
PT. LOMA Monday, October 26th 10:00 – 11:30am (Fourth Monday of each month) Speaker: John Cooney, BDR Topic: When & How to Use Home Healthcare Via ZOOM Phone & Video Conferencing 1. Computer, laptop, tablet, smart phone
DO YOU DUOPA? Saturday, November 28th 2:00 – 3:30pm (Fourth Saturday of odd months) For people with Parkinson’s, receiving or considering Duopa Therapy, and their care partners. Via ZOOM Phone & Video Conferencing 1. Computer, laptop, tablet, smart phone
HOW TO ZOOM! All our support group chapters meet online, offering ZOOM phone and video conferencing. For written instructions on how to join an online meeting, please go to: https://www.sdccpsg.org/resources/Zoom-Video-Conferencing-100120.pdf For one-on-one instruction on joining an online meeting, please email Board member, Patsy Manning, at: mailto:mailto:[email protected]
For more information on additional Support Groups throughout San Diego County, please visit the
Parkinson' Association of San Diego’s website: https://parkinsonsassociation.org/support-groups-resources-2018/. There you will find the Support Group Calendar from which you can select one or more support groups by location, and view their scheduled, monthly meetings, currently being held online via Zoom phone and video conferencing.
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PHYSICAL & VOCAL EXERCISE CLASSES
held online via ZOOM Phone & Video Conferencing
The exercise classes offered below are designed to help people with Parkinson’s, as well as their care partners, stay fit and live well.
PHYSICAL
110 DAILY GRIND Rock Steady Boxing/South Shore, MA Coach, Brett Miller, PT, offers a great start to your day with the following Parkinson’s workout videos. Free The Benefits of Stretching: https://www.youtube.com/watch?v=XpMzbg4Idrg Drumming Thursday (Modified & Non-Modified): https://www.youtube.com/watch?v=SxzHd7W8Jxw&list=PLiWzYySWsBOGMFkq4DIC2v26MVvZpVsQn&index=47 AARP Fitness experts share 10-minute workouts you can do in your living room. Free https://www.aarp.org/health/healthy-living/info-2020/exercising-at-home.html YMCA YMCA programs available online for everyone. Free https://ymca360.org/ COACH ME STRONG A one-on-one exercise coaching program for people with Parkinson’s, other neurological disorders or who are just getting a little older. Fee charged https://www.coachmestrong.com/ .
DANCE FOR PD This New York based program is providing free, unlimited access to regularly scheduled live Dance for PD classes, as well as their library of archived classes. Free https://danceforparkinsons.org/resources/dance-at-home JUAN CARLOS ORGANIZATION San Diego fitness instructor, Rock Steady Boxing coach, and JCO founder, Liz Garces, offers a series of follow along videos ranging from her Parkinson’s Network exercise routine to Zumba and dance workouts. Free http://www.jcorg.org/video-exercise.html
ROCK STEADY BOXING-DOWNTOWN Monday – Friday, 10:30 – 11:45am Coach Mike Reeder, of Rock Steady Boxing Downtown, offers his popular boxing class, Monday through Friday via Zoom online video conferencing. To participate, contact Mike. Fee charged. [email protected]
SMARTXPD Patrick LoSasso, CSCS, offers 2 online exercise classes. Mon, Wed, Fri, 10:30 – 11:30am: Regular Class Thursday 12:00 – 1:00pm: Gentle Chair Class To participate and receive instructions on how to join via Zoom, email Patrick at: http://[email protected]. Donation of $5-$10/class appreciated, but not a requirement to join. Free Sample Gentle Chair Class: https://www.youtube.com/watch?v=9Wgf95GpTpo&t=483s UCSD Virtual Parkinson’s & Related Disorders Exercise Class First and Third Tuesdays – 11:00A-12:00pm Registration is required. Free https://www.eventbrite.com/e/ucsd-parkinsons-related-disorders-exercise-class-registration-119644581163 STANFORD PARKINSON’S COMMUNITY OUTREACH For a collection of Stanford’s favorite Parkinson’s exercise videos available online, in DVD or VHS format, or as a downloadable pamphlet or purchasable book. Free http://parkinsons.stanford.edu/exercise_videos.html
VOCAL
AUDABILITY – Music Therapy Mondays, 11am – 12pm: Voice Wednesdays, 11am – 12pm: Harmonica Fridays, 2 – 3pm: Chair Yoga Classes held via separate Zoom links emailed to you weekly. Fee charged. Register at: https://forms.gle/4GGFJZdzR2M15CAt8 Contact Lindsay Zehren at: [email protected]
GET LOUD! STAY LOUD! Online voice and speech exercises for individuals with Parkinson’s Disease. Fee charged. For more information, go to: https://getloudstayloud.mn.co/ SONGSHINE – Vocal Maintenance Program Online vocal music and creative drama classes are being offered to help you communicate more easily and clearly. Click on the link below for their “New Video Series”: Free http://www.songshineforparkinsons.org/new-video-series TREMBLE CLEFS – Therapeutic Singing In lieu of in-person rehearsals, Tremble Clefs choruses meet twice weekly (Wed – 10am, Thurs – 1:00am) at Zoom online rehearsals. Free For information, email: [email protected] or call 619.363.0814.
Please be sure to consult with your physician before starting any form of exercise program. For additional information on exercise classes throughout San Diego County, please visit the
Parkinson's Association of San Diego’s website: https://parkinsonsassociation.org/support-groups-resources-2018/.
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IN-FOCUS: RESOURCE LIBRARY
In-Focus continues with our Resource Library compiling new local and online resources by category. (Click on the link to be connected. Have a resource to share? Please email it to mailto:[email protected])
COVID-19 Information The World Health Organization https://www.who.int/emergencies/diseases/novel-coronavirus-2019
Worldometer, a reference website that provides counters and real time statistics for diverse topics. https://www.worldometers.info/coronavirus/
Centers for Disease Control and Prevention https://www.cdc.gov/coronavirus/2019-ncov/index.html
What to Expect from a Contact Tracing Call https://www.cdc.gov/coronavirus/2019-ncov/daily-life-coping/contact-tracing.html?utm_campaign=20200819_cvd_prv_frd_gal&utm_content=english&utm_medium=email&utm_source=govdelivery
Johns Hopkins Coronavirus Resource Center They provide up-to-date worldwide data on a daily basis. https://coronavierus/hu.edu/
The New York Times: A Quick Coronavirus Risk Assessment https://www.nytimes.com/interactive/2020/06/03/burst/coronavirus-risk-gym-surfaces-bike.html?shared=1
California Department of Health https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/Immunization/ncov2019.aspx
San Diego County Health & Human Services Agency https://www.sandiegocounty.gov/content/sdc/hhsa/programs/phs/community_epidemiology/dc/2019-nCoV.html
San Diego County Reports Single-Day Record of 497 New COVID-19 Record (06/29/20) https://www.kpbs.org/news/2020/jun/29/san-dieg-single-day-record-coronavirus-cases/
San Diego County Public Health Hotel Temporary lodging to address COVID-19: 858.715.2350.
City of San Diego https://www.sandiego.gov/coronavirus
How to Get a COVID Test Call your Primary Care Provider for a testing referral or contact one of the following sites for a list of testing locations and appointment options:
San Diego County Free https://www.arcgis.com/apps/Nearby/index.html?appid=f3e3c0f175fd4ee782b781833d7bb0fb&distance=30&find=92040
Parkinson’s & COVID-19 National Davis Phinney Foundation – COVID-19 Resources. https://www.davisphinneyfoundation.org/blog/covid-19-resources/
Michael J. Fox Foundation. Living in the Moment When the Moment is Unprecedented. https://www.michaeljfox.org/podcast/podcast-living-moment-when-moment-unprecedented-webinar
Parkinson’s Foundation. PD Health @ Home. https://www.parkinson.org/understanding-parkinsons/coronavirus/PD-health-at-home
Parkinson’s Movement & Disorder Alliance https://www.pmdalliance.org/covid-19/
Local Parkinson’s Association of San Diego. View county support group calendar, weekly updates and archived webinars, as well as their virtual Good Start Program. https://parkinsonsassociation.org/
State Support Friendship Line California. While staying at home is being done to keep safe, it may also lead to feeling lonely and isolated. Older Californians and their caregivers can connect with a friendly, listening ear today by calling the Friendship Line California at: 888.670.1360.
The DMV Virtual Office. You can now conduct a number of transactions online, including: Temporary Driver License Extension, Submit Medical Examination Report, Vehicle Registration Renewal, Title Transfer, Duplicate Title, and Vehicle Salesperson Renewal/Reinstatement. https://virtual.dmv.ca.gov/
Local Support Ride Well to Age Well Guide. A resource guide to transportation services for San Diego County residents during COVID-19. To download, click here: https://www.sandiegocounty.gov/content/dam/sdc/hhsa/programs/ais/AISResources/Ride Well to Age Well Transportation Guide_COVID-19 Special Edition.pdf
FACT. Facilitating Access to Coordinated Transportation is offering Free transportation for essential needs for San Diego residents until further notice. Seniors, persons with disabilities, students, veterans and other residents who need assistance may call FACT between 8A–3P, Monday through Friday, to request free transportation in San Diego County. 888.924.3228.
IN-FOCUS RESOURCE LIBRARY (cont’d)
Arts & Culture Road Scholar. Quintessential Van Gogh. Join art historian, Dr. Matthew Palczynski, to explore Van Gogh’s most celebrated works, set within the context of Impressionism and its offspring, the budding Post-Impressionism movement. Learn why Van Gogh’s color is always about setting the mood. https://www.youtube.com/watch?v=WnaF_cfMvzU&feature=youtu.be&cm_ven=Email&cm_cat=ADI&cm_pla=OTHER&cm_ite=WWM&[email protected]&[email protected]&e_id_s=d7530ddfbe68623312e0af58166f77d808ea8274ec224c7ab83cb87ca283dabc Music Boys’ Choir Dagilélis. The Lion Sleeps Tonight. https://www.youtube.com/watch?v=HOIzRdDo_3I&feature=youtu.be Musical Gumbo: Jazz and the Black Experience. https://www.youtube.com/watch?v=3g7Jd2K1p8g Education Brain & Life – Neurology for Everyday Living: Academy of Neurology. Published 6 times a year (4 times in Spanish), this virtual and print magazine is an excellent resource for those living with a neurological disorder.
To Subscribe: https://www.b2bmediaportal.com/dynamicregister/register.aspx?fid=NOWF&KEY=BLWEB
Spotlight on Parkinson’s: https://www.brainandlife.org/disorders-a-z/parkinsons-disease/?utm_source=Informz&utm_medium=Email&utm_campaign=20%20BL&utm_content=Parkinsons_Spotlight_3 CNN: The Good Stuff: A newsletter for the good in life. https://www.cnn.com/specials/us/the-good-stuff?source=nl_footer&utm_term=15999121323588ce93b5dd5eb&utm_source=The+Good+Stuff+09%2F12%2F20&utm_medium=email&utm_campaign=242711_1599912132360&bt_ee=VkRUKnog2DxUTxGx740fxH0caW2DTBOCt7FV372e1rabTmeNypiLi8Ra6HOE2aPN&bt_ts=1599912132360 SDCCPSG Speakers’ Series: The Importance of a Urologist in the Life of a Person with Parkinson’s. https://www.youtube.com/watch?v=gEfv3gDOfDQ&feature=youtu.be Medicare: Open Enrollment. Medicare Open Enrollment runs from October 15 to December 7, but you can get an
early look at next year’s health plans and prescription drug plans starting on October 1. https://www.medicare.gov/blog/medicare-open-enrollment-set-a-reminder?utm_campaign=20200925_oep_res_gsm&utm_content=english&utm_medium=email&utm_source=govdelivery Travel DayTripper Tours: Filmore & Western Virtual Rail Journey. Ride the rails through Southern California’s Heritage Valley on this virtual train excursion from Filmore to Santa Paula. Saturday, October 17th at 1100am. $10. https://www.daytrippertours.com/online-experiences/fillmore/ Eventbrite: Discover San Diego’s Seaport Village & Marina Park: Virtual Walking Tour. Learn the fascinating history and little-known facts about San Diego’s Seaport Village, Marina Park and the Symphony’s new Band Shell. Sunday, October 11th at 11:00am. $10. https://www.eventbrite.com/e/discover-san-diegos-seaport-village-marina-park-virtual-walking-tour-tickets-121236891807 Road Scholar. Venice: 1,000 Years of Venice History. https://www.youtube.com/watch?v=HC9xwSiwzdQ&feature=youtu.be&cm_ven=Email&cm_cat=ADI&cm_pla=OTHER&cm_ite=APV&[email protected]&[email protected]&e_id_s=d7530ddfbe68623312e0af58166f77d808ea8274ec224c7ab83cb87ca283dabc Self-Care 2 Symptoms Will Help you Tell Coronavirus from the Flu this Fall. https://bgr.com/2020/09/07/coronavirus-symptoms-vs-flu-differences-loss-of-smell-trouble-breathing/
10 Tips if You are Struggling Through COVID-19. https://www.cheservices.com/assets/general/10-Tips-if-you-are-struggling-with-COVID-19.pdf
Compassion & Choices: COVID-19 Toolkit – End of Life Care During the COVID-19 Pandemic. https://compassionandchoices.org/end-of-life-planning/covid-19-toolkit/ How to Strengthen Your Lungs to Fight COVID. https://www.aarp.org/health/conditions-treatments/info-2020/lung-health-covid19.html?cmp=SNO-ICM-FB-HLTH&socialid=3739625393 The Complete Guide to Senior Care Planning. https://www.care.com/c/guides/senior-care/senior-care-planning/
Please visit our website: www.SDCCPSG.org. There you will find an overview of our Board and support groups, as well as both local and national resources. In addition, the site features video and PowerPoint archives from our Speakers’ Series,
as well as previous Newsletters. We update it often and welcome your feedback ([email protected]).
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SDCCPSG BOARD OF DIRECTORS PARKINSON’S LIFE HACKS Life Hacks: /’lif,haks/ • Tools or techniques that make some aspect of one’s life easier or more efficient.
Blood Pressure Monitor: Accurately monitor your blood pressure and heart rate. Typically obtained as part of your in-person medical visit, having a Blood Pressure Monitor for home use provides you accurate, real time information on your health, as well as your provider when meeting via a telemedicine conference. Several models are available at Amazon: https://smile.amazon.com/2020-Blood-Pressure-Monitor-LAZLE/dp/B07WCQVV71/ref=sr_1_4?crid=37I9OUYT1MV1J&dchild=1&keywords=blood+pressure+monitor&qid=1601194816&sprefix=blood,aps,210&sr=8-4
To submit a Parkinson’s Life Hack, please send an email to:
Living with Parkinson’s Disease: A Complete Guide for Patients and Caregivers by Michael S. Okun, MD, Irene A. Malaty, MD, and Wissam Deeb, MD.
PARKINSON’S COMMUNITY RESOURCES Parkinson’s Association of San Diego Executive Director: Chris Buscher mailto:[email protected] https://parkinsonsassociation.org/
FACT Transportation: 888.924.3228 Monday – Friday 7:30 AM to 8:00 PM (8:30 PM pick up for SDCCPSG Speakers’ Series). Call 72 hrs ahead to schedule transportation to/from 1 of 3 approved PD-related activities (Neurology appt, Support Group or Parkinson’s Assoc.-sponsored event). Mobility chairs, service animals and care partners accommodated. Donations welcome and most appreciated. Cost: Free
East County Parkinson’s Support Group Support Group Convener: Lorenzo Higley [email protected] https://sdccpsg.org/ North County Parkinson’s Support Group Board Pres., Support Group Leader: Paul Dawson [email protected] http://www.ncpsg.org/
UCSD Parkinson’s Network Support Group Coordinator: David Higgins mailto:[email protected] http://www.support4pd.org/
619.857.6638 Vice-President – Support Group Leader Jim Paterniti [email protected] 858.203.3232 Member-at-Large – Support Group Leader Lorenzo Higley [email protected]
BOARD MEETING Monday, October 12th, 10:00am – 11:30am Second Monday of each month Via Zoom Online & Telephone Conferencing Online: https://us02web.zoom.us/j/408133800 Phone: +1.669.900.6833,,408133800#
County of San Diego Resource Line Available 24/7 – 211
County of San Diego Access & Crisis Line Available 24/7 – 888.724.7240
Nationwide Suicide Hotline Available 24/7 – 988
SDCCPSG provides information to keep you informed of the latest findings in research, new treatments, and living well with Parkinson’s. Although we have speakers on a variety of topics, we do not officially endorse any of them. Our motto is
“maintain close communication with your neurologist/movement disorder specialist, and exercise, exercise, exercise!“
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PICTURES & POSTINGS FROM OUR PARKINSON’S COMMUNITY (Have a picture, poem or positive experience to share? Please send it to [email protected])
An update from Kagen – age 15
(our Speakers’ Series Greeter)
Kagen’s Mother’s and Aunt’s childhood playhouse he turned into his bedroom last year, when he out-grew
the room he shared with his brother. Not unlike Alice in Wonderland, with arms and legs
popping out doors and windows, Kagen quickly found himself outgrowing the playhouse, too!
Kagen, his brother, Ryland, and their Dad worked Although nearly 6 feet in height, and still growing, all summer designing and building “the Studio”, Kagen should have no problem fitting into his new Kagen’s new bedroom. retreat, with its 12-foot ceilings.
