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Helping Others

Helping Others

In Memory of Pamela Gusland

I write this blog in the memory of Pam Gusland, a local therapist I saw for many years who helped me through tough times when Marcia and Cindy struggled with Huntington’s disease and the stress of living with John’s unknown gene status for Huntington’s disease wore me down.  http://www.hdsa.org 

Last year, after my book was complete and I began selling it, I looked up Pam because I wanted to give her a copy since she had suggested many times over the years to write my feelings down because writing had a healing quality.  I wanted her to know I had taken her advice and through the creative process of writing and creating a book, I had healed. Thank you Pam for the support you gave me.

It had been eight years since I’d seen Pam, 2009, so I stopped by her office and found she was no longer there.  I began searching online and much to my disbelief, she had died of breast cancer in April 2017.

Her obituary in the local Auburn Journal newspaper pays a wonderful tribute to her:

After a long battle with metastatic breast cancer, Dr. Gusland died on April 5, 2017 at the age of 69. She spent her final days at her peaceful home in the Sierra Foothills. Dr. Gusland (Pam) was innately compassionate. She dedicated her life to a career of helping others. After several years of teaching special education, Pam transitioned into counseling with a Ph.D. in Clinical Psychology from The University of Denver. For over thirty years, she helped hundreds of individuals transform their lives through her private practice in Southern California and later in Northern California, where she served the Auburn community for the past twenty years.   http://www.legacy.com/obituaries/auburnjournal/obituary.aspx?n=pamela-faith-gusland&pid=186158505  

We Can Never Lose HOPE…………

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

John & Therese donated $9,015.00 to Huntington’s Disease Society of America last December which was the profit from book sales since publishing in April 2017. 

 

 

 

Helping Others

Sacramento Huntington’s Disease (HD) Support Group

People have asked me why I attend the monthly HD support group in Sacramento when I currently do not have anyone affected by the disease?  Yes, my three sisters-in-law are gone, stolen from us by the insidious HD, but they are not forgotten.

I take part in the meetings in honor of Lora, Marcia and Cindy’s struggle with HD.  For over 25 years, John and I lovingly cared for and helped his three sisters through the disease process, without a support system, as neither a support group nor HDSA Center of Excellence existed in the late 1980’s and 1990’s in the Sacramento area.

Being present for those struggling with HD, listening, acknowledging their experience, pain, fears and doubts, and offering advice, gives me peace.  I will always have compassion in my heart for HD families, and have a need to help in some small way, because I know what they are going through.  If I could have talked with a HD family that was going through what John and I were experiencing, it would have been life changing for me.

If you’re considering joining a support group, this article might be beneficial to you:      http://davidsusman.com/2015/04/23/9-benefits-of-support-groups/  

Click on link for a larger picture of the list of support groups in Northern California:   https://www.ucdmc.ucdavis.edu/huntingtons/files/support_groups.pdf  

HDSA also offers free ONLINE SUPPORT GROUP MEETINGS.  To register please go to:   http://hdsa.org/osg/

We Can Never Lose HOPE………………

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from books sold in the U.S. are being donated to HDSA.  John and Therese donated $9,015.00 last December which was the profits from books sold since Therese published in April 2017.

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Helping Others

TEVA Pharmaceutical Company

While John and I were on my book tour, promoting Watching Their Dance, and attending HDSA Team HOPE Walks, my table usually ended up next to the TEVA Pharmaceutical representatives. I was impressed with their marketing material on Austedo, the new treatment for Huntington’s disease patients who exhibit chorea, and their personalized support to patients who begin an Austedo drug regiment.    http://www.tevapharm.com/        

I compliment the TEVA representatives on their professionalism and sincere efforts to individually speak to HD families at these events.

The Teva Rep’s I met are:  (left to right) Lori Sorge and her coworker (I’m sorry I do not remember his name)-Wisconsin, Michael Morreale & Maurice Mulcahy-Ohio, Dianne Knapper-Michigan, and Lori Sorge again since I saw her at two events!  I also met a nurse, Jason, who held an inservice on Austedo after the Wisconsin walk, a nurse and rep at the Nebraska walk and a nurse at the Kansas walk. Great meeting you all!

      

We can never lose HOPE………………Therese

100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to Huntington’s disease organizations around the world.  To purchase the book, go to Therese’s website: http://www.theresecrutchermarin.com and

Amazon    B&N     Kindle    Kobo      Nook 

and iBooks.

HDSA, Helping Others

Resources Available to Huntington’s Disease Families

Today, folks dealing with Huntington’s disease have many resources available; more than John and I did in the 1980’s and 1990’s.  Don’t get me wrong, HD is still the cruelest disease on the planet, but HD families and their loved ones are not as isolated as we felt.  Families have access to social workers, neurologists, HD clinics, information, support groups, conventions, Facebook Support Groups, webinars, and have opportunities to participate in studies and clinical trials to help research move forward. In the area of care, Huntington’s Disease Society of America has created a national network of resources and referrals that are unmatched by any other HD organization.    http://www.hdsa.org

http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/    

https://en.hdbuzz.net/244

As I’ve traveled the Midwest this summer and attended HD Support Groups, Hope Walks, conventions, education days, I have seen the positive affect the availability of support has on HD families. Connecting with people who are living the same life as you is helpful and comforting.

In the 1980’s, when two of my sisters-in-law began showing symptoms, John and I felt alone, isolated without a support system.  Lora, John’s oldest sister, showed psychiatric symptoms around 1984 and drank herself to death by 1989. Marcia was diagnosed by neurologists at UC San Francisco Medical Center in 1986 and Cindy exhibited symptoms in 1992.  There were no support groups, Hope Walks or even a neurologist in the Sacramento California area who specialized in Huntington’s disease.

Basically, John and I learned as each sister showed symptoms, did the best we could and held on to each other for support. I also had a counselor for many years who helped me through the anticipatory grief I experienced for 25 years as each sister was diagnosed and Huntington’s disease slowly stole them from us.

Therese remembers her sisters-in-law in her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. 100% of the proceeds from her book is being donated to HDSA in the U.S. and HD organizations around the world.

Go to Therese’s author website http://www.theresecrutchermarin.com or Amazon, B&N, iBooks to purchase the book.

Helping Others

Shana Verstegen and HD Workouts

Shana Verstegen is the former president of the HDSA Wisconsin chapter (2007-2013) and has served as a Huntington’s Disease Society of America national spokesperson since 2002. She received her bachelor’s degree in kinesiology and exercise science at the University of Wisconsin in 2002, and went on to earn the Log Rolling World Champion title in 2006, 2007, 2008, and 2012, and the Boom Run World Championship in 2008 and 2009.

Verstegen currently travels the country as a trainer for the American Council on Exercise – San Diego, TRX Training San Francisco, and Supreme Health and Fitness based in Madison, Wisconsin. She has helped raise public awareness about HD by making numerous television appearances on programs including the Tonight Show with Jay Leno, the Wayne Brady Show, Girls Behaving Badly (Oxygen Network), and a special ESPN feature about Huntington’s disease. In print she has been featured in venues including Oxygen, Women’s Physique World, Muscle & Fitness, Wisconsin Woman, and Newsweek magazine. While she says she has many things to be proud of, her work with HDSA in honor of her mother will always top that list. Her mother, Debby Martin, died from complications of Huntington’s disease in March 2013. Verstegen says that watching her mother lose her ability to move independently inspired her to live every day to the fullest with a focus on movement—from being the first female pole vaulter at the University of Wisconsin to winning a half dozen lumberjack titles. Verstegen is passionate about raising awareness toward finding a cure for Huntington’s disease, and fundraising to make that research and cure possible.

For more of Shana’s video’s on HD workouts go to:    http://hdsa.org/hd-workout-tips/    

Shana and her husband, Peter, are hosting three HDSA Team Hope Run/Walks in 2017.

Fox Valley August 13 https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1154   

Eau Claire August 19   https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1143  

Madison July 1  https://hdsa.donordrive.com/index.cfm?  fuseaction=donorDrive.event&eventID=1258

Therese’s book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s can be purchased on:   http://www.theresecrutchermarin.com  

We can never lose HOPE………….Therese

 

 

Helping Others

An Interview with Kate Miner, actress, musician & HD advocate

Kate Miner, who wrote a book jacket comment for my book cover, was gracious enough to allow me to interview her.  Of course, some of the questions are about her family’s experience with Huntington’s disease but others are about her life as an actress and musician. 

Q 1) Tell us how you got started in acting and about your Indie Rock Band, Miner.  I started doing theater in high school and was approached by a talent scout who saw a performance of Guy and Dolls that I was in. A few years later I moved to Los Angeles for college and started auditioning all the time. I was fortunate enough for my passion to turn into a career.

I didn’t start playing music until 2012 when my husband was working on a new project that would turn into Miner. He needed female vocals and knew I’d done musical theater growing up so he had me sing on it. The songs he released online went viral and he was like “how quick can you learn to play mandolin?” I found I really enjoyed playing music and songwriting. It was a surprise to both of us how naturally it all came together and how much we enjoyed writing together.

Q 2) When did you discover that your family was affected by HD?    In 2014 while I was on a national tour with Miner my parents called me and told me my aunt had HD. I didn’t really understand what that meant for our family until we got off the phone and I started researching online.

Q 3) Did you take a test for HD?   I did. I’m negative. Both of my sisters are positive. We got our results one day apart. If I could trade places with either one of them I would. They are the best people I know in this world and my best friends.

Q 4) Tell us about your involvement in Freeze HD and other ways you are trying to educate people about the disease.  We decided to host a fundraiser as a sort of coming out party to our family and friends many of whom, like us, had no idea what HD was before it affected our family. We rented out a fun music venue in Echo Park called The Bootleg Theater and proceeded to raise over 200k. The event brought out big names like Academy Award winner Annette Bening and an array of television stars.

Miner is also putting out new music videos through HDSA’s Guthrie Sessions to increase awareness and we wrote our last album while we were being tested so it is about that time in our lives. We’ll be releasing new music in June this year and will continue to tell our family’s story.

Q 5) Favorite show, actor, musician, moment in your career?    Favorite Show: Of all time – The Wire. Currently – Crashing.  Actor: Tina Fey  Musician: Conor Oberst    Moment: Playing the High Sierra Music Festival

Thank you Kate for the interview and supporting my HD fundraising/awareness project.

To purchase my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, go to: http://www.theresecrutchermarin.com

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Have a good day!  Therese

 

Helping Others, Huntington's Disease

Donating Around the World

I have to share with you that my husband, John, will never read my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. He’s lived the story and it is just too painful to revisit, and I get it.

Back in 2010, when I said to him,”I want to honor your sisters in some way” he didn’t say much but he did listen to my idea of writing our story which included his three sisters.

A couple of years into writing the story, John came up with the idea of donating 100% of the books profits to Huntington’s Disease Society of America (HDSA) and then I took it a step further to donate the profits to a Huntington’s organization in the country where the book is purchased. John may not read the book but he has been my steadfast supporter over the seven years I’ve been writing and producing the book. Thank you dear friend, husband, father of my children and my biggest fan!

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Enjoy your day  Therese

Family, Helping Others

HDSA Team HOPE Walk in Sacramento

The 9th Annual Sacramento Team HOPE Walk is June 24th!!!!!!!!

Registration starts at 8:00 am and Walk begins at 9:00 at William Land Park in Sacramento.

Register to Walk:   http://www.hdsa.org/thwsacramento

Northern California Chapter website:   http://www.hdsa.org/norcal

Team Hope Walks aim to raise as much money possible in the local community to support the mission and services of the Huntington’s Disease Society of America. There are many different fundraising strategies you may use to have a successful fundraising campaign, and HDSA suggests you use all of them! Please download the Team Hope Walk Participant Packet and check out the Team Hope website’s Fundraising Tips & Tools (including some fundraising webinars!) and Participant Resources sections.

There will be music…………………………..raffle prizes………………………………… and food

 

 

 

 

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Enjoy your day!  Therese

Photo credit: Randy Heinitz via Foter.com / CC BY

 

Helping Others, Hope

We’re All in This Together

I want to thank those who set up support/informational Facebook (groups) pages i.e.  Huntington’s Support Group…..Huntington’s Disease Raising Awareness….Huntington’s Disease UK…..Huntington’s News……HD/JHD Caregivers……I’m an HD Warrior……Huntington’s Disease Assistance Funds.  Being given the platform to express oneself, and being heard validates our plight. When we are acknowledged by our fellowman, it renews our energy and our spirit.

These groups allow the HD community to connect on a very deep, personal level even though hundreds and thousands of miles separate us.  We are connected because of the similar lives we lead, the similar challenges we have, the similar emotions we feel, the similar fear, guilt and anxiety we live with everyday. 

More importantly, I feel it is the collective power of HOPE I see on these pages for a therapy/cure that keeps us going even in our darkest hours.  Even though HD has stolen our loved ones from us for generations, we are strong and continue to persevere. Over the past seven years, I have found solace and inspiration on the internet and Facebook to continue writing my book, Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family At Risk for Huntington’sThe powerful truth of the disease is what the world needs to hear because no one, but those who live it, truly know what it is like.

I believe the collaborative power we generate, I feel when I read posts, allows the millions of people to live bravely with HD and gives strength to those living “at risk” in the shadow of Huntington’s disease.

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Enjoy your day!  Therese

Helping Others

“Watching Their Dance” a Fundraising/Awareness Tool

The book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is more than a book to John and I. We both agreed the book would be a tool to generate an unlimited amount of money that we will donate.  The second use for the book is to heighten awareness of Huntington’s disease.

We will be donating 100% of the proceeds to Huntington’s disease organizations worldwide. So, what does this really mean??? It means that when one book is purchased from my Author Website and mailed to a reader in the U.S., I will donate approximately $7.00 to HDSA.  When my book is purchased on an Amazon website outside the U.S., I will donate approximately $3.50 per book to a Huntington’s disease organization in the country where the book was purchased. (Amazon provides me with a breakdown of royalties from each country, i.e. United States, Canada, France, Spain, UK, Italy, China, Japan, India).

The reason for the huge difference in profit made between my website and Amazon, it that Amazon is the “middleman”.  Amazon prints, and ships my book to the customer and takes a percentage for a profit. I can’t bash Amazon too much because the company provides a global presence for the book to heighten awareness of the disease.
I would just like the world to know, the reader buying, Watching Their Dance: will receive a good story and will also be making a donation to a Huntington’s disease organization.

My motto is: THE MORE BOOKS SOLD, THE MORE MONEY I DONATE!  



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  Enjoy your day!  Therese 

Photo credit: Ardinnnn 🙂 via Foter.com / CC BY-NC-SA Photo credit: Sarah Camp via Foter.com / CC BY-ND