Watching Their Dance

Watching Their Dance and Beautiful Boy-Memoirs Written With Strong Emotion

Author Therese Crutcher-Marin

I’m currently reading a nonfiction book by David Sheff, Beautiful Boy-A Father’s journey through his son’s addiction. The book was published in 2008 and a movie was released in 2018 with Steve Carrell portraying the father. amazon.com/Beautiful-Boy

Beautiful Boy has been on my to-read list for a while.  The memoir is informative about what happens when his son, Nic, falls to the use of crystal meth, heroin, crack, prescription drugs – whatever the drug the results are pretty much predictable.

After finishing chapter 4, it was clear that Sheff and I had written emotional, heart wrenching stories about the struggles of loved ones with a brain disorder. Addiction and Huntington’s disease are brain disorders, and Sheff and I wrote how the disease affects the whole family.

Watching Their Dance is a journey John and I took through Huntington’s disease; 24 years watching my three sisters-in-law through a long progressive disease process and how my family dealt with it.

amazon.com/Watching-Their-Dance

We Can Never Lose HOPE………………

 

Survival

How I Lived with the Uncertainty of Huntington’s Disease

 

Author Therese Crutcher-Marin

I would say certainty is almost always preferable to uncertainty because we humans like to know!  It was critical for me to know the who, what, where, when and why in my life because being in control calmed my Obsessive Compulsive Disorder (OCD) symptoms. Being out of control threw me into an uncertainty-induced anxiety.

In 1978, the Huntington’s disease (HD) monster was introduced into my life.  John, the love of my life, had an unknown gene status for this fatal, genetic disorder that progressively destroyed the nerve cells in the brain. At that time, I was forced to decide if I could live with this huge unknown factor in my life, uncertainty, and if I did choose that path, could I live happily and not be a basket case.

When I decided to marry John, I realized I had to adapt to a life of uncertainty; change my way of thinking, learn to focus on the positive, find ways not to worry about the future.  So, I began searching for something reliable to grab ahold of.  I discovered four (4) strategies to embrace to make uncertainty bearable.

  1. Live mindfully
  2. Have forgiveness in my heart
  3. Cling to HOPE and to John
  4. Don’t sweat the small stuff

We Can Never Lose HOPE…………………….

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is a poignant remembrance of a love forged in crisis. To purchase the book, go to amazon 

My Author Website is:  https://theresecrutchermarin.com

100% of the proceeds from book sales, is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA).

 

 

 

 

 

 

 

 

 

Photo credit: One Way Stock via Foter.com / CC BY-ND & Photo credit: DES Daughter via Foter.com / CC BY-NC-SA

Huntington's Disease

The Magnolia Journal Talks About Risk

Author Therese Crutcher-Marin

Over the past few years, I’ve seen Huntington’s disease  (HD) featured on multiple television shows, i.e. House, ER, Call the Midwife, and on local and national news channels.

My latest discovery of an article on HD was in Magnolia Journal, inspiration for life and home. A friend who subscribes to the magazine told me about the article so I bought a copy. The theme for the summer edition is, A look at Risk….choosing courage in the face of the unknown. This statement rings true for those living at risk for HD. Info on Magnolia Journal  

After doing a little digging, I discovered Hunter Ward, the young man in the article that is at risk for HD, works at the magazine. I applaud he and his wife for sharing their story because it is not always easy.

To show my gratitude for including the story, I wrote a thank you letter to Chip and Joanna Gaines, HGTV show Fixer Upper, who produce the magazine,  and sent them a copy of my book, Watching Their Dance, which is very similar to Maddie and Hunter Ward story.

For more info on Chip & Joanna:  HGTV Fixer Upper Show

We Can Never Lose HOPE….

 

HDSA Fundraising events

Stretch It Out For Huntington’s Disease-A Yoga Class

STRETCH IT OUT FOR HUNTINGTON’S DISEASE
Do you need some essential oils in your life? Well, this is your chance to win a free aromatherapy rollerball from Love Your Brain Foundation! Sometime during our class on Saturday, we will announce the winner of this raffle. The way it works is easy:
1. Invite friends to this Facebook event or share the link to the HDSA fundraiser page with them directly. https://sanfrancisco.hdsa.org/stretchitout   Each friend you reach out to counts as one raffle entry. I know many of you have already invited friends to the page, so we will accept the following as “invites”: 1) new invites (have not seen link or page before), or 2) personal follow ups to people you have already invited, encouraging them to come to the event
2. Message Amanda Shrewsbury on facebook, instagram, or comment on a post with the number of people you have invited or followed up with. You don’t have to do all of your invites/follow ups at once. I will keep a running tally of your number and you can send as many messages/comments as you’d like!
3. Wait for the announcement of the winner at the event and get excited!
It’s FREE to join the class and donations are welcomed and appreciated.  Sign up and we’ll send you a Zoom link the day before the class.  https://sanfrancisco.hdsa.org/stretchitout
For more information on Huntington’s disease or to make a donation, please visit:  http://hdsa.org
We Can Never Lose HOPE…….
Storytelling

Why I Chose “Watching Their Dance” As The Title Of My Nonfiction Book

Author Therese Crutcher-Marin, HD Advocate

From the moment I began writing my nonfiction book, I knew what the title would be; Watching Their Dance.  It made sense to me because that is what I had done for 24 years, watched my three dear sisters-in-law, Lora, Marcia and Cindy struggle with Huntington’s disease, each with their own unique dance.  

When I first heard about the disease, it was referred to as  Huntington’s Chorea.  The word Chorea is described as an abnormal involuntary movement derived from the Greek word “dance”. It is characterized by brief, abrupt, irregular, unpredictable, non-stereotyped movements. 

The picture is from Chris Furbee’s movie, Huntington’s Dance, that he produced.  https://www.facebook.com/huntingtons.dance/

The nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family at Risk for Huntington’s is my inaugural book.  It’s an inspirational love story while living with the uncertainty of my husband, John, inheriting the fatal brain disorder, Huntington’s disease, which has no cure.

Subscribe to my blog on my author page and I’ll email you the first chapter of the book.  Author website:  https://theresecrutchermarin.com

We Can Never Lose HOPE………….

             

 

 

 

 

 

 

Survival

Stretch It Out For Huntington’s Disease

Please join HDSA volunteer Amanda Shrewsbury, yoga certified instructor, for an hour of peaceful yoga on Saturday, August 22, 2020.  It’s FREE to join and it is virtual so after signing up you will receive a zoom link. 

Sign up here:  https://sanfrancisco.hdsa.org/stretchitout

 

The HDSA San Francisco Bay Area Affiliate wanted to hold an event that could calm folks during this pandemic, which we have never experienced before.  COVID-19 creates stress in our lives;  families are out of work or working at home and trying to teach their kids.  Communicating with loved ones and friends is virtual now and hugs are out of the question.

Caring for a loved on with Huntington’s disease (HD) is stressful enough, and very isolating, and COVID-19, compounds the worry.  HD is a rare, fatal, genetic brain order that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time and there is NO CURE.  What is HD?

I’m the Chair for the HDSA San Francisco Bay Area Affiliate and we are hosting a new virtual event to help with the stress, at least for a little while.

FaceBook Event Page:  https://www.facebook.com/event and San Francisco Bay Area Affiliate FB page:  https://www.facebook.com/hdsasanfranciscobayarea 

We Can Never Lose HOPE………

Author Therese Crutcher-Marin

Thankful

Growing Old Is A Gift

Most people wouldn’t agree that it’s a gift to grow old.  If you have Huntington’s disease (HD) in your family, you probably would agree.  HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time and there is NO CURE.  For more information go to:  http://hdsa.org or visit my author website at:  https://theresecrutchermarin.com 

Unfortunately, HD is in John’s family and his three (3) sisters inherited the mutated huntingtin gene and are gone from our sight.  Each year on the birthday of Lora, Marcia and Cindy, John and I always talk about what age they would be and what they would look like.  Lora died at age 41, Marcia at 49, Cindy at 54 and their mother, Phyllis, at 48.

Lora, Cindy, Marcia Marin

Through the years, our hearts have carried the loss of the sisters and is felt more intensely during the holidays and special occasions because we still want them to be with us.  We can never celebrate a birthday, Christmas, Thanksgiving dinner or just hang out. We miss even something so simple as picking up the phone to talk with them.  What I wouldn’t do to see these kindhearted, nonjudgemental women, who taught me about mindfulness, forgiveness, and unconditional love.

We Can Never Lose HOPE…………

Author Therese Crutcher-Marin

 

 

HDSA Fundraising events

For The Love of Wine and Huntington’s Disease

Sip Back and Relax…

Get ready to sip, swirl and taste amazing wines while supporting families with Huntington’s Disease on August 16, 2020. 

That’s right, by popular demand we put it together!    This is one event you don’t want to miss.

Join us for a night of great wine, great friends and a great cause.                                                                                        All from the comfort of your own home.

For more information or to join us click here: https://app.donorview.com/em6RJ

The wine tasting event supports the nonprofit, Huntington’s    Disease Society of America (HDSA), that is dedicated to improving the lives of everyone affected by Huntington’s disease and their families.  http://hdsa.org

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

HD Clinical Studies, Hope

uniQure Announces First Two Patients Treated in Phase I/II Clinical Trial of AMT130 for the Treatment of Huntington’s Disease

In case you missed uniQure announcement regarding AMT-130, I’m posting the great news for the Huntington’s Disease community around the world.  One of the locations for a clinical for AMT-130 is Ohio State.

Ohio-State-conducts-1st-gene-therapy-clinical-trial-for-Huntington-

~ Milestone Marks the First-in-Human AAV Gene Therapy Trial for Huntington’s Disease ~ Lexington, MA and Amsterdam, the Netherlands, June 19, 2020 —

uniQure N.V. (NASDAQ: QURE), a leading gene therapy company advancing transformative therapies for patients with severe medical needs, today announced that the first two patients in the Phase I/II clinical trial of AMT-130 for the treatment of Huntington’s disease have been treated. To read the complete news release, visitAMT-130_Huntingtons_Disease_FINAL.pdf

I’m a Huntington’s disease advocate, the Chair for HDSA San Francisco Bay Area Affiliate, a blogger and the author of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.

John and I have donated 100% of the profit from the book to the nonprofit, Huntington’s Disease Society of America (HDSA).  To date, we’ve gifted over $15,000.00. Review by GoodreadsGoodreads.com-Watching-Their-Dance

My family wants to see the eradication of this horrific disease that has devastated the Marin Family for generations.

We Can Never Lose HOPE……………

                     

 

Huntington's Disease

ABC News Special Report on Two Huntington’s Disease Families

On July 3rd, 2020, ABC News’ Linsey Davis follows two families grappling with the rare genetic disorder Huntington’s disease (HD), compared to ALS, Parkinson’s disease and Alzheimer’s disease all in one.  (if video didn’t transfer, click here to watch the video:  https://youtu.be/USwMplVl5vQ)

I was ecstatic when I saw the video on ABC. I don’t know how this came about but I bet the nonprofit, Huntington’s Disease Society of America (HDSA) had something to do with it!   

Thank you ABC News.  

The more awareness created about HD, especially by news organization like ABC, the more people will know about this horrific genetic disease with NO CURE.  What-is-Huntington’s Disease?

HDSA and many other nonprofits are being challenged due to COVID-19.  Most of HDSA fundraising events were changed to VIRTUAL and with so much uncertainty in our lives, donations are down.  To make a donation to HDSA and help in the fight against Huntington’s disease, click here HDSA-Make a Donation

Author Therese Crutcher-Marin Book Signing in Auburn CA

Thank you for reading my blog.  I’m an HD advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.  100% of the profits are donated to HDSA. 

My author website:  https://theresecrutchermarin.com

 

We Can Never Lose HOPE….