Grief, The Marin Siblings

What is Survivor Guilt?

My husband, John, suffers from Survivor Guilt since he survived Huntington’s disease when his three sisters did not.  It’s not uncommon for guilt to arise in grief.

“On a basic level, survivor guilt is exactly what it sounds like: a sense of deep guilt that comes when one survives something.  If you have heard of survivor guilt before what likely comes to mind is survivors of wars, natural disasters or other traumas.  Survivor guilt was actually first documented and discussed after the Holocaust and what has become clear in the decades that have followed is that survivors’ guilt is far more common than was initially understood.”

Articles on survivor guilt

 https://whatsyourgrief.com/understanding-survivor-guilt/ 

https://www.psychologytoday.com/us/blog/how-be-yourself/201711/six-tips-handling-survivor-guilt

So when might one experience survivor guilt?

-After causing an accident in which others died
-Guilt for not being present at the time of an accident to potentially save the person who died
-When a child dies before a parent
-Death of a sibling, especially in the case of an illness

We Can Never Lose HOPE……

Author Therese Crutcher-Marin is donating 100% of the profits from her book to Huntington’s Disease Society of America.  https://www.amazon.com/-/e/B06ZY85776

 

HDSA

National Youth Alliance-Helping Young People Deal with Huntington’s Disease


HDSA’s National Youth Alliance (NYA) motivates youth to get involved in their local Huntington’s Disease Society of America Chapter. Every child of a parent with HD has a 50/50 chance of inheriting the expanded gene that causes the disease. If the child has not inherited this expanded gene, he or she will never develop the disease and cannot pass it on to their children.

The Miller Family whose 3 children are involved in the NYA.

The NYA is made up of young women and men ages 9-29 from across the U.S. that are impacted by Huntington’s.

The NYA mission to not only support young people within the HD community, but also inspire the youth of HDSA to get involved in the battle against HD and be proactive in this fight.   http://nya.hdsa.org/ 

Talking to Kids about HD: http://hdsa.org/wp-content/uploads/2015/05/TWKBrochure-FINAL-WEB.pdf 

We Can Never Lose HOPE………

 

Therese is the author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. 100% of the proceeds are being donated to HDSA.   https://www.amazon.com/-/e/B06ZY85776

Family, HDSA

The Faces of Huntington’s Disease

In the following video are the faces of Huntington’s disease (HD); a devil of a disease that attacks adults and children.  Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It’s like having ALS, Parkinson’s and Alzheimers at the same time.  HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.  http://hdsa.org/what-is-hd/ 

My three sisters-in-law, Lora, Marcia and Cindy had HD and are now gone from our sight.  http://www.theresecrutchermarin.com 

There is no cure or therapy at this time.  

Video taken at the Huntington’s Disease Society of America (HDSA) Annual Convention, June 7-9-18, in Los Angeles, CA and I was there!

We can Never Lose HOPE….  

A Love Story

Writing Your Story to Heal

John and I have just returned home from the Huntington’s Disease Society of America (HDSA) Convention in Los Angeles, California where I promoted my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.  Author Website: http://www.theresecrutchermarin.com

The question I get asked most often when I interact with folks is, “Why did you decide to write a book?”  My reply is, “The motive was purely selfish because I was looking a way to heal from the loss of my three sisters-in-law to the cruelest disease on the planet; Huntington’s disease”.  Article:  The Healing Power of Telling Your Story 

In 2008, Cindy, my third sister-in-law passed away and in 2010, I began writing my story.  A counselor I’d seen for years suggested I write a book as a way to heal.  Seven years later, in 2017, I held a book in my hands and could honestly say, “the process of writing my story, validated what I had gone through, and allowed me to move the grief I harbored to the pages of the book; so, yes, I have healed”.  

Article on Benefits of Writing:   Writing About Emotions May Ease Stress and trauma  

We Can Never Lose Hope

HDSA

HDSA Convention-June 9, 2018-HOPE

Huntington’s Disease Society of America Annual Convention Continues: 

Today, Saturday, June 9th, has many workshops to offer to attendees again. Here is the link to today’s schedule.    https://guidebook.com/guide/119978/schedule/#date/06-07-2018

The morning will be spent listening to the experts at the HDSA Research Forum.

Please REMEMBER, some of the workshops will be LIVE STREAMED. Go to:  https://guidebook.com/guide/119978/list/586374/

In the afternoon,many Workshops are available to select from.  Here are a few: 

  1. Benefits of Staying Connected with Your Center of Excellence
  2. HD Activity Center for Persons with HD
  3. HDSA Special Events and Fundraising to Catapult our Mission Work
  4. How to Effectively Manage the Motor Symptoms of HD
  5. Diagnosing and Managing JHD

From 6- 7  p.m., is the Gala Reception and dinner and dancing goes on until 1 p.m. The Gala brings the 33rd HDSA Annual Convention to a Close.

       

We Can Never Lose HOPE…….

John, Dr. Vicki Wheelock, and myself at the 2017 HDSA National Convention in Schaumburg IL.

HDSA

HDSA Convention-Kickoff-June 8, 2018

Huntington’s Disease Society of America Annual Convention Continues: 

Today, Friday, is the day we begin to explore Huntington’s Disease topics  presented by experts/researchers/doctors in the HD world.  The presenters travel from around the world to speak at this convention, so I feel very lucky to be attending.

At 9 a.m., the day will begin with the Opening Keynote Speaker.

By early morning, the attendees will select the Educational Workshops they wish to attend

Please REMEMBER:  Some of the workshops will be LIVE STREAMED.  Go to:   https://guidebook.com/guide/119978/list/586374/

At noon, there will be a Community Awards Luncheon.  

The HDSA National Youth Alliance (NYA) will perform a Talent Show at 7 p.m.

 

We Can Never Lose HOPE….

 

 

HDSA

HDSA Convention-Leadership Day-June 7, 2018

Huntington’s Disease Society of America Annual Convention Continues: 

Day 1.  Leadership Day, for those in HDSA Chapters with Leadership roles, is today, June 7th.  It will start off at 8 a.m. with a Continental Breakfast and at 9 a.m., Nancy Rhodes, Director of Field Development & Operations, and Bill Kline will be our first speakers.   http://hdsa.org/about-hdsa/annual-convention/

After the meeting, at 6 p.m., there will be a Team Hope Walk for all to participate in.  (You will receive a Team Hope Walk t-shirt.)

Then, the Convention Welcome Reception will begin at 7 p.m. and the Exhibit Hall will be open.  (HDSA is graciously allowing me to sell my book again this year).

 

We Can Never Lose HOPE…………

HDSA Northern California Chapter Convention/Education Day

 

 

 

HDSA

HDSA Annual Convention-June 6, 2018-Here We Come

Today, is a very exciting day as hundreds of folks flying, driving to Los Angeles to attend the 33rd Huntington’s Disease Society of America (HDSA) Annual Convention.   http://hdsa.org/about-hdsa/annual-convention/  

John and I are also on our way, in our RV; it’s about an eight hour drive from Northern California.  We’ll be staying a Dockweiler State Beach; it has 3.7 miles of ocean frontage and 288 acres of beach and only four miles from the Marriott Convention Center where the Convention is being held.

This is my second Convention, and I was so impressed with HDSA staff, the support and hope that resonated throughout the three days last year.  I truly believe this is my second family who understand the Huntington’s Disease journey because they are living it just as I did for 25 years with my three sisters-in-law, Lora, Marcia and Cindy Marin.

We Can NeverLose HOPE…………………

John, Dr. Vicki Wheelock, and myself at the 2017 HDSA National Convention in Schaumburg IL.

HOPE Walk held outside convention center at the 2017 HDSA National Convention in Schaumburg IL.

James and Mel Miller at the 2017 HDSA National Convention in Schaumburg IL.

 

 

Taking Care of Yourself

Free Online Huntington’s Disease Support Group

Did you know Woody Guthrie had HD? He did!

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

Medical News Today Article: What is HD?  

HDSA Online Caregiver Support Group     

This HDSA group is open to caregivers to a loved one with HD who does not have access to an in person group because of distance, time constraints or whatever.  If it is easier for you, please register. The group will meet monthly with a changing leader and changing members due to expanded geography. To sign up:   https://www.supportgroupscentral.com/join_as.cfm?cid=27

We Can Never Lose HOPE………...

I will be selling my nonfiction book Watching Their Dance at the HDSA Annual Convention in Los Angeles this week.  HDSA is receiving 100% of the proceeds.

Hope, Huntington's Disease

Great Time to Get Involved

Today is the last day of May; HD Awareness Month. With the publicity generated this month by HD organizations and community members, hopefully, we have heightened awareness of this horrific disease that devastates HD family for generations.  

I wish to thank Dr. Carroll, a gene positive HD advocate and a devoted, brilliant HD researcher, who has done so much for Huntington’s disease.  Jeff says it a great time to become involved in HD research!  

Dr Jeff Carroll, PhD — Boston, USA  https://westerntoday.wwu.edu/features/psychology-s-jeff-carroll-awarded-new-100k-grant-to-research-huntington-s-disease  

 Article, Slightly long CAG repeats are more common than we thought.

For more information about Huntington’s disease please visit  http://www.HDSA.org  & join the fight! To for more information about HD Clinical Trials please visit  http://www.HDTrialFinder.org 

#LetsTalkAboutHD    #HDSAFamily