Grief

There Are No Rules for Grieving

Grief is as individual as you are. We are all unique, having had different life experiences that make us who we are.

So, I think it is safe to say, each of us will undergo a different grief experience.  There are no rules set in concrete regarding Grief.  In other words, there’s no certain way to grieve, or a certain time when you should be over it and no certain time to move on.

A few tips to help when you are grieving:

  1. Express yourself. Talking is often a good way to soothe painful emotions. …
  2. Allow yourself to feel sad. It’s a healthy part of the grieving process.
  3. Keep your routine up. …
  4. Sleep. …
  5. Eat healthily. …
  6. Avoid things that “numb” the pain, such as alcohol. …
  7. Go to counseling if it feels right for you

Articles on Grief:

http://www.mentalhealthamerica.net/conditions/coping-loss-bereavement-and-grief

https://www.nhpco.org/resources/grief-and-bereavement

Book on griefGriefland https://www.amazon.com/Griefland-Thomas-Nadelin/dp/1257060317

If you are interested in finding a local bereavement support group, look up a hospice program because they offer support groups you can attend free of charge in the community.

I grieved my three (3) sisters-in-law who died of complications from Huntington’s disease for many years.  It was not until I finished writing John & my story & publishing the nonfiction book, Watching Their Dance, did I feel like I had dealt with my grief and found peace.

We Can Never Lose HOPE….

              

Fundraising, HD Advocates

Trey Gray-Drumming Up Huntington’s Disease Awareness

Trey Gray, a famous drummer, and his friends held a special evening at the Vegetable Buddies establishment in South Bend Indiana http://buddiesdtsb.com/ last October.  The band hosted a concert, and because of his notoriety, Trey raised $50,000.00. These dollars are  being donated to the nonprofit Trey started in 2015, the Huntington’s Disease Foundation.

The Huntington’s Disease Foundation was founded in 2015 by co-founders Trey Gray, Doug Michael and Anett Pappas. The Foundation is recognized and registered in Texas as a 501 (c) (3) non-profit charity.   The Huntingtons Disease Foundation

To watch the television news report regarding Trey’s concert, please click on link below:

https://www.abc57.com/news/professional-drummer-from-south-bend-raises-money-for-huntingtons-disease

We Can Never Lose HOPE….

Trey wrote a book jacket comment that appears on the back cover of Watching Their Dance.  100% of the profits are being donated to the nonprofit, Huntington’s Disease Society of America, HDSA.  

The book is available on Therese’s author website http://www.theresecrutchermarin.com & many book websites like Amazon

HD Research

Stanford University Huntington’s Disease Study

Kristina Cotter, a Ph.D/M.S. Candidate, Genetic Counseling is spearheading a Huntington’s disease project.  This is what Kristina shared with me.

“This study is Stanford IRB-approved and is an Huntington’s Disease Society of America (HDSA) sanctioned study. I designed it as a part of my master’s research project for Stanford’s genetic counseling program. I’ve been working with Leora Fox at Huntington’s Disease Society of America (HDSA) https://www.linkedin.com/in/leora-fox-28a59562/to help get the word out. It is advertised on the HDSA website at this time, and support group leaders should be sending out information soon.”

What-is-Huntington’s Disease

To participate in the survey, go to:

https://stanforduniversity.qualtrics.com/jfe/form/SV_6tC4lT283jDvqPr

This is how it begins:

To continue with the survey, click on the link above.

We Can Never Lose HOPE……….     

100% of the profits from Watching Their Dance, a nonfiction, inspirational love story while living in the shadow of Huntington’s, is being donated to the nonprofit, HDSA.

                       

Family, HD Research

Kate Miner’s Sister Jenne Coler-Dark

Many of you may not know that Kate Miner, actress, musician, Huntington’s Disease (HD) Advocate has HD in her family.  Her mother, and two sisters tested positive.  Kate tested negative.  What-is-HD? 

Jenne Coler-Dark & her husband

Kate & her 2 sisters

Last year, when I was publishing my book, Watching Their Dance, I reached out to Kate requesting a book jacket comment.  She graciously agreed and her comment appears on the front cover. Kate and her husband are supporters of the HDSA FREEZE HD event that was held on Sept. 22, 2018 in Los Angeles.

A few days ago, I found this awesome film, The Race, that includes Jenne Coler-Dark’s HD story, Kate Miner’s sister and who is gene positive. Read Jenne Coler-Dark’s Story

The film is about a young, idealistic Huntington’s Disease researcher who comes face-to-face with three generations of a family devastated by the fatal, incurable disease she studies. For the scientist, who has never met anyone with Huntington’s Disease, the stakes of her research become real. For a Huntington’s Disease patient at the center of the story who is watching her mother sicken, fearing her own demise, and afraid for her two kids, it’s a mother’s plea – and a race against time  

To watch the film, please click on link below:

https://theaudienceawards.com/films/the-race-207129?fbclid=IwAR3qzCaijs6hOCgXkaK6VaHSG957KWs7HephWX9qOJK87U-J2m8JBBqqAMQ

  100% of the proceeds from the book are being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). It’s available on many book websites like Amazon.com

We Can Never Lose HOPE……………………….

 

 

 

 

 

Love

Grief Is The Price For Love

When we LOVE, we don’t realize that at some point in our life, we will experience tremendous grief when losing that person.

Would you turn away from loving a person because of the pain you will experience?  I don’t believe so.

If you don’t open your heart to love, you will never know grief because grief and sorrow are the price we pay to LOVE. The death of someone you LOVE is one of the greatest sorrows that can occur.

“Every time we make the decision to LOVE someone, we open ourselves to great suffering, because those we most love cause us not only great joy but also great pain. The greatest pain comes from leaving…the pain of the leaving can tear us apart. Still, if we want to avoid the suffering of leaving, we will never experience the joy of loving. And LOVE is stronger than fear, life stronger than death, hope stronger than despair. We have to trust that the risk of loving is always worth taking.” — Henri Nouwen

Articles on the relationship between love and grief:

https://thriveworks.com/blog/grief-love-losing-someone-never-easy-focus-good/

https://themindfulnessapp.com/grief-is-the-price-we-pay-for-love/

We Can Never Lose Hope………

Therese’s book can be purchased on many book websites like Amazon.com

 

 

 

 

 

HD Advocates

Update on Trey Gray-Musician, Father & HD Advocate

Trey Gray, celebrity, talented drummer who has played with many famous musicians like Faith Hill, Reba McEntire and Brooks & Dunn is also a Huntington’s disease advocate.  He tested positive in 2003.

In 2017, Trey was kind enough to write a book jacket comment that appears on the back cover of my book, Watching Their Dance. His comment: “Tears, laughter, blessings, and hope…….an amazing story that will touch, and help, I pray, everyone who reads it”.   What is HD?

Trey is engaged to Jess Lucille who is also a musician in the StarHeart band.  They have a son, who is cute as a button.

To watch the Artist Spotlight interview with Trey, go to https://www.youtube.com/watch?v=rZGFROA-4yA#action=share

The picture above includes:  Chris Chapman, Joe BishopPaul Erdman and Trey Gray.

We Can Never Lose HOPE………..

    

100% of the proceeds from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Available on amazon.com and many other book websites.

 

 

 

 

 

 

 

 

HDSA Fundraising events

TV Interview with Huntington’s Disease Advocates Therese Crutcher-Marin & Amy Fedele

Amy Fedele and myself were lucky to be on KXIP CBS Channel 5 San Francisco to promote the 2018 HDSA San Francisco Team Hope Walk (October 13, 2018). Thank you CBS, and Pat Rose, San Francisco publicist who donated her time to get us on TV!

Click here to watch the interview:  https://cbsloc.al/2CPiH5v

A picture of my nonfiction book, Watching Their Dance, was shown on the screen during our interview. 100% of the proceeds from the book is being donated to the nonprofit, HDSA.  My Author Website

To purchase book:   https://www.amazon.com/-/e/B06ZY85776

Huntington’s disease is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers disease at the same time.  There is NO CURE!  Only approximately 30,000 American’s have the disease and 10% of those cases are children with Juvenile Huntington’s disease.   What is Huntington’s disease 

We Can Never Lose Hope……….

Family, Thankful

My Family is Everything

I don’t know what I would do without my family; especially John.  My kids, Keith and Vanessa, are also terrific and stand right along beside me, along with their spouses, Fran and Scott.  Although I don’t say it enough to them, I have the best family.

I’m blessed and thankful to have these people in my life, knowing they will always be there for me and, in turn, I will always be there for them.  My love for them continues to grow along with the appreciation I feel for them.  why-family-is-not-an-important-thing-its-everything/

Since I’m a Huntington’s disease (HD) advocate, and an active volunteer with the Huntington’s Disease  Society of America (HDSA), I use HDSA’s hashtags,  #FamilyIsEverything and #HDSAFamily on my blog, Facebook wall, twitter, Instagram and Google+ posts all the time.  What is Huntington’s disease/

Give your family members a hug, forgive and remember, Family is Everything! 

 

 

              

 

 

 

Resources

Huntington’s Disease Online Support Groups

In the past few years, Huntington’s Disease of Society of America (HDSA) has been offering online support groups for those struggling with Huntington’s disease (HD) or living at risk.  I think it’s a great service to offer because not everyone in the U.S. has access to a  support group close to their home.  HD is a rare, fatal, genetic brain disorder that is like having ALS, Parkinson’s and Alzheimers at the same time.  There is NO CURE. http://www.hdsa.org

To participate in the group, please sign up.  Here is the link to do so:  https://www.supportgroupscentral.com/groups_

Melissa Billardi, HD advocate, Founder, President, CEO of HD Support & Care Network, offers a weekly call in support type group.  It is on Thursdays on See Me HD Group Call at 1:00 pm PT/4:00 pm ET   Join from computer:  https://PMDAlliance.zoom.us/j/769346544  

Or Telephone: Dial: +1-408-638-0968 (US Toll)
Or +1-646-558-8656 (US Toll)
Meeting ID: 769 346 544

Melissa’s Facebook page and HD Support & Care Network website:

https://www.facebook.com/Mbiliardi           http://www.hdscn.org/

We Can Never Lose HOPE………….

100% of the profit from Watching Their Dance is being donated to Huntington’s Disease Society of America (HDSA).  In December, I donated $9,015.00 to HDSA which was the profit from 2017 book sales.

 

Taking Care of Yourself

The Color that Soothes Me: Purple

Do you have a color that soothes and relaxes you?  I’ve loved purple since I was a little girl and when I wear it, it makes me happy.  When John and I got married in 1980, my bridesmaids dresses were a soft lavender shade.  It’s hard to find purple in woman’s clothes, so when Vanessa, my daughter, and I shop, we’re both on the look out for anything purple.  My Aunt Trina sends me Lavender chamomile body wash and lavender mist spray to put on my pillow at night

Because of my love for Purple, Wednesday is my purple day and I post pictures with shades of purple on my Facebook wall.  https://www.facebook.com/therese.crutchermarin

“Violet signifies strength, peace and wisdom. It has the capacity to bring balance and make you feel inner peace:  Read more at:
7 Relaxing Colors and How They Can Affect Your Mood 

Enjoy these beautiful pictures and poignant quotes!

We Can Never Lose HOPE…..