Browsing Tag

#huntingtonsdisease #WatchingTheirDance #HDSA

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.

                       

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……….

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….. 

 

 

Hope

HOPE-A Powerful Emotion

When I decided to marry John, even with his unknown gene status for Huntington’s disease (HD), the cruelest disease on the planet with NO CURE, instead of worrying every minute of every day, I chose to cling to HOPE.  what is HD?

HOPE is a powerful emotion that gave me strength, so at night when I went to bed, I wrapped my arms around John and HOPE.  Both gave me the strength I needed and I lived with HOPE in my heart for 38 years. (I still have HOPE that one day there will be a cure for Huntington’s disease.)

HOPE also calmed my FEAR, another powerful emotion, that can consume your thoughts.  

When the world says, ‘Give up’ HOPE whispers,

                      ‘Try it one more time.’

In every book I sell, I write:

We Can Never Lose HOPE………………….

An inspirational love story while living in the shadow of Huntington’s disease.

The theme’s in the book are HOPE, UNCONDITIONAL LOVE and FORGIVENESS.

You can find the book on many book websites like Amazon www.amazon.com/Watching-Their-Dance-

HDSA Fundraising events

San Francisco Team Hope Walk October 13

Amy Fedele is the Coordinator for the SF Team Hope Walk. (with husband, Matt)

The Team Hope Walk program is Huntington’s Disease Society of America’s (HDSA) signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. All proceeds support HDSA’s mission to improve the lives of people affected by HD and their families.  In 2018, 94 Team Hope Walks will be held across the U.S.

Huntington’s disease (HD) is a rare, fatal, genetic brain disorder that is like having ALS, Parkinson’s and Alzheimer’s at the same time.  There is NO CURE.  It slowly deteriorates a person’s physical and mental abilities and usually strikes during prime working years. 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://www.hdsa.org

Please help in the fight against HD and Juvenile HD by supporting the Walk or becoming a Sponsor.  To register, http://www.hdsa.org/thwsanfrancisco or to be a Sponsor, please email Amy Fedele, Walk Coordinator at: hdsabayarea@gmail.com  Read Amy’s story:  Amy Fedele’s Story

 

We Can Never Lose HOPE………..

End-Of-Life Issues

Make Your Wishes Known

Author Therese Crutcher-Marin

Our society today doesn’t like to talk about end-of-life issues even though no one gets out of this life alive.  Since each one of us will the confronted with our own mortality, wouldn’t you want to control what happens to you at the end of your life?  You can document your wishes by filling out an Advance Health Care Directive or a Power of Attorney for Health Care.  John and I have a Power of Attorney for Healthcare in our Living Will that our attorney created for us.

One way to have your family/friend abide by your wishes, when the time comes, is to have an Advance Health Care Directive form completed.  It’s not just having it filled out, it needs to be distributed to your family/friend who will be your advocate and in your medical chart at your doctors office/hospital.

An Advance Health Care Directive is a gift to your family.  Making end-of-life decisions ahead of time will lower anxiety, and allow the doctor to design a plan of care based on the directive.

To read about directives go to:

Express your Healthcare Wishes with an Advance Directive  

and Advance Care Planning

A copy of an Advance Health Care Directive from the California Hospital Association can be downloaded here:

https://www.calhospital.org/sites/main/files/file-attachments/form_3-1_-_english.pdf

We Can Never Lose HOPE…..