Family, Helping Others

Christmas Around the World

                   From my family to yours, Merry Christmas!        

Author Therese Crutcher-Marin

Even though we can’t, or shouldn’t, celebrate the birth of Christ with family and friends, I believe it’s a small price we pay to heal the world from the COVID-19 pandemic.  This is a sacrifice we, as human beings, do for one another. 

I’m reminded that, as human beings, we all share the same sadness, the same hopes, the same potential. The pandemic has showed us how interdependent we are: what happens to one person can soon affect many others, even on the far side of our planet.

John and I are staying home for Christmas, like we did for Thanksgiving, even though we’re dying to see our children and friends.  I’ve taken to remembering Christmas’s past with family and those memories will get me through this Holiday season.

The pictures are of from 2018 Christmas in Cortona Italy with Family.

    

Please have a safe and peaceful Christmas.

We Can Never Lose HOPE…..

Author Website:  https://theresecrutchermarin.com

Author Therese Crutcher-Marin Book Signing in Auburn CA

 

Storytelling

An Amaryllis Christmas Story

Author Therese Crutcher-Marin

I’m sharing a story about a friend who purchased Huntington’s Disease Society of America (HDSA) Amaryllis Holiday Kits and sent them to her family to stay connected during the holidays.  The amaryllis commonly symbolizes strength and determination. The Huntington’s disease (HD) community has adopted this flower to represent hope and celebrate the advancements in HD research. HDSA Annual Event 

HD is a rare, fatal, genetic brain disorder that has symptoms of ALS, Parkinson’s and Alzheimers synonymously and there is NO CUREWhat is HD 

The bulbs are bringing fun and connectedness to the ladies in her family at this somewhat isolating holiday time. She ordered 7 bulbs and mailed them to San Diego (2 nieces), Modesto (2 sisters), Colorado (daughter), near Fresno (daughter) and she kept one.   They all planted on December 1 and named their bulbs.  (One is Minnie, one is Amy, etc. One is even Pancake because it sits on a shelf next to the pancake mix.) 

Every Sunday they measure the heights of their stalks, send each other a picture, and the race is on!  The bulb owner who ends up with the tallest stalk when there is a full bloom is the winner of a Cold Stone gift card. They are finding it amazing how different the growth patterns are when they all were planted at the same time.

My friend feels her family challenge is a bit silly – but they are having great fun staying connected over the holiday in this way.  She is already telling herself to remember it for next year again!

We Can Never Lose HOPE……

Thank you to my friend for supporting HDSA in the fight against his horrific disease and finding a unique way to connect with loved ones. 

The Non Fiction Book

Give a Book for Christmas That Supports a Cause

Author Therese Crutcher-Marin

Merry Christmas and Good Tidings to you and your family.

Books are always a great gift especially when it supports a cause.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s Disease (HD), is John and my love story while living in the shadow of Huntington’s disease. Book Reviews  

Lora, Cindy, Marcia Marin

HD is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Alzheimer’s and Parkinson synonymously and has NO CURE100% of the proceeds from the sale of the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against HD.  

The incentive to write my story was to honor my three sisters-in-law, Lora, Marcia and Cindy, who lost their lives to HD complications. Furthermore, the book heightens HD awareness, and, currently, 41,000 Americans live with the disease and over 200,000 live at risk. 

With that said, I ask for your Help in the Fight Against Huntington’s Disease by purchasing my nonfiction Watching the Dance Huntingtons Diseasebook.  Amazon-Watching-Their-Dance      BarnesandNoble-Watching-Their-Dance    thriftbooks.com   Author website: e-file $6.99purchase-book

I believe the world needs to hear HD families stories.

We Can Never Lose HOPE…………

 

Love

In Memory of James Keith Crutcher

My father and me in 2018

My father, James Keith Crutcher, is now gone from my sight.  On December 13th, 2020, he got his wings and flew to heaven to be reunited with my mother, Rita, the love of his life.  He was 91 years old and he will be greatly missed by his children, grandchildren, Trina his sister and other relatives.

Through this experience, I’m reminded that when we LOVE, we will experience tremendous grief when losing that person.

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 sorrow that can occur.

Family

 

Jim, Trina & Ellen

 

 

We Can Never Lose HOPE…….

HD Advocates

Kate Miner-An Advocate for Huntington’s Disease

Kate Miner is a champion for Huntington’s disease and an amazing multi-talented woman.

On December 9, 2020, TVOM, an entertainment online magazine, wrote a story about her:

10 Things You Didn’t Know About Kate Miner”

Here’s one of the 10:

8. Huntington’s Disease Runs In Her Family

“No matter how healthy of a lifestyle you try to lead, there will always be things that are out of your control due to genetics. A few years ago, Kate found out that Huntington’s Disease runs in her family. According to the Mayo Clinic, “Huntington’s disease is a rare, inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain. Huntington’s disease has a broad impact on a person’s functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders.” Kate tested negative for the gene that carries the disease, but her sisters tested positive.”    To read the full article on Kate, visit: https://www.tvovermind.com/kate-miner/    

Kate at a HDSA Convention with Michael Miller

Kate is a multi-talented woman; she’s a musician, singer, actress and Huntington’s disease advocate.Kate organizes the HD FREEZE Gala every year in Los Angeles that supports the nonprofit, Huntington’s Disease Society of America.  Her celebrity friends attend and are very generous. In 2020, the event raised over $200,000.00, even with the pandemic raging.  In 2019, HD FREEZE raised  $420,000.00.

2020 HD Freeze             2019 HD FREEZE

We Can Never Lose HOPE………….

Therese-Author

The Ultimate Act of Betrayal

Author Therese Crutcher-Marin, HD Advocate

Through the years, I’ve lived with the fact that I betrayed John when the Marin family discovered their mother had Huntington’s disease (HD). What is HD

John and I were college sweethearts, graduating from college and planning our lives together.  I turned by back on the relationship because I was scared, confused and didn’t feel that I was brave enough to live with this huge uncertainty in my life.   

Betrayal is the breaking of a trust, or confidence that produces moral and psychological conflict within a relationship amongst individuals.  I definitely was conflicted in my mind and heart when I betrayed John. My mind said, “You can’t live with the unknown”, and my heart said, “Take a chance. He’s the love of your life…..be with him”.       

Ultimately, I found my way back to John and embraced life with him and I have never regretted it.  John was the only Marin sibling out of four that did not inherit the mutated huntingtin gene.  We are forever grateful.

What is a mutated huntingtin gene?

We Can Never Lose HOPE…….

Blogging

Why I Blog

Author Therese Crutcher-Marin

I started writing a nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, in 2010. The experts in the book world suggested developing a website, mine is WordPress, before a book is published to have a platform to promote it on.               

So, I started building my Author Website, https://theresecrutchermarin.com in 2014 and my first blog was published on May 1, 2015.

Today, I write a blog twice a week and 80% of them are centered around Huntington’s Disease and my experience, heartache, tough decisions, stress, over 36 years, with three sisters-in-law dying from the disease.  What is Huntington’s Disease 

My goal in writing a blog is to disseminate information to Huntington’s disease (HD) communities in the United States.  I vowed to myself, that through the blog, FaceBook, Twitter and LinkedIn, I would share resources so no one had to feel alone.  When Lora, Marcia and Cindy were struggling with HD the resources were scarce and John and I felt very alone.

The nonprofit, Huntington’s Disease Society of America (HDSA), has a blog on their website that is published weekly, reported by Dr. Leora Fox, PhD, Senior Manager, Research & Mission Programs.   https://hdsa.org/blog/

Below is the header on my author website:

We Can Never Lose HOPE……………

HD Research

Ask The Scientists……..Anything About Huntington’s Disease

Author Therese Crutcher-Marin

On September 8th, 2020 Drs. Ed Wild, Jeff Carroll, Rachel Harding & Sarah Hernandez answered HD Research questions live.  To watch this webinar go to:  https://youtu.be/dUsEnvPftDM

*SAVE THE DATE*: On Tuesday, December 8th at 12pm (ET), HDBuzz co-creator Dr. Jeff Carroll along with editors Dr. Rachel Harding and Dr. Sarah Hernandez will answer your Huntington’s Disease research questions. 

To register, visit https://hdsa-org.zoom.us/webinar/register/WN_JmHeoAK5QH-yWHP4ja5YoQ

We Can Never Lose HOPE……..

Family, Love

Alzheimers-Another Neurodegenerative Disease

Unfortunately, I now have experience with two (2) neurodegenerative disease; Huntington’s disease and Alzheimers.       

Author Therese Crutcher-Marin

What is Alzheimers       

What is Huntington’s disease

My family celebrated my father, James Keith Crutcher’s, 91st birthday on November 9th at Almond Gardens, a Residential Care Facility, where he now lives. Last year, the family noticed, that he was forgetting things, wasn’t keeping up the house and when he told us he wanted to move to a senior apt. complex that offered congregate meals, we moved him quickly.

I stayed a week with him in his new apartment to help with the transition.  I soon discovered, since I haven’t lived with my dad since I was 19, that he had dementia. He took many falls at the apt. after I left and had a subdural hematoma and had to have brain surgery.  He survived and John and I brought him to our home to rehab.  For (4) months, with the help of home health, he improved physically but mentally we saw a decline.  In August, he was diagnosed with Alzheimers; another cruel brain disease.

Alzheimer’s has quickly attacked my dad and my heart breaks as I watch my father slip away.  And now because of COVID-19, we cannot even visit.  I pray that one day he will not wake up and can be with my mother again in the heavens above.

We Can Never Lose HOPE…

 

 

 

 

Thankful

Celebrating Thanksgiving Will Be Different This Year

This Thanksgiving will not be like any Thanksgiving ever before. The culprit is COVID-19, the pandemic that we have been struggling with for most of 2020.

With that said, my family, Keith, Fran, Vanessa, Scott and my sister’s family have decided to all stay home.  Fran is six (6) months pregnant and it’s just not worth it because we certainly don’t want her to COVID-19.  We will look forward to 2021 Thanksgiving and the addition of our first grandchild.

It’s no doubt, we will remember this Thanksgiving for a long time.

I remind myself often, that even though it’s been a challenging time for our nation, I have many things to be thankful for; my family, democracy in our nation, friends and my health.

From my family to yours, I hope you and your family have a wonderful, peaceful Thanksgiving.

 

We Can Never Lose HOPE……………..