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……………..

Love, The Marin Siblings

Haunted by Three Lovely Ladies

Lora, Cindy and Marcia Marin

Since losing my three sisters-in-law, Lora, Marcia and Cindy Marin, to Huntington’s disease complications, at young ages, I am haunted by their memory.  John and I were by each of his three sisters’ side while they struggled with Huntington’s disease for 24 years. These experiences are embedded in my mind, heart and soul.

Lora, Cindy, Marcia Marin

Most people associate the word “haunt” as a bad, troubling experience, but to me “haunt” is: to recur persistently to the consciousness of; remain with; not easily forgotten.  I’m no psychologist but I believe I consciously chose to have Lora, Marcia and Cindy remain in my heart and, yes, creep into my consciousness everyday.  I believe this is my way of keeping their memory alive, honoring them because they tremendously influenced my life.

Maybe one day, after I’ve done my best to help the nonprofit, Huntington’s Disease Society of America (HDSA), these ladies will not live in the fore front of my mind and I will find peace knowing I’ve done everything I could to remember them. 

Author Therese Crutcher-Marin

We Can Never Lose HOPE……

To receive the first chapter of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, visit my author website Author Website  and sign up for my blog and I’ll email the chapter to you.  (signup is on right side of page)

 

 

HD Research

HSG-Clinical Research Network Focused Exclusively on HD

Since I’m strongly connected to the nonprofit, Huntington’s Disease Society of America (HDSA), I did not know much about The Huntington Study Group (HSG) which is a clinical research network focused exclusively on Huntington’s Disease. https://huntingtonstudygroup.org/

Despite the COVID-19 pandemic, scientists, clinicians and industry experts are still meeting (albeit online) to discuss the latest research in HD drug discovery and the findings from HD clinical trials to continue to push HD research forward.

On October 29th, the HSG began with a schedule jam-packed with virtual talks from researchers, clinicians and different companies who are all working towards finding new medicines for HD. The day encompassed many interesting presentations which covered a lot of the recent developments in HD drug discovery. huntingtonstudygroup.org/about/our-annual-meeting/

To read about the HSG annual conference in plain language visit:         

https://en.hdbuzz.net/295

Author Therese Crutcher-Marin

 

We Can Never Lose HOPE………..

Family, Love

What Do You Remember About Your Grandmother(s)?

I was blessed to have both of my grandmothers involved in my life and I have wonderful memories of them.  Both of my grandmothers, Christina Mary (Mages) Crutcher and Celena Barbara (Gable) McKibben were loving woman, who unfortunately, didn’t marry nice men.   

Christina Mary (Mages) Crutcher married at 17 and was a mother at 18 and her first granddaughter was born when she was 41.  What I remember about her is, she would take one of us, I have three (3) sisters, for a weekend and spoil us to death; we’d go to the movies and have popcorn and candy, play cards for hours and watch Let’s Make a Deal on TV.  These were special one-on-one time I had with her.     

Celena Barbara (Gable) McKibben had a tough life.  She and my grandfather split early in the marriage and didn’t divorce for many years.  My Grandmother had to work until she was in her late 70’s; first as a housemother to nursing students at St. Joseph Hospital and later as a companion to elderly women, living with them through the week and then living with one of her children on the weekends.  What I remember about her is, the hugs, smiles and giving us a quarter out of her little change purse when my sisters and I were going to TG&Y to buy candy.  She was a very giving, loving woman and her family was everything to her.

We Can Never Lose HOPE……….

Author Therese Crutcher-Marin