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Always On My Mind

Willie Nelson’s song, Always On My Mind, has a very different meaning to me.  Since that November day in 1978, when Lora, Marcia and Cindy told John and I about their mother having Huntington’s disease (HD), HD has been on my mind every single day.  That day was a defining moment in my life, and I would conscientiously choose to live with the threat of HD.

For many years, fear and uncertainty lurked deep inside my psyche, and I tried to hide it, especially from the Marin siblings.

Before any of John’s sisters exhibited symptoms, I was watching, noting, praying, hoping HD would give the Marin’s siblings a pass.  That didn’t happen and even though these three (3) beautiful women are gone from my sight and John has tested negative, I wake up every morning still thinking about HD. Because HD has been burned into my mind, became part of my DNA, it did one good thing, it forced me to be MINDFUL every day and that is what kept me sane; appreciating all the good things in my life.

People have said to me, “Well, you volunteer for the nonprofit, Huntington’s Disease Society of America (HDSA); that’s why you think about it”.  That’s not the reason; for 38 years, poignant grief lived in my heart and deep and poignant distress became my normal.  I watched something so horrific that it scarred my soul and the only way I can deal with it is to help HD families in my community.


We Can Never Lose HOPE…..

To know more about Therese and Huntington’s disease, Visit Therese’s Author Website .

Author Therese Crutcher-Marin


Grief, Love

Love and Loss

HDSA 2019 Convention

Most folks have opened their hearts to love whether it be love for parents, siblings, grandparents, children or a rich, deep love for another person; spouse/significant other.

When we love, we don’t think about the emotion of loss that will eventually occur when the person you love dies.  I think it’s human nature not to spend time thinking about that event.

You cannot feel the emotion of love without the emotion of loss/grief. I ask, is it worth it to love?  I believe it is.   Article: If you love you will grieve

When I married John I was scared since he had an unknown gene status for Huntington’s disease (HD), a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Alzheimers and Parkinson’s.  The disease strikes young and when a parent has HD, each child has a 50/50 chance of inheriting the mutated huntingtin gene which causes the disease. what-is-hd/overview-of-huntingtons-disease/

I knew the possible consequences of my decision, but being young, I really didn’t know how this terrible disease stole everything from someone over a 10-20 year period of time. I soon learned, as my three (3) sisters-in-law succumbed to this horrific disease.  Watching these three (3) lovely ladies, I carried a loss in my heart for 24 years.  John didn’t want to be genetically tested so I realized I could also lose him this way.

Loving John wasn’t really a choice.  I fell in love with this man and my heart couldn’t give him up so I loved deeply knowing my life could change in a blink of an eye.

To read about our love story while living in the shadow of Huntington’s disease. please see my author website:

We Can Never Lose HOPE…….

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  Beginning January 1, 2020, there will be a HDSA San Francisco Bay Area Affiliate.  Amy Fedele is the Co-Chair, I’m the Chair.  The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the SF Bay Area that has a population of 7.1 million.

My author website is:

You can read about my HD journey and the book I published, Watching Their Dance.  100% of the profits are being donated to the nonprofit, HDSA.  












Chapter 22-A Cerebral Hemorrhage

I’d like to share a very difficult time in John and my life. You’ve heard the saying, “I wish I knew then, what I know now”.  These words screamed at me for years.  They have finally silenced because I came to realize that I did what I could with the information and life experience I had at the time.

But my heart still hurts from losing my friend.

My dear friend and sister-in-law, Lora, was spiraling out of control, self-medicating with alcohol.  The threat of Huntington’s disease (HD), deep depression, unable to keep a job and her husband washing his hands of her was too much for her to bear, or really, anyone could bear.

Excerpt from Chapter 22, pg. 176 Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.  What is Huntington’s disease?

“Four days after John’s thirty-fifth birthday, the phone range about nine p.m.  My heart skipped a beat, as it had been doing whenever the phone rang.  It was someone from Mercy Hospital in Sacramento, asking in a cool, unemotional voice for John Marin, the brother of Lora Marin. John was just out of the bathroom, and my face must have been white as I handed him the phone.  ‘It’s Mercy Hospital, asking for Lora’s brother.’

He took the receiver, and it was a terrible thing to watch this strong, loving man wilt like a flower.  In a strange monotone, he said, ‘Thank you. Goodbye.’

I hadn’t realized that while John was on the phone, I’d been slowly backing away from him.  Now he was walking toward me like a robot, and I became even more frightened. My hands went over my ears to shut out the words he was going to say.  As my back hit the wall, his arms went around me like a shield. “Lora fell and hit her head.  She has a cerebral hemorrhage, and she’s in a coma.  She doesn’t have much time left.'”

I’m a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease.  Watching Their Dance is an inspirational  love story while living in the shadow of HD.  100% of the proceeds are being donated to the nonprofit, HDSA. You can find it on many book websites like Amazon.

OR on my Author Website:



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:

Book on griefGriefland

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….


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

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.



Anger, a Natural Reaction to Grief

I have to admit anger started seeping out of my pores when Cindy became symptomatic.  She was the third sister-in-law to fall prey to this monster; Huntington’s disease.  When I started noticing symptoms, I was in denial and ignored it; I didn’t even talk to John about it, but soon it was hard to disregard. As she declined, my anger got worse; I just wanted to take a baseball bat to the monster and make it hurt like I hurt.  What is HD

For those experiencing this emotion, know, anger in itself is a natural reaction to grief and loss; it’s a normal part of grief.  If you are feeling this way, please seek help from a counselor and/or attend a Huntington’s disease support group. 

Article on Grief and Loss             Article on Anger in Bereavement    3-ways-to-work-through-the-anger-stage-of-grief/

The book, Griefland is written by a friend of mine, it’s a great book, and it’s available at

Unfortunately, Huntington’s disease causes many losses to a person with the disease; i.e., loss of independence, loss of being in control, loss of a job, etc. Watching a loved one decline may cause anger issues with the care partner/family.

I feel blessed that by writing my story, it was a healing journey, I was able to release the anger I harbored toward HD.

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the profits from the book is being donated to Huntington’s Disease Society of America (HDSA).

We Can Never Lose HOPE………….

                        May is Huntington’s Disease Awareness Month

#LetsTalkAboutHD  #HDAwarenessMonth







Anticipatory & Complicated Grief

On April 14, 2008, my third sister-in-law, Cynthia Ann Marin, died of complications from Huntington’s disease.  The main cause of death was cachexia, the general ill health and malnutrition, marked by weakness and emaciation, usually associated with severe disease.  She was fifty-four years old and had fought Huntington’s disease for 17 years.

 what-is-hd/         what-is-hd/#stages       what-is-hd/#scope

For 24 years, John and I had lived with anticipatory grief in our lives; watching each of John’s sisters slowly die from the disease (1984 to 2008). Anticipatory grief refers to a grief reaction that occurs before an impending loss. Typically, the impending loss is a death of someone close due to illness but it can also be experienced by dying individuals themselves. Article on anticipatory grief:  

After so many losses in our lives, John and I became lost in complicated grief after Cindy’s death. Complicated grief is acute grief and can become a chronic a chronic, heightened state of mourning. Needless to say, I was looking for a way to begin to heal from my heartache. Article on: The difference between complicated grief and normal grief  

Stay well my friends.  My next blog will continue with the topic of grief and how I dealt with it through the birth of my book, Watching Their Dance.

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from Therese’s book sold in the U.S. will be donated to HDSA.     Last December, Therese and John donated $9,015.00 to HDSA that was the profit from book sales since Therese published in April 2017.

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When Bad Things Happen to Good People

When I was working in hospice, our bereavement counselor would offer the book, When Bad Things Happen to Good People to our hospice families.  I have read the book and it helped me cope with the grief that weighed heavy on my heart over the loss of my three sisters-in-law, Lora, Marcia and Cindy.  I love his quote, “Caring about others, running the risk of feeling, and leaving an impact on people, brings happiness.”

Here’s a short synopsis on the book:  When Harold Kushner’s three-year-old son was diagnosed with a degenerative disease that meant the boy would only live until his early teens, he was faced with one of life’s most difficult questions: Why, God? Years later, Rabbi Kushner wrote this straightforward, elegant contemplation of the doubts and fears that arise when tragedy strikes. In these pages, Kushner shares his wisdom as a rabbi, a parent, a reader, and a human being. Often imitated but never superseded, When Bad Things Happen to Good People is a classic that offers clear thinking and consolation in times of sorrow. 

If you’re trying to make sense out of a tragedy, I would recommend this book.

We can never lose HOPE………

100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to Huntington’s disease organizations around the world.

To purchase the book, please visit Therese’s website: and Amazon    B&N     Kindle     Kobo      Nook 



A Criminal Trial

I have been participating in a criminal trial for the past three weeks; the first week dedicated to choosing the jury.  Now that it is over, I HK_Central_Statue_Square_Legislative_Council_Building_n_Themis_swant to reflect on my experience.

The jury was charged with determining if the defendant, Mr. Minchak, was sane or insane at the time he brutally murdered a woman in Roseville, California ten years ago.  The defendant had a mental illness, schizophrenia. You might wonder why it has taken so long to get to this point, as I did. The man was deemed incompetent to stand trial for many years, then last year he was evaluated by a mental health professional and deemed competent. He was tried and found guilty of murder in 2015. He then pleaded insanity.

So another trial was scheduled to determine his mental status at the time of the murder.  I have to say it was very interesting and I learned much about a person with this diagnosis. We heard from expert forensic psychiatrists, psychologists, Roseville police officers, the victims husband, the defendants mother, brother and many others.  To say the least, it was an emotional experience, watching the video from the gas station, as the defendant stabbed the victim nine times and stole her money and casually tried to pump his gas. It’s the most horrific thing I have ever seen.

The jury deliberated only for about three hours, and we all agreed the prosecutor proved he was sane at the time.  When the judge read the verdict, the husband dropped his head and cried and the daughter cried out loud. As the jury stood and walked back into the jury room, most of us were crying. I believe justice has been served and I pray the Texiera family can find some closure knowing Tammy has been vindicated.

Have a good day!  Therese







Photo credit: Tim Evanson via / CC BY-SA

Family, Grief

Surviving the Heartache & Loss of Huntington’s Disease

I just read about The Empress of Ireland, Canada’s Titanic, which sank in 1914 and 365 survived out of 1,477 passengers.  I’m sure there was much urlheartache involved in this tragedy.

Surviving an ordeal, whether its treading water until someone finds you or watching a loved one slowly die, zaps your energy and strength. After the painful or horrific experience, especially a protracted one, one must live with the heartache of the people now void from your life.  John was very close to his three sisters, Lora, Marcia and Cindy, as was I, and we still miss t10011940914_5e94cc9718_chem terribly and grief is still our companion. Even though I understand grief, having worked in hospice for 10 years, it’s very difficult knowing that we will never celebrate birthdays together, sit around a table and share a thankful meal at Thanksgiving and Christmas ever again.  Caring Connections has informative information on grief and loss.

The biggest heartache for John and I is that Keith and Vanessa never knew their lovely aunts.  Lora died when they were very young and they didn’t know Marcia when she was well. They only saw her when she had been sc0009977fbeaten down by HD.  The kids loved their Aunt Cindy since she came many summers and stayed with us when they were preteens. Cindy’s last four years of her life was at Beth Shalom, a Residential Care Facility for the Elderly in Auburn where she was very ill.  Vanessa and Keith were away at college during that time and when they did come home it was hard for them to see her as it was for John and I. I know in my heart that they would have been greatest aunts had they lived!

Have a good day!   Therese

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Photo credit: Free Grunge Textures – via / CC BY