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Grief

Huntington’s Disease – Grief During The Holiday Season

Author Therese Crutcher-Marin

As some of you know, I call Huntington’s disease (HD), the cruelest disease on the planet. It’s the Holiday Season, a time we celebrate with family/friends and, it can be a difficult time for HD families who have lost loved ones. When I see obituary’s on folks who have passed away from a complication of Huntington’s disease in the holidays, my heart aches for the family. (I’m also sad when it’s not the holidays)

During the holiday season, whether it was a recent loss or one that occurred some time ago, feelings of grief can be heightened and may seem enormous. Griefland by Thomas Nadelin (book on grief)

Experts on grief suggest we remember, new memories does not erase old memories. These memories are precious and can bring comfort to the difficult time. Also, because we LOVE, grief is the price we pay. It is a huge price paid! (it’s not something we think of when we fall in love with someone, or our love for son’s, daughter’s, mothers, fathers, friends, etc.)

We Can Never Lose HOPE…..

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author. Visit my website and learn about HD: https://theresecrutchermarin.com

December 14, 2022 by crutcht

Caregiving, Grief, Love

To the Hobbs Family On The Loss Of Bryan To Huntington’s Disease

I want to express my sincere condolences to the Hobb family after losing Bryan to Huntington’s disease on April 5, 2022. The Hobb’s family has posted on Facebook their loss over losing their dad and the wife, Deb, over losing the love of her life, Bryan. They are truly a family that loved this man deeply.

I met Deb Wilson-Hobbs in April 2017 at the Help 4 HD convention in Elk Grove, CA. I had just published my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, and Katie Jackson, President of Help 4 HD, allowed me sell my book at the event. (the profit I made that day from book sales, I donated to Help 4 HD)

I remember sitting at the table at the convention and Deb walking by. She stopped to look at the book and asked what it was about. I said “it’s my husband and my love story while living at risk for Huntington’s disease (HD)”. Story is the key word, because she looked at me and said, “why do I want to read your story when I have my own”? Even though I said, “100% of the profit from the book sales today is going to Help 4 HD, and from then on to Huntington’s Disease Society of America (HDSA), it didn’t matter and I totally understood where she was coming from.

That year, I was visiting all the HD support groups in Northern California and I saw Deb again at the Chico group. Then in 2019, Deb and her family, organized a HDSA Team Hope Walk in Chico, CA where they lived. John and I attended to help with the event and they raised $8,000.00, I believe, and I got to meet Bryan. It was a lovely park and the local news came out and interviewed Deb and her family.

We Can Never Lose Hope…….

April 27, 2022 by crutcht

Grief, The Marin Siblings

Enormous Sadness

Sadness is an emotional pain associated with, or characterized by, feelings of disadvantage, loss, despair, grief, helplessness, disappointment and sorrow.

My husband’s family has a history of Huntington’s disease; a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers simultaneously.

When each of my sisters-in-law, Lora, Marcia and Cindy, began to exhibit symptoms of Huntington’s disease (HD), twitches, deep depression, unsteady gait, personality changes, a wave of sadness settled deep in my heart. As I watched Lora self-medicate and be deeply depressed, as Marcia’s co-workers thought she was drunk, as Cindy became unable to give correct change to customers, I recognized that John, myself and the sister were starting down a long, unpredictable, rocky road called Huntington’s disease.

I carried the enormous sadness deep inside my heart, keeping it in check, never allowing it to raise its ugly head. But, as each sister-in-law fell into the grips of HD, my heart became so heavy I almost couldn’t breathe. The sadness I carried found a way out through symptoms I experienced; i.e. panic attacks so severe I carried a paper bag with me, nightmares, insomnia, cry’s bubbling out of me into night that my pillow was unable to muffle.

Fortunately, I found my way to a wonderful local psychologist I saw once a week that, with her expertise, calmed the pressure cooker sadness I carried in my heart.

We Can Never Lose HOPE…..

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author. Visit my website: https://theresecrutchermarin.com

November 9, 2021 by crutcht

Grief, Love

Prolonged Grief Disorder

My father and me in 2018

During the pandemic, my sisters and I lost our father. Because we live in an unprecedented time, holding an in-person Celebration of Life for him was difficult to plan.

Experiencing this loss has lead me to explore grief once again. I have written several blogs, in the past on grief and the many kinds of grief that people can experience.

Each individual loss is unique and so is the type of grief they will struggle with; normal, anticipatory, complicated, chronic, delayed, distorted, cumulative, prolonged, exaggerated, and nine (9) others. Please see article on types of grief.

After reading the above article, prolonged grief disorder, has become apparent to me that my father had been suffering from this type of grief. My mother died in 2006 after a sudden diagnoses of brain cancer that metastasized from her lungs. (she never smoked a day in her life)

After that loss, my father was never the same. Some would say, after 54 years of marriage, the other half of him was taken and he would never feel whole again. My father’s symptoms of this kind of grief was that he could never enjoy himself, he felt guilty that he was still here and she wasn’t. He grieved silently and grief incapacitated him from going places, reaching out to people. My sisters and I always felt he was deeply depressed.

So, my plea to you is to be kind and gentle to people who have experienced a recent loss or a loss of many years. Everyone grieves differently and there is no time time frame on grief and remember, if you love, you will grieve.

We Can Never Lose HOPE…

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author. Visit my website: https://theresecrutchermarin.com

Please make a donation to the nonprofit, Huntington’s Disease Society of America, to help fight HD.

September 7, 2021 by crutcht

Grief, HD Advocates

Channel Your Grief Into Action

Author Therese Crutcher-Marin, HD Advocate

I was blessed to have worked the last 10 years of my career in a local hospice program that allowed me to truly help my neighbors. Grief, of course, was an emotion our patients experienced and part of our mission was to provide comfort to the bereaved.

The Huntington’s disease community, unfortunately, is suffering from three types of grief: anticipatory grief, pandemic grief and grief from two promising clinical trials that were halted.

Genetech roche-drops-huntingtons-disease-trial-with-once-promising-drug-tominersen/and

Wave Life Sciences news-release-provides-update-phase-1b2a-precision-hd.

So, let’s Channel our grief into Action! We are HD STRONG!

Each one of us can CHANNEL our GRIEF into ACTION. The following are suggestions of ways to get involved with the nonprofit, Huntington’s Disease Society of America (HDSA):

There are other Huntington’s disease organizations you can be involved with:

Help 4 HD-.Help 4 hd

Huntingtons Disease Foundation

We Can Never Lose HOPE………….

I’m a HD advocate, Chair for HDSA San Francisco Bay Area Affiliate, an author and a blogger.

Visit my website at: https://theresecrutchermarin.com

100% of the proceeds from my book, is donated to the nonprofit, HDSA.

April 8, 2021 by crutcht

Grief

Huntington’s Disease Community Lives With Three Layers of Grief

Author Therese Crutcher-Marin, HD Advocate

Working the last ten years of my healthcare in Hospice, I saw how strong of an emotion grief is after losing a loved one.

I married into an Huntington’s Disease family (HD) and while I worked in Hospice, I had first hand experience with Anticipatory Grief when caring for hospice patients and in my personal life. There are many HD families who have for years cared for a loved one, and who live with anticipatory grief because the HD prognosis is 10-20 years. What is Huntington’s Disease

So what is Anticipatory Grief? When a person or family is expecting death, it is normal to begin to anticipate how one will react and cope when that person actually dies.

How to deal with Anticipatory Grief

Over the past year, Huntington’s Disease families have been shrouded in three (3) types of grief: anticipatory grief, pandemic grief and grieving the halting of the tominersen clinical trial and WAVE PRECISION-HD trials that do not support further development of WVE-120102 and WVE-120101. These drugs held great promise to stop the progression of this cruel disease.

My plea to HD families is to reach out and not isolate yourself. HDSA has online support groups and many online resources to help your family. HDSA Locate Resources

HDSA Support Group Center: HDSA supportgroupscentral.com/groups

We Can Never Lose HOPE….

I’m a HD advocate, Chair for HDSA San Francisco Bay Area Affiliate, an author and a blogger.

Visit my website at: https://theresecrutchermarin.com

100% of the proceeds from my book, is donated to the nonprofit, HDSA.

April 6, 2021 by crutcht

Grief, HD Clinical Trials

Unfortunate News Regarding Two Clinical Trials Halted on Huntington’s Disease Drugs

Author Therese Crutcher-Marin

Dear Huntington’s Disease Community.

It’s been a very sad week for the Huntington’s disease community around the world with the halting the clinical trial on the Roche/Genentech drug tominersen. To read the press release, click here: https://hdsa.org/wp-content/uploads/2021/03/Tominersen-programme-update-Community-letter.pdf

Then yesterday, March 29, 2021, WAVE Life Science announced the decision to discontinue development of WVE-120102. To read the press release, click here: https://hdsa.org/wp-content/uploads/2021/03/HD-community-letter_PRECISION-results-final.pdf

As we grieve the loss of these once promising drugs, we must stay strong. Remember, the HD community is

#HDSTRONG

and

WE CAN NEVER LOSE HOPE……

I’m a HD advocate, Chair for the HDSA San FranciscoBay Area Affiliate , a writer and a blogger.

Visit my website at https://theresecrutchermarin.com

March 30, 2021 by crutcht

Grief

The Grief Of A Nation-The Loss of Our Loved Ones

A year ago, like all Americans, we were living a normal life, working, going to the gym, picking up our children at school, going on vacations. During this time my 90-year-old father, James Keith Crutcher, was showing signs of dementia, forgetfulness, an unsteady gait, and, unbeknownst to my sister and me, taking many falls in his home.

Thus began the rapid decline of my father’s health and the anticipatory grief that was growing in my heart. At the same time, COVID-19 was spreading like wild fire, the American people were quarantined and the number of Americans dying increased daily.

This week, America reached 500,000 deaths, and counting, from the Coronavirus, and we are a nation in deep grief. I mourn the loss of my father and at the same time, the loss of 500,000 American’s.

Last Monday, the United States of America took time to recognize the loss of our loved ones for which I’m grateful.

My father died on December 13, 2020 after taking a bad fall and breaking his neck. Unfortunately, he had to have surgery, or be paralyzed from the neck down. Because of the pandemic, my family couldn’t be with my dad when he was in the hospital. We got him home with hospice care and he died three days later.

I pray with time, our nation can recover from all we have lost and heal from this devastating COVID-19 pandemic.

We Can Never Lose HOPE…..

Author Therese Crutcher-Marin

I’m a Huntington’s Disease Advocate, the Chair for the Huntington’s Disease Society of American San Francisco Bay Area Affiliate, a blogger and an author. My website is https://theresecrutchermarin.com

February 24, 2021 by crutcht

Grief

The U.S. Is Living In Perpetual Grief

Author Therese Crutcher-Marin, HD Advocate

Since the pandemic began, last March, I have watched the news every morning and I’ve become obsessed with the growing number of deaths in the U.S. As I’ve watched the number grow from one day to the next, my heart hurts for loved ones who died alone in a hospital.

Over the past few months, the Lester Holt on NBC has coined a new phrase; perpetual grief; indefinitely long-continued perpetual sadness. Types of Grief and Loss

For ten months, as the death rate rose, we could not see this pandemic ending. Now there is light at the end of the tunnel with the vaccines being rolled out. I’m grateful we can see the end but I still get up in the morning and look to see how many died the day before and I feel I’m still living in perpetual griefland. Goodreads.com “Griefland”

Grief is real and can affect your health if left unchecked. Grief increases inflammation, which can worsen health problems you already have and cause new ones. It batters the immune system, leaving you depleted and vulnerable to infection. The heartbreak of grief can increase blood pressure and the risk of blood clots. How to Cope with Physical Symptoms of Grief

We Can Never Lose HOPE……

Huntington’s disease (HD) families are already living in anticipatory grief when a loved one is struggling with HD. Perpetual grief is just another layer of grief for families on top of the sadness of having Huntington’s disease in their family. What is Huntington’s Disease

January 11, 2021 by crutcht

Grief

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 . https://www.theresecrutchermarin.com

Author Therese Crutcher-Marin

April 15, 2020 by crutcht

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