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Grief

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):

  1. HD Research Trial Finder
  2. The HD Parity Act Caucus
  3.  Get Involved with a HDSA Chapter/Affiliates
  4. Get Involved with HDSA NYA

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.

Watching the Dance Huntingtons Disease

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

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

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.

Watching the Dance Huntingtons Disease

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

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

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

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

 

 

 

 

 

 

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 sadnessTypes 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 

 

 

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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

 

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:  https://www.theresecrutchermarin.com

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: https://www.theresecrutchermarin.com

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.  

 

 

 

 

 

 

 

 

 

 

Grief

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. https://www.amazon.com/Watching-Their-Dance

OR on my Author Website:  https://www.theresecrutchermarin.com

 

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….

              

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

 https://whatsyourgrief.com/understanding-survivor-guilt/ 

https://www.psychologytoday.com/us/blog/how-be-yourself/201711/six-tips-handling-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.  https://www.amazon.com/-/e/B06ZY85776