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Love

Living With an Unknown Intruder

Our lives are full of unknowns, from the day we are born into this world it all becomes a journey. There are many quotes about the unknown: i.e. “The unknown is always frightening.” “The challenge of the unknown future is so much more exciting than the stories of the accomplished past.” “You must be fearless to travel on the journey of unknown”.

Living not-knowing is hard. The unknown intruder, Huntington’s disease (HD), moved into our home in 1978 when John and his three (3) sisters discovered their mother had HD. The unknown intruder would show its ugly head in 1984, 1986 and 1994 as each sister-in-law fell prey to HD.

I chose a life of uncertainty, allowing the unknown intruder in our home, which opened my heart to love more deeply, and knowing John could fall prey to the intruder at any time, made my life richer.

We Can Never Lose Hope…

July 5, 2023 by crutcht

Family, Love

Under Love Is A Stronger Emotion

I’ve been involved with the Huntington’s disease (HD) community for many years and I have witnessed the resilience, courage and love within HD families. I believe the emotion, Under Love is a Stronger Emotion is Devotion. (love, loyalty, or enthusiasm for a person, activity, or cause)

Huntington’s disease is grueling, heart breaking, a stressful condition for any family to bear. HD families are devoted to their loved one, as John and I were to my three sisters-in-law, Lora, Marcia and Cindy. It comes down to, “that’s what you do for the people you love”.

Two local families, the Miller and Granlund, who I personally know, have shown their love and devotion to their dad/spouse for years. The Miller and Granlund children, recently stepped up and formed a new committee, the HDSA San Francisco Bay Area Chapter HDSA National Youth Alliance (NYA) in honor of their fathers. NYA is a collection of children, teens, and young adults from across the country that motivates young people to get involved in their local HDSA Chapters, Affiliates, and Support Groups.

We Can Never Lose Hope…

March 22, 2023 by crutcht

Love

I Took A Risk For LOVE

Every day families around the world are confronted with challenges in their lives; a devastating Huntington’s disease (HD) diagnosis, a cancer diagnosis, a challenging medical diagnosis, an autistic child, a miscarriage, a significant death, divorce and many other threats. I don’t know of a family that has not had one at some time in their life. With that said, I took a risk for LOVE with my then boyfriend John, who I ultimately married, with an unknown gene status for Huntington’s disease. I decided that I was willing to take that risk because I believed, “Love that ‘endures all things’ is love that hopes in the face of circumstances that often seem dark”.

John and I had dark times, walking beside Lora, Marcia and Cindy, John’s three sisters, on their HD journey for over 24 years. Plus, living at risk for HD is stressful and can challenge a relationship, but John and showed the world that love can conquer any hardships, difficulties, and challenges.

We Can Never Lose HOPE…..

To read John and my love story while living in the shadow of HD, read my memoir, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family at Risk for Huntington’s.

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

January 25, 2023 by crutcht

Love

FY23 OMNIBUS APPROPRIATIONS PACKAGE FAILS HUNTINGTON’S DISEASE FAMILIES

I am angry and I’m going to do more in 2023 to get the HD Parity Act passed!

Statement from the nonprofit, Huntington’s Disease Society of America (HDSA).

New York, NY, December 20, 2022 – Once again, Congress has failed to take action to ensure that families affected by Huntington’s disease (HD), a devastating brain disorder that impacts more than 200,000 American families, have uninterrupted healthcare coverage. The FY23 Omnibus Appropriations Package, which will be voted on later this week, does not include provisions of the Huntington’s Disease Parity Act (S. 868, H.R. 2050) which would eliminate the two-year waiting period for Medicare coverage and Social Security Disability Insurance (SSDI) benefits for those who qualify for federal disability because of the serious progression of their Huntington’s disease.

For HD-affected families, congressional inaction has real consequences. Families affected by HD will continue to have to brace themselves for two years without medical care in a system that puts their needs at the bottom of the congressional priority list. Two years is too long for someone disabled by their incurable neurological disease to suffer without medical coverage, and Congress could close this loophole for relative pennies on the national budget.

Unfortunately, despite 12 years of advocacy, HD families will continue to suffer federal neglect and wait for the Medicare and SSDI systems to support their health needs. HDSA will stand by them and support them until appropriate care and a cure is available to all.

December 26, 2022 by crutcht

Grief, Love

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…..

December 14, 2022 by crutcht

Caregiving, Love

Honoring Huntington’s Disease Caregivers During November

November is National Family Caregivers Month, a time to recognize and honor family caregivers across the country.

Author Therese Crutcher-Marin

As a former caregiver to my two (2) sisters-in-law who had Huntington’s disease, Marcia and Cindy Marin, there was contentment, and sadness, in caring for these two ladies that I loved. My personal goal was to honor their dignity, keep them independent and comfortable as long as possible. The sadness I felt was heartfelt watching them slowly lose everything, their independence, unable to work, unable to do activities of daily living; bathing or showering, dressing, getting in and out of bed or a chair, walking, using the toilet, and eating.

Caregivers who care for Huntington’s disease (HD) loved ones have a huge challenge; HD’s journey is long, 10-20 years. The neurodegenerative diseases, HD, ALS, Parkinson’s, Alzheimers can stretch out for years.

This takes a toll on caregivers so caregivers must take care of themselves. The reality is, if you as a caregiver become ill, stressed where you cannot take care of your loved one, what happens to them?

This blogs main purpose is to provide a link to HD Caregiver Support Groups. They are online so easily accessed. Here are a couple coming up.

We Can Never Lose HOPE…..

I’m a Huntington’s disease (HD) advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author. 100% of book sales is donated to the nonprofit, HDSA.

Amazon link- Watching Their Dance

November 16, 2022 by crutcht

Huntington's Disease, Love

Brain Tissue Donation Helps Huntington’s Disease Research

To foster cutting-edge Huntington’s disease (HD) drug discovery research, there is great need for brain donations from HD families. A brain donation is a gift of knowledge that is essential to enhance the understanding of HD. Although deciding to become a prospective brain donor can be difficult, signing up is a simple process. Any person 18 years of age or older can complete the “Brain Donation Registration.”

One driving force behind research on the human brain is the availability of human brain tissue. A brain donation is an invaluable gift anyone can make to further how researchers understand the brain and different diseases that affect it, like HD. Learn more about brain donation on Huntington’s Disease Society of America’s website, here.

To Register as a Brain Donor: Visit the HBTRC website, email [email protected], or call 800-BRAIN-BANK (800-272-4622) for more information.

My two sisters-in-law, Marcia and Cindy, both chose to donate brain tissue to Harvard Brain Bank after they died. They both were altruistic and wanted to help find a cure for HD even though they would not benefit from it.

To watch a session on Brain Donation at the HDSA Annual Convention last June, visit https://youtu.be/J5O8VEd-jww

We Can Never Lose Hope…….

October 5, 2022 by crutcht

Love, The Marin Siblings

The Rememberer Role for Lora, Marcia & Cindy Marin

Today is the last day of May 2022, Huntington’s Disease Awareness Month

Author Therese Crutcher-Marin

Every year during Huntington’s Disease (HD) Awareness Month, my thoughts focus on my three (3) sisters-in-law, Lora, Marcia and Cindy, who died from HD complications.

I am Lora, Marcia and Cindy’s Rememberer, one who remembers, a precious role that I have embraced for the rest of my life. I remember them in many ways; I write blogs about them, volunteer for the nonprofit Huntington’s Disease Society of America, I penned a book to create their legacy, our family talks about them often and every night before I go to sleep, I pray there will be a therapy/cure for this horrific disease in my lifetime.

Lora, Cindy, Marcia Marin

Please help the nonprofit, Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate fight this disease by donating to fund research, two (2) HD clinics at Stanford and UCSF Medical Center, three (3) local HD support groups, online support groups, and many free online resources.

Thank you in advance. Please Make your donation here.

We Can Never Lose HOPE…

May 31, 2022 by crutcht

Caregiving, Love

Late Stage Huntington’s Disease and Hospice

May is Huntington’s Disease Awareness Month

In late stage Huntington’s Disease (HD), individuals require assistance in all activities of daily living; dressing, toileting, bathing, eating, walking and getting out of bed or a chair. Although they are often nonverbal and bedridden in the end stages, it is important to note that people with HD seem to retain some comprehension. 41,000 American’s are symptomatic and approximately 200,000 live at risk of inheriting the mutated huntingtin gene that causes the disease.

The last ten (10) years in my health care career, I worked in hospice at a small hospital in Auburn CA. Hospice care is a special kind of care that focuses on the quality of life for people and their caregivers who are experiencing an advanced, life-limiting illness.

My two (2) sisters-in-law, Marcia and Cindy were on my hospice program (10 years apart). For the last four (4) years of their lives, they resided in a residential care facility in Auburn; the last two (2) years in bed needing total care. They received wonderful care from the nurse who owned the facility and having hospice overseeing their care gave John and I so much comfort.

My advice to HD families caring for their loved one is to make it clear to the doctor that you want hospice care when appropriate. When the hospice program receives the referral from the doctor, they will make a visit and evaluate your loved one and admit him/her to hospice care.

Kaiser Hospice Santa Clara Ca

Stanford Medicine Hospice

UCSF Medical Center

We Can Never Lose Hope…….

May 26, 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

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