Browsing Tag

#familyiseverything

Joy And Sorrow Coexist In Our Lives

As a result of being human, joy and sorrow coexist in our lives for the reason that it is unavoidable. Through the years and during dark times, I have gained a better understanding on how to balance joy and sorrow. I see life as a mixture of sorrow and joy that allows us to experience life to its fullest extent.

I believe we humans can feel both ends of the spectrum when missing people that we loved and who are gone from sight. I have learned to be open to joy when it arrives, to take it in through my senses and appreciate it, with the knowledge it is a visitor that comes and goes.

Lora, Cindy, Marcia Marin

I had the joy of knowing Lora, Marcia and Cindy, awesome women, who I had so much fun with for years. Sadly, Huntington’s Disease took them and I was deeply affected by the sorrow my heart felt. After John tested negative for the mutated huntington gene that causes Huntington’s disease (HD), and publishing a memoir, the sadness lifted and I was able to begin working with the nonprofit, Huntington’s Disease Society of America (HDSA) to help improve the lives of everyone affected by Huntington’s disease and their families. #letstalkabouthd

We Can Never Lose Hope…

May 17, 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

The Marin Siblings, Watching Their Dance

Marcia Wasn’t Angry But I Was

My sister-in-law, Marcia Louise Marin, was the kindest and most unassuming woman I have ever met. After high school, in 1968, Marcia got a job in the typing pool at Pacific Telephone in the financial district of San Francisco. Marcia advanced in her job quickly to become a professional marketing rep who demonstrated to new businesses how to use their telephone system. She was a stunning, sheek, professional woman who I admired.

Unfortunately, she was struck down by Huntington’s disease (HD) at a young age, and watching her decline was very difficult for me. Needless to say, Huntington’s disease angered me for cutting Marcia’s life, her independence, her career short and leaving John, Keith, Vanessa and myself at age 49.

When Marcia died from HD complications in September 1999, John and I held a Celebration of Life at Lassila Funeral Chapel in Auburn California. At the Celebration, I spoke or really choked on my words to remember Marcia. The following paragraph is an excerpt from Chapter 31, page 257 of my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.

“Marcia was one of the sweetest people I’ve ever known. How I wish her life had been different. We supported her through the years, dealing with delicate subjects and situations. She was such a sweetheart, always giving us a look of gratitude that tugged at our hearts. I watched her with awe and wonder, because she never complained or uttered words of anger. She never cursed God for her fate and accepted her destiny.”

We Can Never Lose Hope……

February 1, 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

Therese-Author

Fond Memories of Christmas Past

As we approach Christmas Day, a sacred day when Christ was born, I reminisce about the years growing up in a Catholic community and wonderful memories of Christmas with my cousins, aunts, uncles.

My family were staunch Catholic’s and St. Pius X parish, in Mission Kansas, was our community. My two sisters, Ellen, Julie and myself attended elementary school there. Every year during the Christmas season, a huge manger scene was set up in the vestibule with a padded kneeler. I have a picture from 1966, that was in the local newspaper, with my mom and my older sister, Ellen, kneeling at the nativity scene.

“Angels We Have Heard on High” is wonderfully sung and orchestrated in this video,

History of St. Pius X

St. Pius opened on May 27, 1955. On January 27, 1956, St. Pius X School opened its doors to 290 students. Fr. Glowacki served St. Pius X to 1971. (I attended St. Pius from 1961-1969 and I was scared to death of Fr. Glowacki)

FROM MY FAMILY TO YOURS……..

December 21, 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

Therese-Author

A Surprise Discovery On A Scotland Trip

On a recent awesome trip to Scotland with my daughter, Vanessa, we discovered information on John’s mother, Phyllis Iva (Cahoon) Marin’s heritage.

Phyllis Marin

John knew very little about his mother’s side of the family, only that she was Scotch Irish and Huntington’s disease (HD) had been in the Cahoon family for generations.

Here is what happened in Scotland. We flew into Edinburgh, Scotland, took a bus tour around the city and outlying areas. The guide shared history of each area and about half way through the tour, he said, this is the land, Loch Lomond, of the Scottish Clan, Colquhoun (Cahoon).

Colquhoun is a surname of Scottish origin. When the Colquhoun family immigrated to America, in the early 1800’s, I think, the spelling changed to Cahoon.

Every clan in Scotland has a tartan: Tartan (Scottish Gaelic: breacan [ˈpɾʲɛxkən]) is a patterned cloth consisting of criss-crossed, horizontal and vertical bands in multiple colors. Here’s a picture of the Cahoon tartan, the crest and a small book on “The Origins of the Clan Colquhoun and Their Place in History”.

I purchased the Colquhoun wool scarf and pin for John, Keith, Vanessa, Fran and myself.

We Can Never Lose Hope…….

August 10, 2022 by crutcht

HD Advocates

A Workshop for Folks with Huntington’s Disease, Their Family & Caregivers

Join us on Thursday, July 14, 6-7:30 p.m., for an online workshop on fostering trusting relationships and improved communication with medical personnel, hosted by Dr. Kae Bendixen.

The workshop is intended for people with Huntington’s Disease (HD) and their caregivers and support networks. Topics will include preparing for medical visits, addressing communication challenges unique to HD, giving voice to patient and caregiver needs and fostering collaborative relationships with medical personnel. Structured communication tools designed specifically to meet the needs of people with HD will be provided to attendees and discussed at the workshop. The workshop will also include time for questions and discussion.

To register for the July 14 workshop, please visit: https://hdsa-org.zoom.us/meeting/register/tZcuf-qqpzgoHdIQ30icg8YJDaO3l7wh1FeS. Space is limited!

Information about the Presenter:

Dr. Kae Bendixen is a retired physician from the San Francisco Bay Area. She has been diagnosed with HD. She comes from an HD family and has experience as a primary caregiver for her mother. She worked as an obstetrician/gynecologist for over twenty years and has professional experience in medical ethics and teaching medical professionals how to improve their communication with patients.

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. In the picture, I’m with Jay Denhart-Lillard, secretary/communication committee leader for the SF Affiliate.

July 6, 2022 by crutcht

Fundraising

Come Walk With My Family to Raise Funds to Fight Huntington’s Disease

I invite you to come walk with my family at the Huntington’s Disease Society of America (HDSA) San Jose Team Hope 10K Timed Run & 5K Walk this Saturday, June 18th at Campbell Park; address E Campbell Ave & Gilman Ave, Campbell, CA.

Dollars raised will fund local Huntington’s disease (HD) clinics, one at Stanford & the other at UCSF Medical Center, research, HD support groups and many free online resources.

Please Register Here: https://sanfrancisco.hdsa.org/events/san-jose-5k-team-hope-walk-10k-run

Record Timing is donating his services and will time the 10K runners. The top three (3) runners will receive a medal. Pick up your bibs on Friday, June 17th, from 5-7 p.m. at the Campbell Sports Basement.