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Family, Love

Alzheimers-Another Neurodegenerative Disease

Unfortunately, I now have experience with two (2) neurodegenerative disease; Huntington’s disease and Alzheimers.       

Author Therese Crutcher-Marin

What is Alzheimers       

What is Huntington’s disease

My family celebrated my father, James Keith Crutcher’s, 91st birthday on November 9th at Almond Gardens, a Residential Care Facility, where he now lives. Last year, the family noticed, that he was forgetting things, wasn’t keeping up the house and when he told us he wanted to move to a senior apt. complex that offered congregate meals, we moved him quickly.

I stayed a week with him in his new apartment to help with the transition.  I soon discovered, since I haven’t lived with my dad since I was 19, that he had dementia. He took many falls at the apt. after I left and had a subdural hematoma and had to have brain surgery.  He survived and John and I brought him to our home to rehab.  For (4) months, with the help of home health, he improved physically but mentally we saw a decline.  In August, he was diagnosed with Alzheimers; another cruel brain disease.

Alzheimer’s has quickly attacked my dad and my heart breaks as I watch my father slip away.  And now because of COVID-19, we cannot even visit.  I pray that one day he will not wake up and can be with my mother again in the heavens above.

We Can Never Lose HOPE…

 

 

 

 

Family, Love

What Do You Remember About Your Grandmother(s)?

I was blessed to have both of my grandmothers involved in my life and I have wonderful memories of them.  Both of my grandmothers, Christina Mary (Mages) Crutcher and Celena Barbara (Gable) McKibben were loving woman, who unfortunately, didn’t marry nice men.   

Christina Mary (Mages) Crutcher married at 17 and was a mother at 18 and her first granddaughter was born when she was 41.  What I remember about her is, she would take one of us, I have three (3) sisters, for a weekend and spoil us to death; we’d go to the movies and have popcorn and candy, play cards for hours and watch Let’s Make a Deal on TV.  These were special one-on-one time I had with her.     

Celena Barbara (Gable) McKibben had a tough life.  She and my grandfather split early in the marriage and didn’t divorce for many years.  My Grandmother had to work until she was in her late 70’s; first as a housemother to nursing students at St. Joseph Hospital and later as a companion to elderly women, living with them through the week and then living with one of her children on the weekends.  What I remember about her is, the hugs, smiles and giving us a quarter out of her little change purse when my sisters and I were going to TG&Y to buy candy.  She was a very giving, loving woman and her family was everything to her.

We Can Never Lose HOPE……….

Author Therese Crutcher-Marin

 

Family

Happy Birthday to My 91 Year Old Father-James Keith Crutcher

Happy Birthday to my my father, James Keith Crutcher, who was born at home on Saturday, November 9, 1929 in Kansas City, Kansas. 

Grandmother, Chris Crutcher

I love you dad, and I’m blessed to have you in my life for all these years.

From what my Grandmother Chris Crutcher told me, who gave birth to my dad having just turned 18 two weeks prior, that it was a very difficult birth.  My father would be an only child until his sister, Trina, was born when my dad was 18. (Same parents)

John and I named our son, Keith, because I always told my parents, if I had a son, I would give him dad’s middle name.  My parents had four daughters.

   

Jim, Trina & Ellen

I sure HOPE I have his genes.  My grandmother, Chris Crutcher, lived until she was 102 and lived independently until the last eight months of her life.   

We Can Never Lose HOPE…………..

 

 

 

Family

Phyllis Iva (Cahoon) Marin & Huntington’s Disease

MAY IS HUNTINGTON’S DISEASE AWARENESS MONTH  #LetsTalkAboutHD

Phyllis Marin

My mother-in-law, Phyllis Iva (Cahoon) Marin, who I never met, had Huntington’s Disease (HD).  What is Huntingtons disease

Phyllis & Cindy

John and his sisters, Lora, Marcia and Cindy don’t know a lot about her, their father never discussing her with them.  So, I too, know very little but here’s what I do know.

She was admitted to Napa State Mental Hospital around 1950 on a part time basis.  At that time she had two babies, Lora and Marcia, and she could not care for them.  The doctors did not know what was wrong with her, and because she came home, she had two more children, Cindy and John.  When Cindy was born, she was given to John’s Aunt Adeline and when John was born he was given to his Aunt Connie because Phyllis was unable to care for four children under the age of five.

Lora, Marcia & Cindy

Lora and Phyllis

She died in 1968 of strangulation as she got tangled up in the restraints the hospital had on her because her chorea was so bad.  The underlying cause of her death was stated to be Huntington’s Chorea.  History of Huntington’s Disease

This is such as sad story, but not unusual as Huntington’s disease family stories are always heartbreaking.

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

My Author Website  https://theresecrutchermarin.com

Family

Happy Mother’s Day to Mom’s Around the World

Many years ago I didn’t think I would be a mother.  With the threat of Huntington’s Disease and John’s unknown gene status, deciding whether to have our own biological children or adopting was a huge question in both of our minds.

After about a year of discussing and checking out adoption, John said to me, “Therese I will leave it up to you.  If you want to adopt or if you want us to have our own children, I’ll go with what you decide”.  Having the decision power given to me, didn’t make it any easier.

I made my decision after I talked with my Grandmother McKibben.  She shared her thoughts with these words that I had heard before.  “You never know what going to happen in life”.  Those were the words that had sent me back to John when I left the relationship because of Huntington’s disease.

I have been blessed in so many ways, and one is being a mother to our two terrific children, Vanessa and Keith. Everyday I give thanks that I made the decision to have our own kids.  In 2016, John tested negative for HD, for which we are grateful, and because he doesn’t carry the mutated HD gene, our kids do not have to live a life AT-RISK.   

We Can Never Lose HOPE……… 

 

Family

Merry Christmas

From John and myself. 

Have a wonderful Christmas with family and friends.  

We Can Never Lose HOPE

Family

Christmas Memories

We are just a few days away from Christmas and memories of Christmas past come flooding into my brain.

I found a few pictures from my childhood and posted them, they’re black & white which really shows my age.  I reminisce as I look at them and they bring a smile to my face.

Growing up, my parents always listened to the  Ray Conniff Christmas record.  I bought that same record, a few years back, only as a CD and it sure brings back memories as I listen to it.

Have a wonderful Holiday Season with Family and Friends.  

To listen to the Ray Conniff Christmas record, visit:  https://youtu.be/27lOcKkmXYM

Merry Christmas to All and to All a Good Night.

My mother holding me during my first Christmas

Me with older sister, Ellen

Christmas in 1976 when John and I were in college

Family, Huntington's Disease

More About Social Security and Huntington’s Disease

In a previous blog, I wrote about Social Security Disability Insurance and the difficulty Huntington’s disease (HD) families experience when applying for benefits and how for a HD family, who might have two (2) or more family members struggling with the disease, disability dollars are essential for their financial survival.  https://hdsa.org/find-help/healthcare-and-future-planning/disability-chat/

Applying for Social Security:  https://hdsa.org/find-help/healthcare-and-future-planning/disability-benefits-and-hd/disability-support/

I know a family in town where multiple members are struggling with HD; mom and three (3) adult children who have Juvenile Huntington’s disease.  The father/dad, a physician is still working, and is the caregiver for his loved ones at home.  To have disability benefits for these four loved ones is, no doubt, helpful.

Another family challenged by HD is the O’Donnell Family. A film by Rae Maxwell and produced by HDSA, Her Mother’s Daughter, introduces the world to Kathi O’Donnell and shows the devastating impact that Huntington’s disease (HD) & juvenile Huntington’s disease (JHD) has had on the O’Donnell family. The film is a window into Kathi’s inspiring journey as a caregiver as we see the different stages of HD & Juvenile Huntington’s disease – a rare form of HD that progresses more rapidly than adult onset.

To watch the film, click here. https://youtu.be/zXfDJ2aW4hw

We Can Never Lose HOPE……

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  As of January 1, 2020, a HDSA San Francisco Bay Area Affiliate will begin operating.  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.  

 

 

 

Family

Genetic Information Non-Discrimination Act-GINA

In 1988, when two of my sisters-in-law, Lora and Marcia Marin were struggling with Huntington’s disease (HD), I became obsessed with increasing John’s Life insurance.  He was employed by Placer County and as a manager he received a free $50,000.00 life insurance policy. What is HD

To protect my family and to lower my anxiety, I felt $50,000.00 was inadequate, because of John’s at risk status for HD, and set my sights on securing a private life insurance policy for John.

Well, I wish GINA had been established at that time because I applied to ten (10) Life Insurance companies and John was denied by all of them.  The Genetic Information Non-Discrimination Act (GINA) created new protections against the misuse of genetic information by health insurance companies and employers.  Go here for FAQ’s about GINA.  what-is-gina-and-when-does-it-take-effect

I remember the question that was on the applications that was the cause the denial:  “If a parent is deceased, what was the cause of their death?”  I wrote, “Huntington’s disease”.

We Can Never Lose HOPE……..

             

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is available on Therese’s author website https://www.theresecrutchermarin.com and many book websites like Amazon

 

Family, Forgiveness, Hope, Kindness, Mindful, Thankful

A New Year Has Begun

Happy New Year  To My Fellowman Around The World!

On this day, the beginning of the new year, I want to take a moment to be thankful, and to remind myself to continue having forgiveness & hope in my heart, and to keep kindness and mindfulness in my everyday activities.

2019 is here and what a great year 2018 was for my family as my father is healthy at 89 years old and my sisters and children are also healthy and happy.  It has been a joyous year for the Huntington’s disease community; with the positive outcome of Ionis HTTRx drug and Genentech/Roche moving quickly to setup clinical trials around the world for the now HG6042 drug. Ionis HTTRx program and its future

My sister, Jen, and our dad

John & our children & their spouses

To learn about Genentech/Roche plan, click below on video.

We Can Never Lose HOPE…….

 

Therese is the author of Watching Their Dance, an inspirational love story while living in the shadow of Huntington’s disease.  It can be purchased on her Author Website or Amazon  

100% of the profit from the book is being donated to the nonprofit Huntington’s Disease Society of America (HDSA). December 2017, she donated $9,015.00 to HDSA which was the profit from 2017 book sales.