Five years ago, in December 2015, John and I visited the HDSA UC Davis HDSA Center of Excellence to start the process to learn John’s gene status for Huntington’s disease. Mara Sifry-Platt, genetic counselor recorded family history, Dr. Vicki Wheelock physically examined John and a psychiatrist evaluated his mental health.
John and I had lived with HOPE since 1979, when Lora, Marcia and Cindy, discovered their mother had Huntington’s disease and they each had a 5/50 chance on inheriting the mutated huntingtin gene.
On January 16, 2016, after a six (6) week wait for the results, John and I sat anxiously in a room at UC Davis Center of Excellence holding hands. We held our breath as Dr. Wheelock gave us the answer we had hoped for. John was negative!!!!!It was the happiest day of our lives!
Anita Dominguez and Denny Cone, HDSA Pacific Regional Officer and Staff, have thrown down the gauntlet challenging Chapters/Affiliates, in the region, to see who can recruit the highest number of new volunteers in six weeks beginning January 18th, 2021.
The challenge for a Recruitment Blitz may be focused on one specific volunteer need for Teams, Sponsors or Participants or it could be all encompassing to recruit for all areas of Team Hope Walk. Recruitment for volunteers to work on Committees and to fill board positions are also important to the Chapters/Affiliates. About the Pacific Region
The San Francisco Bay Area Affiliate team members accept the challenge and are busy planning the strategies to win this challenge! In California, the SF Affiliate extends from Santa Rosa to Gilroy, including the city of San Francisco, Oakland, and San Jose.
Even though we can’t, or shouldn’t, celebrate the birth of Christ with family and friends, I believe it’s a small price we pay to heal the world from the COVID-19 pandemic. This is a sacrifice we, as human beings, do for one another.
I’m reminded that, as human beings, we all share the same sadness, the same hopes, the same potential. The pandemic has showed us how interdependent we are: what happens to one person can soon affect many others, even on the far side of our planet.
John and I are staying home for Christmas, like we did for Thanksgiving, even though we’re dying to see our children and friends. I’ve taken to remembering Christmas’s past with family and those memories will get me through this Holiday season.
The pictures are of from 2018 Christmas in Cortona Italy with Family.
I’m sharing a story about a friend who purchased Huntington’s Disease Society of America (HDSA) Amaryllis Holiday Kits and sent them to her family to stay connected during the holidays. The amaryllis commonly symbolizes strength and determination. The Huntington’s disease (HD) community has adopted this flower to represent hope and celebrate the advancements in HD research. HDSA Annual Event
HD is a rare, fatal, genetic brain disorder that has symptoms of ALS, Parkinson’s and Alzheimers synonymously and there is NO CURE. What is HD
The bulbs are bringing fun and connectedness to the ladies in her family at this somewhat isolating holiday time. She ordered 7 bulbs and mailed them to San Diego (2 nieces), Modesto (2 sisters), Colorado (daughter), near Fresno (daughter) and she kept one. They all planted on December 1 and named their bulbs. (One is Minnie, one is Amy, etc. One is even Pancake because it sits on a shelf next to the pancake mix.)
Every Sunday they measure the heights of their stalks, send each other a picture, and the race is on! The bulb owner who ends up with the tallest stalk when there is a full bloom is the winner of a Cold Stone gift card. They are finding it amazing how different the growth patterns are when they all were planted at the same time.
My friend feels her family challenge is a bit silly – but they are having great fun staying connected over the holiday in this way. She is already telling herself to remember it for next year again!
We Can Never Lose HOPE……
Thank you to my friend for supporting HDSA in the fight against his horrific disease and finding a unique way to connect with loved ones.
My father, James Keith Crutcher, is now gone from my sight. On December 13th, 2020, he got his wings and flew to heaven to be reunited with my mother, Rita, the love of his life. He was 91 years old and he will be greatly missed by his children, grandchildren, Trina his sister and other relatives.
Through this experience, I’m reminded that when we LOVE, we will experience tremendous grief when losing that person.
If you don’t open your heart to love, you will never know grief because grief and sorrow are the price we pay to LOVE. The death of someone you LOVEis one of the greatest sorrow that can occur.
Through the years, I’ve lived with the fact that I betrayed John when the Marin family discovered their mother had Huntington’s disease (HD). What is HD
John and I were college sweethearts, graduating from college and planning our lives together. I turned by back on the relationship because I was scared, confused and didn’t feel that I was brave enough to live with this huge uncertainty in my life.
Betrayal is the breaking of a trust, or confidence that produces moral and psychological conflict within a relationship amongst individuals. I definitely was conflicted in my mind and heart when I betrayed John. My mind said, “You can’t live with the unknown”, and my heart said, “Take a chance. He’s the love of your life…..be with him”.
Ultimately, I found my way back to John and embraced life with him and I have never regretted it. John was the only Marin sibling out of four that did not inherit the mutated huntingtin gene. We are forever grateful.
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.
This Thanksgiving will not be like any Thanksgiving ever before. The culprit is COVID-19, the pandemic that we have been struggling with for most of 2020.
With that said, my family, Keith, Fran, Vanessa, Scott and my sister’s family have decided to all stay home. Fran is six (6) months pregnant and it’s just not worth it because we certainly don’t want her to COVID-19. We will look forward to 2021 Thanksgiving and the addition of our first grandchild.
It’s no doubt, we will remember this Thanksgiving for a long time.
I remind myself often, that even though it’s been a challenging time for our nation, I have many things to be thankful for; my family, democracy in our nation, friends and my health.
From my family to yours, I hope you and your family have a wonderful, peaceful Thanksgiving.
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.
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.