Have a glass of wine and experience a relaxing, gentle PI-YO (pilates/yoga) class. You deserve it. Kat Fillare, pilates instructor, and Amanda Strewsbury, yoga instructor, will lead you through a calming hour and a half.
While you enjoy you will be helping in the fight against Huntington’s disease (HD); a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimer’s at the same time. A child with a parent with HD have a 50/50 chance of inheriting the mutated huntingtin’s gene that causes the disease.
During this unprecedented time, we need to be gentle with ourselves. We have never experienced a pandemic and it has caused us to suffer many losses that we don’t even recognize.
Please take time to ponder about your losses. Having to shelter in place, we have a loss of community because we’re working from home and not going to work and interacting with co-workers. We’re not going to the gym, going out to dinner with family and friends. When we acknowledge these losses we must be gentle with ourselves. Stress and coping with the coronavirus from the CDC
Author Therese Crutcher-Marin, HD Advocate
Grief is the normal process of reacting to a loss. The loss may be physical, social, or occupational. Emotional reactions of grief can include anger, guilt, anxiety, sadness, and despair. Grief is expressed in many ways and it can affect your emotions, thoughts, beliefs, physical health, sense of and identity and relationships.
We Can Never Lose Hope…
My author website where my blog is generated from https://theresecrutchermarin.com To receive my weekly blog, go to the website and signup. I’ll send you the first chapter of my nonfiction book, Watching Their Dance, a poignant remembrance of a love forged in crisis.
Definition of Denial. “The action of declaring something to be untrue.”
I must admit, at times, I lived in denial. Denial isn’t a bad place, only if you stay there forever, but for me, that place gave me solace for a short time. Article on Denial: mayoclinic.org/healthy/denial
When situations became unbearable, that is where I sought to be. When Lora died because of Huntington’s disease (HD), when Marcia had a stroke because of Huntington’s disease, when Cindy was diagnosed with Huntington’s disease, I went to my special place, denial, to regroup, gather strength and recharge. What is HD? https://hdsa.org/#
To be present and help my three sisters-in-law have the highest quality to their life, for as long as possible, escaping to my denial place helped me cope and face another day.
The nonfiction book I published was written in Lora, Marcia, and Cindy’s honor. 100% of the proceeds are being donated to the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against the cruelest disease on the planet. Author website: https://www.theresecrutchermarin.com
Stress is part of our lives whether Huntington’s disease (HD) affects your family or not. I’m always on the look out for tips on managing stress, especially before we knew John’s gene status for HD. We are grateful and thankful for his negative status; he tested in 2016. What is Huntington’s disease
Here are five (5) things you should know about stress:
Stress affects everyone. Some people may cope with stress more effectively or recover from stressful events more quickly than other.
Not all stress is bad. Stress can motivate people to prepare or perform, like when they need to take a test. Stress can even be life-saving in some situations.
Long-term stress can harm your health. Health problems can occur if the stress response goes on for too long or becomes chronic.
There are ways to manage stress. The effects of stress tend to build up over time. Find ways to help deal with stress.
If you’re overwhelmed by stress, ask for help from a health professional. http://www.nimh.nih.gov Nat’l. Institute of Mental Health Publication #OM 16-4310
This blog is continued from December 4th blog on CAREGIVING
6. Don’t ignore your emotions
Pay attention to your own feelings and emotions, and seek counseling if needed. Vent feelings to trusted family members or friends.
7. Take time for yourself
Use relaxation or stress management methods such as meditation, visualization and yoga. Books and videos are available to guide you in these techniques.
8. Read, pray or meditate for at least 15 minutes a day
My 102 yr. old Grandmother Chris Crutcher. My Aunt Trina & 2 cousins looked after her.
Consume daily prayer books and helpful magazines like Today’s Caregiver and Caring Today, or books such as Chicken Soup for the Caregiver’s Soul to uplift your spirits. If you’re religious, seek the counsel of a spiritual leader you trust and respect.
9. Chuckle more often
Laugh, reminisce and share stories of happy times.
10. Ask for help
Friends, family and religious groups may be eager to assist and are only waiting to be asked and directed. Doing everything yourself deprives others of an opportunity to serve.
In 1999, John’s second sister, Marcia, was stolen from us by Huntington’s disease (HD). She was 49 years old, had struggled with HD for 15 years and we had been by her side through those years.
On New Year’s Day, 2000, Cindy’s best friend called and asked John to take Cindy back to California to live with someone because HD was progressively rapidly. The next day, John jumped on a plane to Canada, packed Cindy’s stuff and Kayla, her dog, and flew back to California where she would live with her father.
The next week, John bought home a book to share. The book was, Don’t Sweat the Small Stuff…..and it’s all small stuff by Richard Carlson, PH.D. John and I started reading a chapter a couple of times a week before we went to sleep. (Short chapters) Each chapter rebooted my brain to focus on the present, not the past or the future. #LiveMindfully
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
Do you have a color that soothes and relaxes you? I’ve loved purple since I was a little girl and when I wear it, it makes me happy. When John and I got married in 1980, my bridesmaids dresses were a soft lavender shade. It’s hard to find purple in woman’s clothes, so when Vanessa, my daughter, and I shop, we’re both on the look out for anything purple. My Aunt Trina sends me Lavender chamomile body wash and lavender mist spray to put on my pillow at night
When I made a conscious decision to marry John, despite his unknown gene status for Huntington’s disease (HD), I knew full well the possible consequences of my decision. I was only 23 at the time, very naive, and didn’t really understand the ramifications of this horrific disease. HD is a fatal, genetic disorder that progressively destroys the nerve cells in the brain. There is no cure. http://www.hdsa.org
With the 50/50 chance of inheriting the disease, I knew, based on statistics, that at least two (2) of the four (4) Marin siblings would carry the mutated huntingtin gene. Who is at risk: http://hdsa.org/what-is-hd/#risk
But, what I didn’t realize, was that it would be so hard, so emotionally depleting, so sad in so many ways.
My advice to those struggling with a challenging issue, like Huntington’s disease, is to:
Talk to a counselor
Talk with your primary care physician about anti-depressants
Attend a support group that addresses the issue
Have open communication with family
And never lose HOPE
Two good articles to help you through tough times:
Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
This HDSA group is open to caregivers to a loved one with HD who does not have access to an in person group because of distance, time constraints or whatever. If it is easier for you, please register. The group will meet monthly with a changing leader and changing members due to expanded geography. To sign up: https://www.supportgroupscentral.com/join_as.cfm?cid=27
We Can Never Lose HOPE………...
I will be selling my nonfiction book Watching Their Dance at the HDSA Annual Convention in Los Angeles this week. HDSA is receiving 100% of the proceeds.
Since John and I retired, we have traveled in our 5th wheel umpteen times, across the U.S. and back in 2010, and seen beautiful country. We almost missed this unusual canyon near Page Arizona. Luckily, we over heard a family talking about it in a fast food joint and decided to stay the night and do the tour the next day. Unfortunately, there wasn’t a campground nearby, so we became trailer trash and stayed in the Walmart parking lot .
Antelope Canyon is on Navajo land east of Page and it was formed by erosion primarily due to flash flooding over the centuries. Our tour guide was a cheerful native gal whose grandmother discovered the canyon.
The Navajo name for Upper Antelope Canyon is Tsé bighánílíní, which means “the place where water runs through rocks.” Lower Antelope Canyon is Hazdistazí (advertised as “Hasdestwazi” by the Navajo Parks and Recreation Department), or “spiral rock arches.” Both are located within the LeChee Chapter of the Navajo Nation.
Put this on your bucket list, because it’s amazing!