This statement may seem ridiculous given the statement I’ve created for Huntington’s disease (HD); “the cruelest disease on the planet”. I have not changed my mind regarding the statement but HD transformed my way of thinking, in a positive manner, really, without me even knowing it. WhatisHD
After I’d made the decision to marry John, who had an unknown gene status for HD, I realized, in order to not lose my mind with worry, I had to retrain my brain; first, to learn how to live in the moment. how-train-your-brain-think-differently
I learned to embrace what I had right in front of me; John, our love for each other, the life we were building together, and the hopes and dreams we hoped to achieve.
I learned not think too far ahead and what that might mean because nobody has a crystal ball; for my sanity, this moment, this day is what I focused on.
I didn’t learn these things overnight; it took time to transform my way of thinking since I’m a planner, a very detailed planner.
Like a caterpillar’s transformation into a butterfly, it takes time to relearn how to think.
Melissa Billardi, HD advocate, Founder, President, CEO of HD Support & Care Network, offers a weekly call insupport type group. It is on Thursdays on See Me HD Group Call at 1:00 pm PT/4:00 pm ET Join from computer:https://PMDAlliance.zoom.us/j/769346544
Or Telephone: Dial: +1-408-638-0968 (US Toll) Or +1-646-558-8656 (US Toll) Meeting ID: 769 346 544
Melissa’s Facebook page and HD Support & Care Network website:
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
The nonprofit, Huntington’s Disease Society of America (HDSA) continues to regularly update information on research and advocacy. Consider signing up for the HDSA newsletter. It contains a wealth of information. http://hdsa.org.
Perhaps you are wondering about Right-to-Try legislation for Huntington’s disease patients who are end stage. HDSA provides a summary of the topic.
On its face, the idea behind Right-to-Try legislation is to allow families access to medications and treatments still in the clinical trial phase when an individual has no other treatment options left and is facing a terminal illness. Right-to-Try legislation focuses on cutting red tape in the Food and Drug Administration (FDA) to allow easier access to these experimental treatments. But, in reality, the FDA isn’t the issue. Access to investigational therapies is already permitted through the Food and Drug Administration’s expanded access program. FDA currently approves 99.7% of all expanded access requests submitted by physicians and companies for patients with immediately life-threatening illnesses who cannot participate in clinical trials. Removing FDA from the process of obtaining investigational drugs, as Right-to-Try proposes, increases the risk of patient harm and creates confusion. When access to an experimental drug or treatment is denied, it’s almost always because the request has been denied by the pharmaceutical company, not the FDA.”
At this time all Expanded Access and Right-To-Try requests to Roche will be denied. This was discussed in the recent HD Community-wide letter that was released by Roche in June. Specifically, they said “We understand that families may wish to seek access to investigational medicines as soon as possible. However, access to RG6042 can only be through clinical trial participation at this time. Because the benefits and risks of RG6042 are not fully understood, we are not able to grant pre-approval, compassionate use or “right-to-try” requests. The company Roche/Genentech
I post quite often about KINDNESS on my personal Facebook Wall, as a reminder to myself and others. Every Monday, John and I volunteer at a local Homeless Center to help and show kindness to those who are less fortunate than us. I am humbled by these folks I interview because of their strength and resilience. Many of them did not choose to be homeless; bad choices, drugs, alcohol lead them down a slippery slope and, for many reasons, they are unable to change their situation.
The picture of the young man is a client I usually interview on Monday’s. I won’t mention his name for privacy reasons. He did allow me to take his picture and share some things about himself and some of his goals.
He recognizes he has a problem with alcohol, wants help because he knows where the alcohol will ultimately lead him. He used to be married, has several children, has set a goal to be sober and to reconcile with his ex-wife and work towards gaining visitation rights again.
When I don’t see him, I become concerned and I pray he is okay. After our volunteer day on Monday, John and I usually talk at dinner about the day. When I bring up this young man and my concerns, John says, “We can only do so much, Therese.” And, in my mind I know that, but my heart says something different.
I believe we learn best through stories; whether the story is shared orally, in writing, theatrically, artistically through many mediums, painting, film, architecture, glass, ceramics, etc.
“Stories have power. They delight, enchant, touch, teach, recall, inspire, motivate, challenge. They help us understand. They imprint a picture on our minds. Want to make a point or raise an issue? Tell a story.” — Janet Litherland
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 http://www.theresecrutchermarin.com and many book websites like Amazon
The last 10 years of my healthcare career was in Hospice at Sutter VNA and Hospice in Auburn California. “Hospice is specialized type of care for those facing a life-limiting illness, their families and their caregivers. Hospice is quality of life and living each day as fully as possible.
I’m not a clinical person, I faint at the sight of blood, but empathy is my middle name. As the Hospice Support Services Supervisor, I lead a Community Outreach Committee, recruited and trained hospice volunteers that I placed in a family’s home, developed & implemented a marketing plan each year, supervised the CBAG program (Children’s Bereavement Art Group) and the local hospice thrift store that I started from ground up.
Cicely Saunders, founder of Hospice.
Every November was an exciting time for the Outreach Committee because it afforded us the opportunity to reach out to doctors and the community to help them understand the benefits of hospice care.
Grief is as individual as you are. We are all unique, having had different life experiences that make us who we are.
So, I think it is safe to say, each of us will undergo a different grief experience. There are no rules set in concrete regarding Grief. In other words, there’s no certain way to grieve, or a certain time when you should be over it and no certain time to move on.
A few tips to help when you are grieving:
Express yourself. Talking is often a good way to soothe painful emotions. …
Allow yourself to feel sad. It’s a healthy part of the grieving process.
Keep your routine up. …
Eat healthily. …
Avoid things that “numb” the pain, such as alcohol. …
If you are interested in finding a local bereavement support group, look up a hospice program because they offer support groups you can attend free of charge in the community.
I grieved my three (3) sisters-in-law who died of complications from Huntington’s disease for many years. It was not until I finished writing John & my story & publishing the nonfiction book, Watching Their Dance, did I feel like I had dealt with my grief and found peace.
Trey Gray, a famous drummer, and his friends held a special evening at the Vegetable Buddies establishment in South Bend Indiana http://buddiesdtsb.com/ last October. The band hosted a concert, and because of his notoriety, Trey raised $50,000.00. These dollars are being donated to the nonprofit Trey started in 2015, the Huntington’s Disease Foundation.
The Huntington’s Disease Foundation was founded in 2015 by co-founders Trey Gray, Doug Michael and Anett Pappas. The Foundation is recognized and registered in Texas as a 501 (c) (3) non-profit charity. The Huntingtons Disease Foundation
To watch the television news report regarding Trey’s concert, please click on link below: