Browsing Tag

#HDSTRONG

Family

Feeling Alone

People ask me, “Why do you donate your time to help in the fight against Huntington’s disease (HD) when it will not ever affect your family again?” 

Yes, John dodged the Huntington’s disease bullet, he didn’t inherit the mutated huntingtin gene like his three (3) sisters and mother and for that we are so grateful.  http://hdsa.org/what-is-hd/#risk

I do it because I don’t want anyone to feel alone like John and I did when Lora, Marcia and Cindy were struggling with the disease process. In the 80″ & 90″s support groups were non existent and there were very few neurologists knowledgeable about HD.

Today, there is so much support, information, and neurologists available to families so I spend much of my time on social media getting the word out.  Facebook has HD support groups you join and there are many online support groups facilitated by social workers. http://hdsa.org/osg/   http://www.hdscn.org/     https://help4hd.org/

So, don’t give up!  Help is out there!

We Can Never Lose HOPE…………….

 

 

 

About Author, Family

Knowledge is Power

In January of 1988, after Vanessa was born, John and I decided that I wouldn’t return to work and stay home for a couple of years while the kids were young.   John was making good money at Placer County, and we had money in our savings account, so I was comfortable living on one paycheck. A Walkthrough Guide to Panic Disorder  

At the time, I had two sisters-in-law, who lived locally, challenged by Huntington’s Disease (HD); Lora, severely depressed and drinking herself to death and Marcia, officially diagnosed at UC SF Medical Center two years earlier.  What is HD A few months after I resigned from my management job in Sacramento, I began having panic attacks.  John’s unknown gene status weighed heavily on my mind.  A Walkthrough Guide to Panic Disorder   

To ease my anxiety, I decided to pursue a Masters degree in Healthcare Administration.  Additional education, I felt, made me more marketable, and would replace time lost in the workforce.  I believe knowledge is power and as I studied I became confident that I would secure a job at our community hospital in Auburn, CA which I did in 1991.

The Sacramento Team HOPE Walk is Sat., Sept. 8, at the River Walk Park in Sacramento. To register or make a donation to the event, go to: http://www.hdsa.org/THWSacramento 

 

 

 

HDSA

HDSA Convention-Kickoff-June 8, 2018

Huntington’s Disease Society of America Annual Convention Continues: 

Today, Friday, is the day we begin to explore Huntington’s Disease topics  presented by experts/researchers/doctors in the HD world.  The presenters travel from around the world to speak at this convention, so I feel very lucky to be attending.

At 9 a.m., the day will begin with the Opening Keynote Speaker.

By early morning, the attendees will select the Educational Workshops they wish to attend

Please REMEMBER:  Some of the workshops will be LIVE STREAMED.  Go to:   https://guidebook.com/guide/119978/list/586374/

At noon, there will be a Community Awards Luncheon.  

The HDSA National Youth Alliance (NYA) will perform a Talent Show at 7 p.m.

 

We Can Never Lose HOPE….

 

 

Grief

Anger, a Natural Reaction to Grief

I have to admit anger started seeping out of my pores when Cindy became symptomatic.  She was the third sister-in-law to fall prey to this monster; Huntington’s disease.  When I started noticing symptoms, I was in denial and ignored it; I didn’t even talk to John about it, but soon it was hard to disregard. As she declined, my anger got worse; I just wanted to take a baseball bat to the monster and make it hurt like I hurt.  What is HD

For those experiencing this emotion, know, anger in itself is a natural reaction to grief and loss; it’s a normal part of grief.  If you are feeling this way, please seek help from a counselor and/or attend a Huntington’s disease support group. 

Article on Grief and Loss             Article on Anger in Bereavement  

Article-griefrecoverykit.com/    3-ways-to-work-through-the-anger-stage-of-grief/

The book, Griefland is written by a friend of mine, it’s a great book, and it’s available at  https://www.lulu.com/shop/search.ep?keyWords=griefland&type=

Unfortunately, Huntington’s disease causes many losses to a person with the disease; i.e., loss of independence, loss of being in control, loss of a job, etc. Watching a loved one decline may cause anger issues with the care partner/family.

I feel blessed that by writing my story, it was a healing journey, I was able to release the anger I harbored toward HD.

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the profits from the book is being donated to Huntington’s Disease Society of America (HDSA).

We Can Never Lose HOPE………….

                        May is Huntington’s Disease Awareness Month

#LetsTalkAboutHD  #HDAwarenessMonth

#HDSTRONG #HDSAFamily

 

 

 

 

The Non Fiction Book

A Labor of Love

May is Huntington’s Disease Awareness Month

When I began writing the nonfiction book, Watching Their Dance, it developed into a Labor of Love, a new expression of my love for my three sisters-in-law.  After Cindy died in 2008, I was looking for something good and positive to come out of Lora, Marcia and Cindy’s struggle with Huntington’s disease. The idea of sharing our family’s experience with HD was born out of this tragedy.  What is Huntington’s disease?

John and I both mourned the death of each of sister even before they we gone from this world because Huntington’s disease shrinks the brain and dementia and cognition problems occur.  Both Marcia and Cindy’s eyes were vacant the last years of their lives and I still tear up when I think about it.   Info on grief and loss:  https://www.centerforloss.com/2016/12/journey-grief-six-needs-mourning/ 

I worked on the manuscript for seven (7) years, learning the craft of writing, attending writing conferences, seminars and in 2015 I began working with an editor and published in April 2017.  Writing John and my story and publishing it was the most rewarding thing I’ve done in my life and I’m very proud of the accomplishment.  At the same time, it’s the hardest thing I’ve every done except for giving birth to my children, Keith and Vanessa, which also was a labor of love.  

Therese will be selling her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, at HDSA Annual Convention, June 7-9.  The book is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 100% of the profit from the book is donated to HDSA. 

Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from her book since she published in April 2017.

#LetsTalkAboutHD #HDAwarenessMonth #HDSAFamily

#WeCanNeverLoseHope #WatchingTheirDance

 

 

 

 

 

About Author

How Huntington’s Disease Has Affected My Life

May is Huntington’s Disease Awareness Month

Huntington’s disease is a fatal, hereditary brain disorder that progressively destroys the nerve cells in the brain.  It’s like having ALS, Parkinson’s and Alzheimer’s all at the same time.  There is no cure or therapy.

#LetsTalkAboutHD               #HDAwarenessMonth

#WeCanNeverLoseHOPE    #WatchingTheirDance

Therese will be selling her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, at HDSA Convention in Los Angeles, June 7-9, 2018.  The book is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 100% of the profit from the book is donated to HDSA. 

Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from her book since she published in April 2017.

HD Awareness

“House” TV Series & Huntington’s Disease

   MAY IS HUNTINGTON’S DISEASE AWARENESS MONTH!

Every now and then, you will find a Huntington’s disease patient featured on a TV show, usually in a medical oriented show/soap opera, etc.  House is one such program, and there are others.  I’ve listed the three scenario’s that appeared on House. Actor Hugh Laurie stars.   https://en.wikipedia.org/wiki/House_(TV_series) 

#1. A seemingly fit and healthy personal trainer collapses while filming an exercise DVD, but her symptoms convince House she is hiding something – and gaps in her medical records increase his suspicions. Meanwhile, Thirteen begins a clinical trial for Huntington’s disease as her nerves begin to degenerate.      http://www.huntingtonsdiseasefoundation.org/ 

#2. The grumpy medic treats a 16-year-old girl who collapsed at her school’s Christmas pageant. He determines her liver is failing, but cannot fathom why. Meanwhile, Foreman and Thirteen grow closer during the trials for the Huntington’s disease drug.  https://www.wehaveaface.org/ 

#3. A man suffering chronic and severe pain makes an unsuccessful attempt to commit suicide. The grumpy medic agrees to take up his case, but is himself racked by intense pain in his leg. Thirteen receives help from Foreman while taking part in his Huntington’s disease clinical trial.  http://www.hdsa.org 

I’m really glad Huntington’s disease has come out of the closet; it’s another neurodegenerative disease like Alzheimers, Parkinson’s, ALS but there seems to have been a stigma attached to the disease.  http://www.neurodegenerationresearch.eu/about/what/ 

We Can Never Lose Hope……………………

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from Therese’s book sold in the U.S. will be donated to HDSA.  http://www.hdsa.org     Last December, Therese and John donated $9,015.00 to HDSA that was the profit from book sales since Therese published in April 2017.

#LetsTalkAboutHD

#HDAwarenessMonth 

Therese-Author

May is Huntington’s Disease Awareness Month

What Huntington’s Disease Awareness Month Means to Me

May is Huntington’s Disease Awareness Month, a cause I believe in. So what is Huntington’s Disease What is HD?   Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain.

The month means a lot to me because:  

May is when many of the HD organizations in the U.S., come together to promote one idea, Huntington’s Disease Awareness.  Help4HD International, Huntington’s Disease Foundation, Hereditary Disease Foundation, We Have A Face, HDSA, The World in HD, join forces, in an unofficial way, and publicize the month using different marketing strategies.  With differences put aside, we share a common goal of heightening HD awareness.

During this month, and since there is power in numbers, Huntington’s Disease information is seen on many social media platforms that leads to easier accessibility of resources by Huntington’s Disease families that are critical to caring for their loved ones. John and I felt so alone when we were caring for his three sisters, who had Huntington’s Disease, in the ’80’s, 90’s and early 2000 since there were no resources available.

May is when I get to participate in HDSA Northern California Chapter Annual Convention/Education Day, and, with TEVA Pharmaceuticals educational grant, the Chapter is fortunate to offer it free to  families.  At the convention, I’m privileged to meet folks who are bravely fighting Huntington’s Disease, and their carepartners who are lovingly caring for a child, spouse, mother, etc.  

May is the month I remember Lora, Marcia and Cindy in everything I do for the Huntington’s disease community

May is the month I give thanks for John’s negative test results (2016) and how our children do not have to live a life at risk for Huntington’s disease. 

We Can Never Lose Hope…………………….

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from Therese’s book is being donated to HD organizations around the world.

 

HDSA Northern California Chapter

May is Huntington’s Disease Awareness Month

Yesterday, HDSA Northern California Chapter held its Annual Huntington’s Disease Education Convention supported by a grant from TEVA Pharmaceuticals.  The grant helps the Chapter to continue the HDSA Mission:  To improve the lives of everyone affected by Huntington’s disease.            http://www.tevapharm.com/ 

The Chapter loves to offer the Convention to the HD community in May because:

May is Huntington’s Disease Awareness Month!  

It was a fun, positive, informative day for the attendees and the Board of Directors are thrilled with the turnout.   http://northernca.hdsa.org/ 

Here’s some statistics on the day.

Registered online:  187+ 22 vendors/speakers
 
Workshops & number of attendees:
Managing behaviors:                60
Advocacy and Clinical Trials:    31
At-risk Discussion:                     6
HD and the family:                    12
Yoga:                                           5
(Total 114)
HD 101 (genetic testing):                              36
Gene Positive: now what?:                           30
Increasing your support system:                  40
Advanced directives and power of attorney:16
(Total 122)
      My table at the Convention                Heidi Ramos, Amy Fedele, Katie Jackson
                

Therese will be selling her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, at the convention.  The book is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 100% of the profit from the book is donated to HDSA. 

Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from her book since she published in April 2017.

HDSA Northern California Chapter

May is Huntington’s Disease Awareness Month

     The HDSA NorCal Chapter Convention is Tomorrow, May 5th.

For those who live in Northern California, and would like information on Huntington’s Disease, the NorCal Chapter will host it’s 2018 Annual Convention/Education Day.   What is HD?   It’s free & lunch is provided.  Please register at:

 http://northernca.hdsa.org/about/norcal-chapter-convention-2018

In the morning, the Convention offers nine (9) workshops to chose from.  10 a.m.-11 a.m. Session 1; 11:15 a.m.-12:15 p.m. Session 2:

  1.  Managing the Behavioral Aspects of HD
  2. Advocacy and Clinical Trials
  3. At Risk Discussion Group
  4. HD and the family: Relationship Changes and Talking to Children
  5. Yoga
  6. HD 101 and Genetic Testing
  7. Gene Positive: Now What?
  8. Increasing Your Support System
  9. Advanced Directives and Power of Attorney

12:15 lunch will be provided and at 1:00 we will assemble in the Main Auditorium.

Dr. Vicki Wheelock, MD, UC Davis will speak about recent research and other news regarding Huntington’s disease.

The address is UC Davis Health Education Building at 4610 X Street, Sacramento, CA.  Hours: 9:30 am to 3:30 pm.    We HOPE to see you there! 

Therese will be selling her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, at the convention.  The book is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 100% of the profit from the book is donated to HDSA. 

Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from her book since she published in April 2017.