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Huntington’s Disease: Part III, Now You Know, What Can You Do?

September 28, 2015

Part III of III. Read the previous posts:

Huntington’s Disease – Facts, Not Fiction, about the “Worst Disease Known to Mankind”

Huntington’s Disease: Losing Karen

That’s my story.

At least part of it. It is not unique. It rings with elements of other stories from other families all around the world.

My life has been spared. More importantly, my children are not doomed to endure the anguish my brother and I experienced. My husband will not watch my mind deteriorate and fade. For me, the chapter on fear and waiting has closed.boys

But with that closure, a new door opens. An opportunity to speak out. An opportunity to use my words to increase awareness, motivate the world to action, and a cure. Thank you, to the hundreds of you who have stopped by this week to read and share. Thank you for sharing my story. 

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There are 30,000 people in the United States living with HD right now and 200,000 more are at risk. There are thousands more families dealing with Alzheimer’s, Parkinson’s, ALS, and cancer.

No doubt there is someone in your life (if not now, then soon) who is loving or caring for someone with dementia or degenerative illness. But what can you do? Here are few simple things done for us that made a difference.

Put it in writing. I cannot begin to describe what an impact a simple note makes, arriving in the mail and conveying the message: “I see you. I see you are hurting and I ache with you in your pain.” I remember vividly one such note, with ladybugs on a yellow background, from someone at church I admired but barely knew. To be seen in the midst of our family’s suffering, to have that silent empathy, gave me such encouragement.

Help them to remember. A friend from high school came up to me at church one Sunday and handed me a blank journal. With tears in her eyes, she told me: “I don’t know what I would do if I lost my mom. Here is a place for you to write down everything that she was, so that you will never forget.” That journal was passed among my mother’s friends, its pages filled with sweet memories I am now able to share with my children of the grandmother they never knew.

Sometimes saying nothing is best. When things with Mom were really bad, when she was angry and abusive, and I was barely holding it together, the casual hallway “How are you holding up?” was too big a question to answer (unless you wanted all of my pain and anguish to spill out onto the carpet and your shoes). A wordless hug, sometimes, is better than saying anything at all.

Remember the children. Our children were not fully aware of what we were going through, and even what they knew, they didn’t fully understand. Offers from friends to keep the kids or take them fun places were such a gift. It meant so much when we knew our little ones were able to have fun even while we dealt with the hardest facets of an adult life.

Click to Tweet: Know someone caring for a loved one with dementia or degenerative illness? What you can do: http://wp.me/p1rxDn-1FY @HDSA #HuntingtonsDisease

Share the story. Spreading awareness increases our hope for a future for the thousands at risk. A cure for Alzheimer’s or Parkinson’s will benefit HD research and vice versa. Check out your local chapter of HDSA. Join Team Hope in your area and walk to support those currently suffering from this disease. Get familiar with the research that’s going on, and follow websites and social media accounts committed to spreading the word. Consider a donation. Use your social media and share.

RightRelevance.com @HuntingtonsRR

HDAwareness.com @HDAwareness

Huntington’s Disease Society of America @HDSA

WeHaveAFace.org @WeHaveAFace

Above all else, pray. Pray for a cure. Pray for an end. Pray for stamina, wisdom and endurance. We hang our courage on the hope that there will be an end to all suffering one day. Until that day comes, we wait, we love, we hold each other up, and we hope.

What’s your story? Feel free to post here.

Have other suggestions on how to get involved and what others can do to help? Share them!

Previous posts about my personal experience with HD.

On Death, Joy, and Tattoos

What Not to Pray (Unless You Really Mean It)

The Waiting: On Fear, Friendship and Snorkeling

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The conversation continues!  For more insights and resources about living a shiny, abundant and beautiful life, join me over on InstagramPinterest, or Facebook

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10 Comments leave one →
  1. pastordt permalink
    September 28, 2015 5:31 pm

    A truly beautiful series, Adelle. Thank you.

  2. September 30, 2015 9:08 am

    I love it.. So happy for your Negative result.. My son has JHD and when I saw your beautiful kids before I read your results my heart sank 😦 I love your writing.. I am your newest fan ❤

    • September 30, 2015 9:15 am

      Tina, my heart aches for you. It has been hard to grab hold of my future when so many others don’t have that luxury. Praying for a cure, for your son, for my brother, and my niece and nephew who are at risk. Big hugs to you, thank you for reading! Stay in touch, please!

  3. amy dudrey permalink
    January 29, 2016 4:46 am

    Thank you for speaking for us, Lost my fil last year , my hubby is negative thank god for my children and grandchildren sake, his brother is positive . stage 2 at 46 😦 i hate huntingtons, its such an ugly disease.

    • January 29, 2016 7:36 am

      I’m so glad your family will be spared, and I’m so sorry for what HD has already cost you. Blessings! Thanks for stopping by.

  4. Rebecca Munroe permalink
    January 29, 2016 4:44 pm

    Another heart wrenching HD story…my mother passed away from HD 15 yrs ago. My oldest sister passed away at 51 after 5 yrs in a nursing home. One of my brothers and baby sister are now being tormented by HD. My prayer is for strength, patience, wisdom and a cure!

  5. January 29, 2016 8:12 pm

    My mother died when I was 5 in a nursing home. I met her once. She was in a wheel chair smoking and shaking uncontrollably. I remember sitting on her lap. Then I remember the funeral. That’s it, that is all I have of my mom. I am told she was sick when I was born and had no idea she was having me. My first 18 months of life I was in and out of the hospital for malnutrition until the army made my dad send myself, my 2 sisters, and brother away. We were all separated and sent to live with family. My dad remarried when I was 6 and his wife was somehow jelous of a dead woman. We, my sister amy and i, we’re never allowed to ask about my mom. I never knew what she looked like until I turned 18 and my step mom left. My aunt mailed me a lot of pictures. None had me in them. I did recently find one picture of us all together but it is the only one. My oldest sister who would be 51 this year started showing signs when I was in high school. We knew it had got her. Still unable to talk about it my other sister and I were never really educated about it. My oldest sister died in 2002 at the age of 36. My mom was 35 as was her mom before her. My aunt, her sister, lived longer but was in bed and had a feeding tube and was sedated. My brother was killed in a car accident in 1989 when he was 19 so we will never know about him. I got tested in 2005 and my results came back negafive. All I could say was my mom was looking out. I had already had 2 daughters who were 7 and 5 before I really knew much. After my sister died however I really started researching and learning. It was a hard decision but the right one for me. My sister who had HD had a daughter and she has chosen not to be tested. She is 30 now and we see no signs so we are pretty positive. My only sibling left has not been tested either but she is 40 this year so we are confident she is ok. We really thought we had finally whipped it in our family and then my cousin called and said he had it. He also has 3 children. I wish on everything that I had that someone could fix it. I so wanted to win the billion dollar lottery so finally someone could get some attention on this and get some funding for it.

  6. Jeanine Zeltmann permalink
    January 30, 2016 5:13 pm

    Thank you!

Trackbacks

  1. Huntington’s Disease – Facts, Not Fiction, about the “Worst Disease Known to Mankind” Part I | Adelle Gabrielson
  2. Huntington’s Disease: Losing Karen, Part II | Adelle Gabrielson

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