23 #UpliftHD Posts
177 More to Go!
Facebook – Frances Saldana 22-Dec
Never give up hope for an HD Treatment. And while we wait for a treatment, cherish every day with our loved ones … and that means having patience, compassionate, and never-ending challenges to give them the best possible care.
Facebook – Marie Salvaggio Clay 22-Dec
Not allowing HD to get the best of me. My daughter has HD. Lost my husband to HD and see symptoms in my other daughter and 2 of my grandkids. I advocate and volunteer to help others. Caring for my elderly mother in NY while my daughter with HD is in Virginia with her fiancé and their son. That’s a challenge for me. God will get me thru this.
Facebook – Pastors David Darla Newbold 22-Dec
Being a caregiver I have to have faith! Spend time for myself and know when to ask for help!Dave has faith, paints, draws, plays guitar and does alot of walking outside. He loves his horse spirit…
Facebook – Stacey Succop 18-Dec
I would highly encourage everyone to reach out to their local HD communities and care groups! I contacted HD Reach around 7 years ago and finding this supportive group and network changed my whole outlook on HD. Knowing that there are others who understand and want to help is priceless. #UPLIFTHD
Facebook – Amber Smith 17-Dec
We were hit by the disease out of now where. We had never heard of it before. Then my husband’s mom was diagnosed. We knew as soon as we started researching that my husband had it. I am not usually a person who is afraid or timid. I deal with things head on. If there is a problem, I attack it. We have been through a lot. More than I can post here. This terrified me though. There was nothing I could do to stop the pain and changes my husband was facing. Things would never get better, only worse. It derailed all our dreams. It has taken time to learn to cope better with the new reality. One that is constantly changing. I got mad at God, but have come back to a place of knowing that He is good and works all things together for the good of those who love Him. He is our rock, our hope, our joy, our purpose, our strength, the source of our love, and the one who sustains us. My husband is my hero. We have been together 22 years. He never asked “why me”. He never questioned God. He doesn’t complain. He is kind and loving, even in the middle of extreme pain and a future that would paralyze most. God has been gracious and provided us with great friends and given us new ways of seeing things. We love more, bicker less, let the little things go and try to never miss an opportunity to enjoy life. We are more attentive of our future. We have tried to prepare with wills, insurance, a home, more college for better job opportunities for me. I have had the opportunity to work with children with multiple disabilities. That experience has helped me remember how blessed we have been for so long with good health. Many of the children I have worked with are born in pain and will live their whole life in pain. Many can not and never will be able to walk, or feed them selves, or live independently. Yet, they have value and add so much joy and richness to the lives of those who know them. Their smile lights up a room and makes a person’s day. When my husband and I got married my dad asked me if I remember the old show Fantasy Island. I did. He asked if I remembered what they said at the beginning of every show. All I remembered was the actor who would say, “De plane, de plane!” My dad laughed at that and said that what the main character always said was, “Smile everyone, smiles.” He told me to remember to smile when the tough times come. That is what we try to remember as we face this disease. There is a song titled, “Questioning the Notion” by Daily Planet and it has been a comfort to me.
Facebook – Sarah Egner 29-Nov
Today is the day #UPLIFTHD HD has had a profound impact on my life. Watching how the disease takes a toll on each family member and care giver has made me so thankful for each day of health. It also had made me a kinder, more caring person knowing how short this life can be, and not to take the small things for granted.
Facebook – Haley Parsons 25-Nov
We took mama to go see her brother today 💜 Even though they both have that ugly awful disease called Huntington’s they still understand and are able to show love. Isn’t that what life’s about anyway?!? Spreading love! If you listen really close brother says I love you back to mama and blows her a kiss! Happy tears were flowing today y’all! #UpliftHD
Facebook – Rise Up For Huntington’s Disease #riseupforhd 12-Dec
#UpliftHD My personal statement about Huntington’s Disease.
What you don’t know about Huntington’s Disease? I mean if you google Huntington’s disease tons of information pops up. But, what some people don’t know is that not only does HD hurt,disable,and more to the person with the disease. It also effects the people who are so lucky to be the closest to them emotionally. It’s so painful to watch someone you LOVE loose parts of their brain that helps them from thinking rationally. They loose empathy, they loose so, so much. It takes a strong person to have JHD/HD but, it also takes a strong person to be by their side! The people who cheer them on and lift their spirits. I am alone sometimes with thoughts and feelings and I know other people who walk in the same shoes I do. I am not saying I am strong at all. I will always love this person no matter what from the day this person told me “hey by the way I have Huntington’s disease” over the phone. I stopped this person and said” You are not Huntington’s disease you are a human being who I love and respect you will always be you in my eyes.” because, I know the good in them, I know the person is inside a broken shell. I know the person IS and still can be an amazing wonderful, loving person. This person helped me learn about what real Love is , friendship, communication, how to laugh, to sing, enjoy bonfires, enjoy music and concerts, to enjoy and hug friends and family, to live in the moments that sometimes seem like are being robbed from US! And, most of all this person loves me for me, and we both became better people because of each other! This person is part of my everything tribe. This person changed my life. This person helped me so much. This person made me believe in them and myself which if you actually know me it’s a BIG DEAL!!!!! ❤My family loves this person and this person loves them as well. This person also loves his family/children/friends so much and sometimes for this amazing person it’s getting harder to communicate. So patience is the key. But, Huntington’s disease is monster. I hate it. I will fight for a cure, I will fight congress. I will fight for what’s right. Huntington’s disease has touched and impacted my life so much. I am not doing this for likes the world needs to know about this awful disease that no one should ever have. They needed a cure hundreds of years ago. FUHD I really really try so hard but, it’s not a easy road to walk alone. And, that’s how #riseupforHD came about. It’s a place for everyone who has JHD/HD, caregivers, friends and loved one. My hope is to simply make a difference. My hope is that this will be a loving community to share the good and bad times. The times you are so happy you just sing, or dance for the fun of it, and for the days when it pours it literally rains. We have each other it’s a bond that if you aren’t effected by the disease of a loved one or friend it’s hard to understand. That’s why my hope is to spread hope, awareness, and knowledge to everyone and for me to learn more as well.
Facebook – May Huntingtons 6-Dec
I didn’t cause it, I cannot control it, there’s no cure for it, I stand strong anyway.
Facebook – Christie Vann 6-Dec #upliftHD
HD REACH is the love of my heart. As a founding members, Chad Merrell and I have found a new community of a HD family. Thank you to all their support and kindness. Love always and GO HEELS.
Facebook – Susan Olstad Raesor 6-Dec
If you don’t have a support group, please find one. It is the biggest blessing in my life and could be in yours.
Facebook – Andy Squires 30-Nov
Hello my name is Andy I live in Southport in the uk. My family has been affected by HD as my grandfather carried the gene & then we lost my auntie to it. My mum was tested many years ago in the hope she could tell me & my Brother we were clear but sadly mum had it also. After struggling with HD for many years she made the ultimate very brave decision to travel to Dignitas in Switzerland in 2012 for an assisted death to end her suffering. I was helping only just last weekend with a fundraiser held by Kirsty Skinsley who has HD we raised just under £2000 on the night from ticket sales & the auction which I did. The money will go to a charity called Phils Kids which raise money for HD screening & research. I have chose not to be tested as yet I am 51. Good luck for the future I hope all goes well. Regards Andy Squires. Proud patron of Dignity In Dying.
Facebook – Isil Dohnke 29-Nov #GivingTuesday #UpliftHD
Huntington Disease is not easy to describe with words… and it was something I didn’t wanna think about. With the support of my loved ones & HD Reach everything became easier.
HD Reach has everything an HD support system should offer: a support group, credible knowledge and advice, education and support.”
Facebook – Sebastion Dohnke 29-Nov
“Huntington Disease is a very scary disease, but there is also uplift, it brought me very close to someone very special…#UpliftHD”
Facebook – Hailey Patton 29-Nov
About 8 years ago my father got diagnosed with Huntington’s disease. The first couple years were very rough. I felt alone and like no one could relate. My freshman year of high school I came to terms with the fact that this disease was not going away and I was going to have to deal with it. Ever since then I have been very open about this disease. I am now a senior in high school and this past year has been a great time for me and dealing with Huntington’s disease. In July I did my senior project. I presented a informative Huntington’s disease presentation to my community as a way of spreading the word. In August I got to attend a Huntington’s disease camp where other people around my age, dealing with Huntington’s disease, come together and share their stories. I was also lucky enough to be chosen to be on the HD community Thanksgiving card. I could never be happier with myself and how far I have come with this disease. To keep a positive outlook on this disease you have to stay strong for yourself and for your family and I have found it is easier when you are able to talk about it. If you are not able to talk about Huntington’s disease to your friends or family I want you to know I am always here whether you need advice or you just need someone to listen. And never forget “After every storm, there is a rainbow.” #UpliftHD
Facebook – Pastors David Darla Newbold 29-Nov
“Where do you begin when you truly don’t know the start of this disease. You all of a sudden remember the past temper flares, the door slamming, the raised voice from a very quiet humble man.
From someone who would never hurt anything or anyone for any reason.
You begin to wonder what’s wrong, the hand movement, the mental mess, the times there were threats of suicide, the time it was almost carried out.
You then notice the tics, oh but let’s not forget the perfect Nuro doctor who told us “”there is nothing wrong with you, this has got to be mental, you can quit if you want!””
Then came the country doctor who suggested a test, he had a hunch…
That test changed our perfectly happy normal to a perfectly HD normal that changes from day to day, minute by minute and sometimes second by second.
There’s been two hospital stays in a very secure area. There’s been total loss of all reality a few times, there’s the rages, the tics, the tears, the sorry and the dark gloomy sadness.
Looking back this ugly demon reared it’s head in our family in 1986.
Looking forward, we just pray for a better day and a cure.
If not in time for us prayerfully for our family who sadly many have tested positive…..
How do we live with this always looking over our shoulder..
We carry the load!
Our battle is still in the midst of the storm…
Our strength comes from family and friends, from prayer warriors and most importantly from our faith in God.”
Facebook – LS Young 29-Nov
Giving Tuesday is the perfect day to recognize my husband of 44 years, Bill, as the most loving and giving person I know. He has focused his entire life on helping others, encouraging me and our family in each and every endeavor, and affirming his belief and trust in the Lord. Bill starts every day with determination to find joy in something that he experiences. He is always positive, thoughtful, and filled with appreciation for the ways that God has blessed him. He cherishes his family and the time he spends with them, delights in the accomplishments of his grandchildren, and is particularly excited today about the birth of his first great grandchild McKinley just 5 days ago. There is so very much that makes Bill who he is…and Huntington’s disease is just a very small part of him. He does not let it define him, but rather embraces it and uses it as a way to witness to all of us who are blessed to have him in our lives that HD does not have to take the joy out of life. #UpLiftHD
Facebook – Sarah Parker Foster 29-Nov #UpliftHD
Routines are important and, living with HD, I hold my routines as treasures. Eating a healthy diet, walking with my husband, checking in with the supportive staff at HD Reach, and even sitting covered with my favorite blanket are all simple things but, put together, they form a foundation for a life of substance. I am grateful to have some good routines in place and, when the time is right, I can plan and savor new, positive experiences. And if faced with stress, I have my routines to fall back on, to uplift me. Having healthy routines is like having a huge feather bed that I can enjoy landing on and that is always there to catch me!
Facebook – Krista Carr 29-Nov #UpliftHD
In honor of all that is done for families affected by HD (Huntington’s Disease) HD has been a normal part of my world for my entire life. My grandfather had HD and some of my family members are living with it now. Growing up, I learned to be compassionate and understanding of those with different challenges in life. It now affords me the ability to look at my students and be more compassionate of their needs but still push them where they are able. When Paul and I first started dating, he asked me to fly to North Carolina to come to the USMC Birthday Ball. My family found out and invited him to dinner (luckily, he wasn’t scared off by a big family). Paul quickly lit up the room and engaged my uncle who was struggling with HD in conversation about his time in the military. Watching Paul be patient and kind (regardless of some of the speech difficulties and ticks associated with a disease he was unfamiliar with) with my uncle while getting to watch my uncle light up talking about his experiences was heartwarming. Now, Paul is often the first to check on my uncle and make sure he is laughing and having a good time, wherever we are.
Facebook – Rebecca Lassiter 29-Nov
Today on #GivingTuesday, I wanted to share a cause that is close to my heart, HD Reach. My wonderful mother-in-law Ann runs the organization which is dedicated to assisting patients and families affected by HD in North Carolina to access medical care and resources necessary to manage Huntington’s Disease (HD).The first time I made a trip to North Carolina, I met ALL of Gentry’s family at once – they are a big, loud, funny, welcoming crowd. HD happens to be part of their family, but it struck me that they don’t let the disease define who they are and how they treat (and love) each other.Do you have an uplifting story to tell? Each story with the #UpliftHD hashtag will earn a $10 donation to HD Reach!
Facebook – Jean Rodenbough 29-Nov
My News & Record feature about a couple in our church will be featured now by the Huntington’s Disease organization: #UpliftHD
Twitter – Kristen Powers 29-Nov #UpliftHD
My mum had HD, I tested negative, but I have two younger bros not yet tested. I #fightforacure because of them
Facebook – Ann Lassiter 28-Nov #UpliftHD
My father had HD and I was truly inspired by his ability to be optomistic. Every year my dad said at Christmas–“This is the best Christmas we’ve ever had.” He really meant it–EVERY YEAR! It didn’t matter how tough things were–I could always count on him seeing the good things around him. I take that with me all year long!
Facebook – Tony Pipkin 28-Nov #UpliftHD
In honor of all that is done for families affected by HD (Huntington’s Disease) I hope that this story will provide uplifting support for everyone affected by the disease. Imagine the horror to be in a car accident with your family, especially your infant daughter. While driving on I-30 near Hope, AR this past week a semi-trailer truck hit a small sedan and crushed the car. Fortunately there was no loss of life, but a frantic 24 year old mother could not find her 8 month old daughter in the aftermath of the accident. A frantic 30 minute search yielded no results. Only when emergency responders arrived were they able to find the child. She had been ejected from the vehicle and down into a storm drain in the middle of the interstate. The little girl was completely unharmed and was reaching up for her rescuers when found. Mother and child, as well as the rest of the family, have a Thanksgiving that they will never forget. God performs miracles everyday, some more dramatic than others. My prayers for each of you affected by HD that you will find the small and big miracles in your life.