Living With HD
Wall of Remembrance
As part of our celebration of May as HD Awareness Month we ask you to send us messages of remembrance of loved ones affected by HD, as an inspiration to all. Please send your message, and photos,
to email@example.com and they will be posted on this page.
My Mom inherited HD from her father, and discovered this AFTER she had her 6 children, and AFTER being told that ONLY MEN get HD.
This was back in the early 60's , so there was NO HDSA or much known about the disorder and/ or how to treat /deal with it .
My Grandmother took care of my Grandfather as best she could at home, until that was impossible. He died from other causes in a nursing home, where she visited him faithfully every day.
My Mom went through all the possible scenarios of the disease, personality changes, cognitive losses, and, finally , physical deterioration. As you can see from the attached photo, she was a stunning woman, but her beauty, prior to the disorder was far deeper than the superficial. She loved children, would do anything for those she cared for and loved life. Most of my memories prior to the worst of her illness are of a soft voice , a sweet smile, and a caring disposition. The ones in the throes of HD, I choose to leave to rest.
My Dad loved my Mom. It was evident from the day the attached photo was taken , to the end of her life. He kept Mom at home . He and my youngest brother took care of all her needs , as best and as long as they could. She, too, ended up in a nursing home, but not until it was no longer physically possible for her to stay at home. Other family members spelled Dad and my brother , so that HD wouldn't wear them out as well.
Dad was an electronics engineer by trade. The kind of man who has to "do something" about an issue or problem. He was not one to sit idly by. He was active in many things centered around his children's lives , trying to help us get through to adulthood. My middle sister ( now affected by HD as well) came home one day and talked about an article she saw in the local paper regarding HD and a support network that was starting near us. She told Dad she would go and check it out, and convinced Dad to attend with her at a later session. To make a long story short, that's basically where the Michigan Chapter of the HDSA got its roots. The gal running that program at the time ( Nancy Wexler) thought Dad could do much better work with the folks dealing with HD than he had ever done with the cub scouts, so talked him into taking over the Xerox machine and the duties of the group. Dad served as Chapter President of the then Southeast MI chapter for many years, as well as serving on the National HDSA Board of Trustees, and as a member of lots of committees trying to help families and make changes for the better in the lives of folks with HD. His effort was tireless, and often made through illnesses of his own. He did so without want of reward and with quite dignity. Many people's lives were touched by the little things he did to make "living with~~ " some better.
Raise us up , he did. Three of my 6 siblings have/had HD . One is deceased. The other two are managing to live decent lives , as best as they can dealing with the disorder. None of us is a dead beat, an alcoholic, a drug addict or an axe murder. We live "normal " lives ( that's a word I never use without the quotation marks anymore, by the way).
I could tell you lots more about the experience of living with HD from my own perspective. But mine is just one of many stories. My personal "wall" contains memories of many , many folks who I have known ~~ as people affected WITH HD : friends, relatives, other National and local board members ~~ as people who took care of someone with HD ~~ again the same list applies ~ and as people who didn't have the disorder in their families, and in a few cases , didn't even know anyone with the disease until they came on board. They met us and got "hooked" and fought with us just the same.
Too many are gone now . They all should be so "honored" , but that would be one long list now wouldn't it?
My parents fought the good fight, each in their own way , and as best they could. We have learned to live our lives around and in spite of HD. Living is indeed the best revenge as you may well all know.
I have changed my direction in this never ending battle, but have not given in or given up. With the continuing efforts of those out there donating, meeting, lecturing and researching , there will be a cure one day. My hope is that ALL disorders like HD will some day be treated, and maybe even eliminated. Until then, let's keep on keeping on , and never forget to stop and say "thank you" to those who have brought us to where we are today.
My mother, Shaila Mehra, passed away on 11th Feb 2011 at age 59. My gorgeous "sunrise eyes" stuck around to see me get married and through the arrival of her grandchild Sasha. And then my butterfly fluttered away. She is my inspiration to be a better, more compassionate person. Red Bull salute to her!
This is Jeffery Smith from Louisa, Ky. He is my Husband. He died October 17, 2010 from respiratory failure caused by aspiration due to the Huntingtons Disease. He was born May 25, 1959. His major achievment in life was serving his country while he was in the army. He was an endloader operator and a load out man on the Big Sandy River where he loaded barges. He loved to hunt and had a wonderful since of humor. Family meant the world to him and Huntingtons Disease stole it all.
wife of Jeffery Smith
Tania "my love" passed away on 11-28-2010 at the age of 37, from a long, courageous battle against Huntington's Disease. Tania had the most amazing spirit and despite a devastating final year and a half of her life, she did not allow Huntington's to consume that spirit. Her amazing empathy towards other never perished, it yet grew stronger as her disease progressed. Her will to live, inspired many. She simply was the most amazing person I ever have known, and was blessed to be her husband, friend and caregiver. Tania will be missed, but never forgotten and now the angel that walked on earth is looking down at us and smililng.
Jerry L. Ehresman was born in Dickinson, ND on October 15, 1952. He passed away March 24, 2006 at the age of 53. A Vancouver, WA resident for 47 years, Jerry owned Jerry's Installations, a carpet-laying business. He was a devout Catholic and loved fishing, The Seattle Mariner's, and his nightly ice cream. He was in the Air Force and served during the Vietnam War. He fought Huntington's with all his might and never gave up. He is greatly loved and missed by his wife, Karla and daughters Angela, Tanya, and Krystal.
Terri L. Wozniak, 50, passed away on October 19, 2010 after her courageous battle with HD. Terri was a 1978 Devilbiss High School graduate. She dedicated 25 years to the United States Postal Office, working as a clerk. Terri loved life, her family, rock and roll music, and shopping. She is remembered as a generous, caring, and loving person with a great sense of humor.
Richard Sullivan (d. December 23rd, 2009 )
(b. December 21, 1953 - d. March 25, 2008)
Brian A. Ingalls, 18, of Londonderry, NH died Sunday May 23, 2010 at his home following a courageous battle with Juvenile Huntington's disease. Brian was born in Newburyport, MA on February 13, 1992, the son of Brenda R. (Lynch) Ingalls and Scott A. Ingalls. He had resided in Londonderry for the past 12 years, formerly living in Lynnfield, MA. Brian simply loved life and his wonderful sense of humor helped make everything around him pleasant and joyful. He never allowed his disease to beat him. It was because of people like Dr. Alyssa Lebel of the Children's Hospital in Boston that Brian was given the opportunity to live the life that he had. Brian was an avid reader and enjoyed many books, including Pokemon and Dragon Ball-Z series books. He had a great love of flowers and animals.
Gilbert Joseph Schoonover (d. December 23, 2007)
Clarence Elmer Clark
(b. December 12, 1934 - d. June 20, 1997)
Bruce and Kirk Hartmann
Elsie Raphael Miller, Zelie Piikea Miller Waegner and Robert Elton Waegner
(Zelie d. 2001)
Robert and Zelie Zelie and Robert
Zelie and Robert Zelie and Robert