I have been around the forum for many years - mostly gaining help. I did a search and did not see this issue being discussed. Just wondering if anyone else has had to deal with their HD family member hoarding? And most importantly - How to deal with it!by edina - Huntington's Disease Support Center
The staff at Tewksbury is fantastic and caring. Just call the main clinic number (978-851-7321) and get started with an appointment - usually the 2nd Tuesday of each month.by edina - Huntington's Disease Support Center
My daughter has been on Tetrabenzine for 2 months and sorry to say, we can see no improvement.by edina - Huntington's Disease Support Center
I am very thankful that today we received the news that my daughter will not have to wait for a hearing or see another Dr. for her SSDI - it has been approved! Could not have asked for anthing better - except a cure for HD. I am thankful. Priscillaby edina - Huntington's Disease Support Center
JL - This may be on the wrong thread but I thought I would pass on the only information I have on Oregon (Other than it being a beautiful state)- My X-husband was being taken care of at a facility in Portland through the Multnomah County Aging and Disability Services. Is this any help to you or your family?by edina - Huntington's Disease Support Center
Thank you all for your thoughts and suggestions. Although X and children still live in the same house they have distanced themselves from her and built a wall. She will not admit depression or take any medication. I am in the process of trying to get her to see her HD Dr. In the past I have given ultimatiums and been barred from her home.by edina - Huntington's Disease Support Center
My daughter is 39 years ol; CAG 47; mid stage. She has not signed an advanced directive or health care proxy. She is eating enough to keep a bird alive. She has dropped from a size 8 to a 2. She takes no medication - refuses to see her Dr. She wants to "die in peace". Is it her decision?by edina - Huntington's Disease Support Center
Ron - That was great! Thanks for the laughs.by edina - Huntington's Disease Support Center
Prayers for strength for your and your family.by edina - Huntington's Disease Support Center
I have found the best way to deal with stress is to find a tennis racket - go into the bedroom - shut the door and let out a blood curdling scream as you slam the mattress as hard as you can. Oh - please be sure no one is in bed at the time.by edina - Huntington's Disease Support Center
Hi Myrna My son (cag 43; age 42; no symptoms) has been experiencing double vision in both eyes for about a month now. Has went to an opthomologist who found nothing wrong with his eyes, other than seeing 4 of something! Has follow up visit tomorrow. Edinaby edina - Huntington's Disease Support Center
JL - Happy Birthday to you.by edina - Huntington's Disease Support Center
He is not on any medication. Optomitrist said symptoms were similar to cataract but cornea was not cloudy. Symptoms are the same all the time day or night. It has been going on for 2 + weeks. There was a problem with mold in air system prior to symptoms. He also has sinus problems and I was hoping it was pressure on the optic nerve but DR. says no. He lives in a remote area with few specialistsby edina - Huntington's Disease Support Center
He says what "will be will be - there is nothing they can do". He has promised to go to a neurologist - sometime. I just had not heard of vision problems being one of HD first symptoms. Edinaby edina - Huntington's Disease Support Center
Hi - Does anyone have any information on HD related vision problems? 42 yr. old son, CAG 42, no symptoms of HD yet. His vision is 20/20 except there are 2 to 4 where there should be 1, even if one eye is closed. Eye pain, halos around lights, blood shot eyes and floaters. Optomitrist says the eye is perfect. Presents like cataract but eye appears fine. Is this HD related? Edinaby edina - Huntington's Disease Support Center
Katherine I just finished reading the article - WoW - you are a very strong, pro-active, focused young lady. I admire your strength and purpose. Keep up the good work and live each day to the fullest.by edina - Huntington's Disease Support Center
My non-HD Grandmother took 1 tsp. of cod liver oil every night in a small glass of OJ. She lived to the age of 94. For 92 of those years she was very active. Her husband was the town Dr. and had started her on it when they married in 1909.by edina - Huntington's Disease Support Center
Our family knew nothing of HD until my oldest son began searching for his biological father, whom we had not seen in 20 years, to see if there were any medical issues that might be causing his sisters problems. He found his father in 2005 at a NH in the end stage of HD -he died Dec.06 My daughter tested 2005, GAC 47, 39 y/o in early/mid stage and has 2 children at risk. My son, 42 y/o tested iby edina - Huntington's Disease Support Center
Alice - My x husband & I divorced over 35 years ago. He stopped contact with our 2 children 20 years ago. Our daughter beagn having health problems 7 yeras ago and our son went on a crusade to find their father to see if there was any medical history we should know about. Well it was the typical Good News - Bad news. He found him in a long term care facility in the end stages of HD. The threby edina - Huntington's Disease Support Center
Gordon - So sorry for your loss. Michael was lucky to have such a loving family. Please know that you are an inspiration to many. My thoughts and prayers are with you. Edinaby edina - Huntington's Disease Support Center
Gordon - You are so supportive to the rest of us - I hope you can feel the support and love we all offer back to you. Thoughts and prayers are with you. Edinaby edina - Huntington's Disease Support Center
Wendy - My daughter has the same muscle soreness and fatigue - her Dr. says he does not feel it is realted to HD. She has been tested for lupus, MS, lime - all neg. If you find an answer I'd love to know about it. Edinaby edina - Huntington's Disease Support Center
Hello - My 37 year old HD daughter has constant pain in her back, arms and legs. Her husband thinks he should wear armour while sleeping due to her constant movements. She never feels that she has gotten a good night sleep. Sleeping medication has not helped and pain meds do not work either. She has been tested for a multitude of other things that they thought may have contributed to the pain - bby edina - Huntington's Disease Support Center
Marsha - Thank you - I think that sounds like a good place to try.by edina - Huntington's Disease Support Center
This is a great site for all that you said and what i was hoping was that someone knew of a monitered site that the kids could go to and vent on thier own level. Kind of like a kids chat room - where they could share their feelings.by edina - Huntington's Disease Support Center
Hello - I am new to this site and am looking for a suitable internet location for my 11 and 12 year old grandchildren. My daughter has been diagnosed and the kids are very computer savy. They will want to investigate on line.I want to point them in the right direction.Thanks.by edina - Huntington's Disease Support Center