WeAreHD.org - The Social Support Network for People Living with Huntington's Disease

I am going into stage 4 of HD.  I have hallucinations even with meds, outbursts, and somedays my chorea and dystonia is horrible.  I do have some good days.  I always dread going to my doctors because they are just treating my symptoms and eventually one ends up on so many medications that the body gets immune to them.  I am currently writing a novel about the terminal thoughts of a HD patient.  It sounds morbid but I want people to understand, patients and caregivers, what goes on in ones mind.  Its okay to feel cheated when you finally meet the man of your dreams such as I have.  Its okay to shake in public (that has been difficult for me, I always feel like people are staring at me.  I spent 12 years in medical school so that helps me with my doctors but I am unable to practice any longer which is discouraging after all of those years.  My son has been my goal to keep pushing even on bad days.  He is only 13.  I was dianosed in 2001 so he grew up fast sadly.  I have felt so alone all of these years but it seems like now HD is more recognized so hopefully the reserachers will have some answers and I pray everyday my son does not carry the gene.

Graduate UF college of medicine.  I worked in a level one trauma center in the ED.  I am married.  My husband had two children that we have custody of and of course my Andrew (my son).  I was a single mother after a traumatic divorce in 1996, my ex abandoned my son so we were like glue for 11 years until I remarried.  I will keep everyone updated about my book when it is finally released as I am still writing.  Take care my friends, you are not alone.