Heres a topic I haven't seen yet. Although I don't think I'm alone in this.
I'am the spouse of a person with hd. and nothing has prepared me for the loniness and isolation that goes with this disease. Most friends don't drop by or call. Even family members don't or won't talk about this subject. Its hard for me comprehend. When a time like this in ones life is so difficult and when you need people the most,I find no one there??? My husband may forget but he see's that people keep there distance and so it causes him to isolate him self all the more from people. He and I feel that people only see the diseased one and not the person.
I constantly think of things to do with my husband to keep his spirit uplifted but I will tell you, where can the caregiver go for understanding. I cry alone and I bare the burden in silence. Some days are just to long. People need people at times like this!!
Any helpful tips would be greatly appreciated.Thank You

Paula:I know exactly what you mean.My mom was diagnosed in 1975 *at* age 53.It came out of nowhere.Mom was an only child.We now think her father had late onset which was never diagnosed.Mom went into an immediate depression & wanted to hide from the world.We didn't knw what to do,so we rarely mentioned her disease.Then the dr put her on to so much haldol she became a zombie,then spent 9 yrs in a nursing home.I always thought I didn't have it,so in 1997 I decided to be tested so my kids would know I didn't have it.Turns out I do have the gene & already had symptoms.I'm 53 yrs old.I wanted to hide from the world also & knew exactly how my mom felt. I went to an excellent therapist & went on prozac.I was able to come out of the depression.I knew I needed to be at my best possible self for as long as I can for my husband & grown up son & daughter. I've been very open about having HD.All 200 people at my office knew why I was going out on disability retirement in 1999. Everyone was kind and sympathetic except for my supervisor & her boss. They treated me like dirt.Since retiring in 1999, I have had old friends & relatives over.Usually they don't mention HD.I always talk about it & what symptoms I have & then they ask me questions. I have a lot of chorea & when I meet someone, I do feel self-conscious about me appearance. Just some thoughts from a person with HD. Hope it perks you up.

Paula,
First, let me say that you are not alone. By coming here you have found some wonderful friends and resources. I only recently found this site when my brother in law tested positive, so I'm a relative newcomer, but what I've seen has really been helpful.
I know what you mean about people distancing themselves. In the years preceeding my mother in laws death, it seemed like all of their long time friends just disappeared, no more invitations, no calls, visits, etc. Personally, I think they can't handle seeing someone they've known and loved suffer so.
You didn't say where your husband was in his disease, is he at home? Still working, etc.?
Please let me know and keep in touch. (I've got really big shoulders ) Also, feel free to add me to your buddy list so you'll know when I'm on line, I work weird hours so I'm on at different times of the day. My screen address is Bfloabbott*at*cs.com.
I will keep you in my thoughts and prayers,
Don