Thank you for your responses.by bob netx - Huntington's Disease Support Center
My 47-year old daughter (CAG 42) is exhibiting signs of chorea in the hands. What's the latest on treating chorea? I will check for interactions with her ?bipolar? meds. Thanks.by bob netx - Huntington's Disease Support Center
On 12/08/09: One daughter and I Interviewed and tested at UTSWMC; Amit Gode MPH and Dr O'suilleabhain were professional and gracious. I may be acceptable; sponsor/ medical discussions will determine my daughter's eligibility. I anticipate I or we wll start the trial within 15-days.by bob netx - Huntington's Disease Support Center
Maggie, that's a wonderful plan/trip. Is that about the time the Kings start running! bobby bob netx - Huntington's Disease Support Center
11/18/09: One daughter and I were scheduled for a 12/03/09 interview at UTSWMC. bobby bob netx - Huntington's Disease Support Center
Have heard no more from UTSWMC; therefore, must assume the SSRI escitolopram (Lexapro) is the eliminator. bobby bob netx - Huntington's Disease Support Center
stevei, . tis s...... so close to home. bobby bob netx - Huntington's Disease Support Center
We can hope!by bob netx - Huntington's Disease Support Center
I have heard no more from UTSW Med Center in Dallas. Perhaps Amit Gode or Dr O will schedule me this week. Bobby bob netx - Huntington's Disease Support Center
Kip, Bob here - age 73 CAG 40 - given my family' history, I am very fortunate to only have a 40 count. OPINION: One can delay onset of symptoms through mental/physical exercise, diet, and supplements. Re ACR 16 trial, I will go to the University of Texas Southwestern Medical Center (UTSW) in Dallas, Tx next week for my initial interview. I have two phd daughters - one does not qualify; a decisby bob netx - Huntington's Disease Support Center
Carla, wish I had the words to make you feel better! I am sorry, though. Just spit it out on the Forum! Rant here! Rave here! We are in this together! I'm the youngest phd (CAG 40) of six in a row - the only one still living. Both my daughters are phd (CAG 40 and 42). We are fortunate to have low counts. ((love to take those odds to Vegas)) Bobby bob netx - Huntington's Disease Support Center
Julia, since you asked, encourage your husband to put his fears and/or selfishness aside and test. Otherwise, you will be aprehensive for the remainder of your lives. Fear should not dictate a lifetime of planning. 25 is so young - still at the invincible age; most of my grandchildren are older. Your husband should not put you in this position. One either knowingly or ignorantly brings childrby bob netx - Huntington's Disease Support Center
Maggie, I could not find the trial within UTSW network. BTW: Amit Gode just called, and I will be providing my and my daughters' info. Bobby bob netx - Huntington's Disease Support Center
Maggie, thanks. Still no response from UTSW. FYI: I can find no ongoing ACR16-related clinical trial at UTSW Med Cen. Bobby bob netx - Huntington's Disease Support Center
Maggie, thanks. Spoke with Dr Tedroff; nice man - very apologetic. Huntexil/ACR16 activity/trials are on going. He has sent my data to Rochester. He is expecting UTSW to contact me. Left a voice msg with Gode. Bobby bob netx - Huntington's Disease Support Center
Barb, what's going on in Canada? peter bris, what's goin on down under and in Europe? Couple of weeks back when I spoke with UTSW Med rep concerning the ACR-16 trial, there was much interest; he also offered me participation in the COQ10 trial after the ACR-16 trial. Nothing in the exclusion data affects me and one of my daughters - perhaps not the other. This may not be a local phenomenby bob netx - Huntington's Disease Support Center
Many excellent responses to my previous ACR-16 post NFA = no further action. N/S = NeuroScience. 10/5 Spoke with UTSW Med Gode (very responsive during the call - NFA) 10/12 Emailed Drea (I assume to be the U.S. point of contact - NFA) 10/13 Left voice message with Drea - NFA. 10/13 Left voice message with Gode - NFA. 10/14 Called N/S Test Medical Director Dr. Tedroff in Denmark. His oby bob netx - Huntington's Disease Support Center
Maggie, thank you; good to know we are in the same boat. Have you reconnected with NeuroSearch? Robie, I shall update you. Bobby bob netx - Huntington's Disease Support Center
Maggie, I followed your and Tony's ACR-16 era. Thank you. Seven days back I contacted UT SW Med (amit Gode); stated I wished to enroll myself and my two daughters. I gave him our CAGs. He said he would talk to the doctor and get back with me. He has not. He has all my contact info. How much time lapsed before you were contacted? I will contact him/them Monday. Bobby bob netx - Huntington's Disease Support Center
judy; Dave is right on! It's as though he tapped my mind. Take care of yourself and your kids. It does not get better. No genetic cure is in sight. It becomes a non-fun world - only capable of being changed by you - a little fling, an outing (whatever you can be comfortable with little guilt). When it is necessary, divorce him, and he will perhaps have sufficient federal/state aid to enter intby bob netx - Huntington's Disease Support Center
Margaret, I consider myself normal and that normal people worry the variances when one absolutely knows 'yes/no' based on ones CAG count - expecially if on a borderline. I tested in 2000 (CAG 40) and remain pretty much without symptoms at age 73. At that time the 'declared' absolutes were 39 (perhaps) and 40 (definite). I worried that my count might be 39 (they may have made a mistake). Lots ofby bob netx - Huntington's Disease Support Center
What can I say, Ron? He will be forever immortalized in the HDAC Forum. I can/will share your pain and grieve with you. Bobby bob netx - Huntington's Disease Support Center
Probably so; most likely attended some of the same briefings. Many (?most) of the tankers we rendezvoused came from elsewhere. Glad he was not on the one which augered in just prior to one of our flights (remnants still off the side of the runway) or the B47 that which did not quite make the takeoff. Hope you are enjoying your vacation. Bobby bob netx - Huntington's Disease Support Center
Barb, I am now 73; all else is ok. Bobby bob netx - Huntington's Disease Support Center
Whatever he told you about the weather is probably true. I went through Arctic Survival at minus 50-55. Be wary of people who say, "there's no difference between minus 30 and minus 50". Somewhere in there is where the ice fog begins. I was there from late 62 to late 65 (36 months) in the RC135s. We sucked up lots of fuel. Bobby bob netx - Huntington's Disease Support Center
That's correct. Bobby bob netx - Huntington's Disease Support Center
Will, that's all I need. Enjoy the conference. Thank you. Bobby bob netx - Huntington's Disease Support Center
Chagrin Smiley (not found): Have not followed the World Conference preparations much, and I am not attending. May have missed data on the Forum. Is there/will there be a central ?site? where one can request hard copies of 'selected' (pick and choose) presentations? Thank you! Bobby bob netx - Huntington's Disease Support Center
Trust you had a birthday to remember (in a good sense); enjoy the coast. I have a neat friend (excellent photographer)in that area. He was a memberof my flight crew on Eielson AFB, Ak in 1962-63. Bobby bob netx - Huntington's Disease Support Center
Tis true; I am well - Pretty much asymptomatic. Wherebouts on the Pacific (not specifics) might you be headed? I mostly stay with MGD, unless I am eating out. Coastal rums! Today I will grill for the family: perhaps two neighbors; my wife; three kids; four or five grandkids; and, a couple of greatgrands will stop by. I truely wish you a good vacation. Bobby bob netx - Huntington's Disease Support Center