Maraha, on 27 February I called you via phone and gave you (of all people) a hard time as pertains to my daughter Liz who was on life support from an instant-death wreck on the 24th; I thought there was some testing means which could/would further the HD effort. On 29 Feb I pulled the plug. She survived colon cancer and was not able to participate in organ donation. I am sorry. bobby bob netx - Huntington's Disease Support Center
A pathological narcicist will evoke many similar symptoms; I can speak from many years within a relationship with a non pHD person. Continuing a relationship is certainly questionalble if not inadvisable.by bob netx - Huntington's Disease Support Center
Robin, your CAG 42 is low; there's no reason to expect to follow in your dad's foot prints. You are a totally different person with your own identity.Each of us travels down our separate path. If you are a kind, genteel person, you will most likely be that same person whenever you start showing sympyoms. My 50-year old (CAG42) daughter still lives by herself and is functionally GOOD. She is withoby bob netx - Huntington's Disease Support Center
mjdelcon Until recently both my hd daughters went with me several times a month with a special singing group to various nursing homes to sing southern gospel songs. Several with obvious HD - some would sit outside and smoke. No doubt they were bonding. My special daughter and I had an agreement we would never go to a nursing home and she would pull the plug on me.Little did I know I would be theby bob netx - Huntington's Disease Support Center
Dusty, I don't state things well. I recognize the benefits of tobacco for an HD person; both my HD daughters smoked, and I made sure the one now deceased always had cigs. . bobby bob netx - Huntington's Disease Support Center
`I am 75 - have a CAG of 40 and am in mid trending toward latter stage of HD; pehaps accelerated by the death of my daughter.I have had a wonderful life; beer, seems to help with my walking (cuts down on my floppy gait) and general mood elevation. (Marsha could speak to the interaction in the brain). bobby bob netx - Huntington's Disease Support Center
Early this morning I posted a new topic updating my status; It was perhaps mistakenly removed along with the job core as spam.. Mine was the first entry; the job core was the second.by bob netx - Huntington's Disease Support Center
Lost my best friend....my youngest daughter.....auto accident - instant death.......age 48...CAG 40...all my plans had been for and with her...she was a wonderful highly intelligent beauty who always drove me everywhere...always upbeat...always helpful....successfully battled CP, Colon cancer....the knowledge that she had an expanded CAG count but expected to continue asymptomatic (similar to meby bob netx - Huntington's Disease Support Center
Lost my best friend....my youngest daughter.....auto accident - instant death.......age 48...CAG 40...all my plans had been for and with her...she was a wonderful person...always upbeat...always helpful....successfully battled CP, Colon cancer....the knowledge that she had HD but expected to continue asymptomatic (similar to me) for another twenty-five years or so.....we were constant companions.by bob netx - Huntington's Disease Support Center
SWILRY, SORRY!!! MY POST WAS FOR ANOTHER INPUT WITH CAG 40. Bobby bob netx - Huntington's Disease Support Center
Will, one daughter is Debbie (CAG 42 Age 49). As an enlisted Air Force airborne Russian linguist, I went through Physiological and Psychological training in Nevada with the SEALs in 1962 (the year of their formation).. I did get to San Diego several times; tis beautiful. bob.by bob netx - Huntington's Disease Support Center
Beautiful, Maggie!!! Congratulations. Tommie and I will do our 50th on March 18. Bobby bob netx - Huntington's Disease Support Center
Sorry I posted a blank. My 47 yd old pHD daughter's previous dentist let my daughter's teeth get into disrepair - most likely due to daughter' excessive movements. My daugter is noe seing my dentist and for all major work is sedated. Depending upon you MIL's financial situation, the added expenses may be covered. bobby bob netx - Huntington's Disease Support Center
Sorry I posted a blank. My 47 yd old pHD daughter's previous dentist let my daughter's teeth get into disrepair - most likely due to daughter' excessive movements. My daugter is noe seing my dentist and for all major work is sedated. Depending upon you MIL's financial situation, the added expenses may be covered. bobby bob netx - Huntington's Disease Support Center
Sorry I posted a blank. My 47 yd old pHD daughter's previous dentist let my daughter's teeth get into disrepair - most likely due to daughter' excessive movements. My daugter is noe seing my dentist and for all major work is sedated. Depending upon you MIL's financial situation, the added expenses may be covered. bobby bob netx - Huntington's Disease Support Center
My 47-yr old pHD daughter had a similar problem: a previous dentist failed to adequately take care of my daughter's teeth - most likely due to my daughter's movements..My daughter is now seeing my dentist and was always sedated for major work. There are added expenses which may be covered dependent upon your MIL's financial situation or dental insurance. bobby bob netx - Huntington's Disease Support Center
Tis now October 4.....I'M SORRY...by bob netx - Huntington's Disease Support Center
Hey kiddoes; I'm 75 CAG 40 and can still do my CAG 42 daughter's finances (she can too). Her son (21 and untested) has accepted the responsibility of his beautiful 2-yr old daughter (one of my Great Grands). He and the baby's mother will marry in a few days; he will go away for awhile, and the DIL and Grand Dau will bring much joy into that home which is two miles up the road. Had a wonderful lby bob netx - Huntington's Disease Support Center
Will, you know how I feel about physical and mental actiivity and supplements; make that an experiment of three! I'm 74 - CAG 40.....pretty much asymptomatic...I've never grown old before. bobby bob netx - Huntington's Disease Support Center
Eric,you do good!!!! Everyone here respects you and values your inputs. bobby bob netx - Huntington's Disease Support Center
Lorraine, Bob here. I'm 74; am lucky to have an expanded count of 40. I love England and its activities; was in and out for many quality times (1956 - 1996). I am not a proponent of "waiting" six months to make a major decision. I am, however, fortunate to still be mostly asymptomatic and able to take care of my lessor-capable girls. I have no twichings nor extra-ordinary pains that Iby bob netx - Huntington's Disease Support Center
Marsha, as evidenced by the responses, you are held in the most high esteem. I add my name to the 'caring' card. Bobby bob netx - Huntington's Disease Support Center
Golly, Barb. So unexpected; so devastating. I hope our numbers provide you some measure of strength and comfort. Bobby bob netx - Huntington's Disease Support Center
You asked: I say no; sounds as if he also has a few character flaws. Don't enter into any arrangement thinking/hoping/praying an HD cure is on any horizon. Age of onset is directly related to CAG count; there are mitigating factors (exercise & supplements). I'm thankful my count is 40 (age 74): one hd-disabled daughter(age 47) has a count of 42, and the other (age 46) has a count of 40. Yby bob netx - Huntington's Disease Support Center
Happy 64th Birthday, Will. Soon, I will have my 74th. Congrats are in order!!! Bobby bob netx - Huntington's Disease Support Center
I can not speak to your family situation; don't know your age or your mother's health, but it's way too early to think about punching out. Appears to me you have your head on straight and are set to do battle. Don't let an expanded CAG count push you over the edge. You can delay symptoms onset. Try to get on with life; stay active - get your masters. (?serious?) Mental stimulation is probablyby bob netx - Huntington's Disease Support Center
4/21/2010: Dallas UTSW Med Center is soliciting participants for a Co Q10 study. Amit, Giselle or Dr. O' 214-648-0417. There may be other locations in your area. Bobby bob netx - Huntington's Disease Support Center
Maggie, Amit was the MPH; Dr O' was the MD. My final visit is next week. Bobby bob netx - Huntington's Disease Support Center
FYI: The HART doctor at UTSWMC was anticipating an open label (ACR16) follow-on trial. On 5/13/10 the MPH (Master of Public Health) working with me advised the HART doctor that any Medical Doctor would be able to prescribe ACR16 after submitting appropriate paper work. Maggie, the MPH remembered you and your husband. I discussed 'Compassion-use' and your ground-breaking work with the FDA and Neby bob netx - Huntington's Disease Support Center