Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Hi Carole- After having read your post we are at a loss for words. Thank you for sharing this information and may God be with you and Tom. Many hugs from Iowa- Sandie and -- GENETICS LBD Caregivers, It is my husband, Tom, who was dx'd with DLBD in 2002. He is one of ten children. Tom's family history is as follows, documented with death certificates in most cases: Grandfather known to have dementia and hallucinations; died at 85 of coronary occulusion. Father dx with Alzheimer, symtoms more like LBD; died at 85 of septicemia/UTI. Great-aunt had Parkinson disease for 12 years; died at 72 of ducubitus ulcers. Aunt died of Huntington's disease at age 61. First cousin, child of above aunt, died at 56 of convulsive disorder. First cousin, also child of above, died at 69 of Huntington's/bi- lateral pneumonia First cousin, also child of above, died at 61 of Huntington's. Aunt (2) died at 72 of cardiac failure, but known to have convulsive movements and bi-polar. Obviously had Huntington's as 3 children and 2 grandchildren dx'd with Huntington's. First cousin, child of above, died at 72 of Huntington's and her daughter, living, dx's with Huntington's. Second cousin, living dx'd with Huntinton's. First cousin, living, age 69, dx'd with Huntington's. First cousin, living, dx'd with Huntington's. Second cousin,living, dx'd with Huntington's. First cousin died at 59 of MS. First cousin died at 61 of anoxic encephalpathy. Niece (daughter of sister) dx'd MS. Nephew (son of same sister dx'd MS. (two youngest children of seven) Three more death certificates are ordered that may possibly be added to this list. Tom has had the test for Huntington's and does NOT have this disease. With this family history, one cannot help but think there is a link with these neurological/brain diseases. Also, might add of Tom's nine siblings, there are two that I would put on the " suspect " list for the future due to recent personality problems. Also, there is a daughter of his oldest sister(his niece), who is now having sudden severe depressive symtoms for which several of the anti-depressants are not working. Hopefully, I'm a bit paranoid, but this was one of the early symtoms of Tom's DLBD. Both she and Tom when in good health were always very " upbeat " . Carole Carlisle Granville, Ohio Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Thanks, Sandie. Makes me wonder if I would have done things differently had I known of Tom's family history. Probably not, but I may have looked into genetic testing. Genealogy is one of my hobbies, thus how I came to discover much of the information. So far no dementia or neurological problems in my family; my mother at almost 90 is sharp as a tack. Most of my ancestors died at an advanced age of heart failure and some with cancer. My worry is for my children and 15 grandchildren, especially since the " Carlisle genes " are so dominent. The extended family will have the information and choice, but doubt very much they'll put much thought to it. Interesting.... Carole - In LBDcaregivers , " Sandie " <sanclown@j...> wrote: > > Hi Carole- > > After having read your post we are at a loss for words. > Thank you for sharing this information and may God > be with you and Tom. > > Many hugs from Iowa- > > Sandie and > > -- GENETICS > > LBD Caregivers, > > It is my husband, Tom, who was dx'd with DLBD in 2002. He is one of > ten children. > > Tom's family history is as follows, documented with death > certificates in most cases: > > Grandfather known to have dementia and hallucinations; died at 85 of > coronary occulusion. > > Father dx with Alzheimer, symtoms more like LBD; died at 85 of > septicemia/UTI. > > Great-aunt had Parkinson disease for 12 years; died at 72 of > ducubitus ulcers. > > Aunt died of Huntington's disease at age 61. > > First cousin, child of above aunt, died at 56 of convulsive > disorder. > > First cousin, also child of above, died at 69 of Huntington's/bi- > lateral pneumonia > > First cousin, also child of above, died at 61 of Huntington's. > > Aunt (2) died at 72 of cardiac failure, but known to have convulsive > movements and bi-polar. Obviously had Huntington's as 3 children and > 2 grandchildren dx'd with Huntington's. > > First cousin, child of above, died at 72 of Huntington's and her > daughter, living, dx's with Huntington's. > > Second cousin, living dx'd with Huntinton's. > > First cousin, living, age 69, dx'd with Huntington's. > > First cousin, living, dx'd with Huntington's. > > Second cousin,living, dx'd with Huntington's. > > First cousin died at 59 of MS. > > First cousin died at 61 of anoxic encephalpathy. > > Niece (daughter of sister) dx'd MS. > > Nephew (son of same sister dx'd MS. (two youngest children of seven) > > > Three more death certificates are ordered that may possibly be added > to this list. Tom has had the test for Huntington's and does NOT > have this disease. > > With this family history, one cannot help but think there is a link > with these neurological/brain diseases. Also, might add of Tom's nine > siblings, there are two that I would put on the " suspect " list for > the future due to recent personality problems. Also, there is a > daughter of his oldest sister(his niece), who is now having sudden > severe depressive symtoms for which several of the anti-depressants > are not working. Hopefully, I'm a bit paranoid, but this was one of > the early symtoms of Tom's DLBD. Both she and Tom when in good > health were always very " upbeat " . > > Carole Carlisle > Granville, Ohio > > > > > > > > > > > > > > > > > > > > > > Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Very interesting Carole. Your family has a true gem in you for supplying them with this information. I remember when my dad was first going through his testing...your initial post brought those memories up. He was tested for Huntington's and it was a gruelling couple of weeks before we got the results back. I had 3 boys, my brother has 2 boys. The results came back negative but the end result was an LBD diagnosis... lesser of 2 evils?? Lots of struggles just the same, just different diagnosis. Kia Kaha - Stay Strong- Sandie -- GENETICS > > LBD Caregivers, > > It is my husband, Tom, who was dx'd with DLBD in 2002. He is one of > ten children. > > Tom's family history is as follows, documented with death > certificates in most cases: > > Grandfather known to have dementia and hallucinations; died at 85 of > coronary occulusion. > > Father dx with Alzheimer, symtoms more like LBD; died at 85 of > septicemia/UTI. > > Great-aunt had Parkinson disease for 12 years; died at 72 of > ducubitus ulcers. > > Aunt died of Huntington's disease at age 61. > > First cousin, child of above aunt, died at 56 of convulsive > disorder. > > First cousin, also child of above, died at 69 of Huntington's/bi- > lateral pneumonia > > First cousin, also child of above, died at 61 of Huntington's. > > Aunt (2) died at 72 of cardiac failure, but known to have convulsive > movements and bi-polar. Obviously had Huntington's as 3 children and > 2 grandchildren dx'd with Huntington's. > > First cousin, child of above, died at 72 of Huntington's and her > daughter, living, dx's with Huntington's. > > Second cousin, living dx'd with Huntinton's. > > First cousin, living, age 69, dx'd with Huntington's. > > First cousin, living, dx'd with Huntington's. > > Second cousin,living, dx'd with Huntington's. > > First cousin died at 59 of MS. > > First cousin died at 61 of anoxic encephalpathy. > > Niece (daughter of sister) dx'd MS. > > Nephew (son of same sister dx'd MS. (two youngest children of seven) > > > Three more death certificates are ordered that may possibly be added > to this list. Tom has had the test for Huntington's and does NOT > have this disease. > > With this family history, one cannot help but think there is a link > with these neurological/brain diseases. Also, might add of Tom's nine > siblings, there are two that I would put on the " suspect " list for > the future due to recent personality problems. Also, there is a > daughter of his oldest sister(his niece), who is now having sudden > severe depressive symtoms for which several of the anti-depressants > are not working. Hopefully, I'm a bit paranoid, but this was one of > the early symtoms of Tom's DLBD. Both she and Tom when in good > health were always very " upbeat " . > > Carole Carlisle > Granville, Ohio > > > > > > > > > > > > > > > > > > > > > > Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
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