October 2013:
I have been kind of overwhelmed by life and it's menagerie of situations. here's a brief summary: i sit here very anxious, but not worried, excited yet trying to keep it together, in a hotel before checking in later today for pre-op for DBS* deep brain stimulation* at wake forest.
SOME BACKGROUND TO BRING YOU UP TO SPEED.....i WAS DIAGNOSED WITH pARKINSON'S DISEASE IN noV 2002. i HAD TO LEAVE A JOB i LOVED AS AN ANALYTICAL CHEMIST For 17 YEARS IN mAY 2007. By 2012 i WAS HAVING TO TAKE MORE PILLS AT A HIGHER CONCENTRATION AND MORE FREQUENTLY TO CONTROL MY PD SYMPTOMS THAT INCLUDED RIGIDITY, SLOWNESS OR AT TIMES no MOVEMENT, AND WITH MY MEDS i WAS EXPERIENCING on/OFF PERIODS AND HAD TRIED MOST OTHER MEDICAL/DRUGS TYPICALLY used for therapies FOR pd. i HAD MADE IT THROUGH THE LOSS OF MY MOM IN 2010 AND MY DAUGHTER WHO DIED AT AGE 19 IN EARLY 2013. bUT EACH TIME, AFTER MY BODY RECOVERED THE PARKINSON'S WAS A BEAR TO DEAL WITH.
my neurologist back home had told me for 2 years now "you are a good candidate for dbs" and i would always tell him "i'm just not too ready to have someone poke around in my head. plus i said, i'm busy trying to raise and keep up with my daughter who was a junior in high school at that time. our daughter graduated with honors may 2012 and was planning on moving out soon to go to college. well as life would have it, her boyfriend of 3 years said "i'd like to marry your daughter" he told us this 2 months after she graduated high school. we said "ok, when?" thinking the next summer or spring. he said "august 18 ...this year." talk about makin' a momma with pd shake ...that did it. but with the help of amazing family and friends they were joyfully wed aug 18. they went on a honeymoon cruise, came home, moved their stuff 2 hours down the way, started their own business, and our daughter started college at a local community college in the area in which they lived. we would venture down there way about once ever month and a half to see them....they were so happy and doing well. they even had a new family member...a puppy..of course. so i had a a grand -dogger...and wasn't able to take it out by myself since pd was on a tear and changing fast. don't guess any of those significant life changes had an effect there, huh? lol
my husband and i were slowly getting used to the 'empty nest' and we got the call every parent dreads. now i was spoiled by having a healthy child. she rarely had ear infections as a young child, she played sports most of her life from age 5-18 and never had a broken bone or other significant health issue. but on the morning of feb. 27, 2013 around 9 am. i was sitting in my living room floor trying to wait for an "on" time with meds and got a call from my daughter's phone. a guy friend who we had just recently met said, "carol's had an accident and fell in glass and there is lots of blood...we ARE waitinG for cOOPER TO GET HERE...and then they may air lift her to the hospital." he had to go ..he said he or her husband would call us back.
i of course immediately went into full shaking mode. i could not hit the right buttons on the phone to call my husband. i looked outside and our neighbors were just leaving and i screamed at them for help. we got my husband on the phone and tried to tell him the best we could of what we knew from that one call. HE came home as fast as he could, a friend drove us two hours to the town where she was injured. it was the most awful time in my life.i was able to talk briefly to her husband who had been directed to a hospital 45 minutes away only to find out she had not been transferred there. i prayed for my new son-IN-LAW's safety as we all were trying to find out how and what happened and how long it would be before she would be better. cooper, carol's husband of only 6 months, got to the hospital about 20 minutes before us. we entered the emergency room area and the receptionist directed us to where he was...and the look on her face was the first time my heart screamed "oh nooooooo" 'we found cooper sobbing and he told us he was sorry. our daughter had died before any of us got there from a fall into a glass display case at a business beside theirs after she unexpectedly passed out.
our lives have forever been changed since that day. she called me one day after she was married and said "mom, are you going to do the dbs (DEEP BRAIN STIMULATION--A SURGICAL PROCEDURE THAT HAS BEEN FOUND TO IMPROVE SOME pARKINSON DISEASE SYMPTOMS IN SOME PEOPLE)?" and i replied "yes, i had my first evaluation appointment in decEMBER 2012, and hope to have it done by summer 2013"
it has taken a little longer to get here but i am ready to rock n roll with SOME electrodeS AND holes in my head. I am not sure I can explain it but from the first appointment at Wake Forest I had a peace about it all. This in part may have been because I had prayed and told God that he had to take the worry from me and he did!
aS PART OF THE SCREENING THAT WAKE FOREST DOES FOR POTENTIAL DBS PATIENTS, YOU MUST SEE 4 DOCS ( A NEURO AND AN EVALUATION OFF MEDS FOR 12 HOURS--TORTURE TO SAY THE LEAST FOR ME AT THIS place IN THE GAME; A NEUROSURGEON; A NEUROPSYCHOLOGIST; AND A PSYCHIATRIST) AND IT JUST TAKES AWHILE. i WAS ESPECIALLY WORRIED ABOUT WHAT THEY WOULD THINk ABOUT MY mental and emotional state since carol had died. AFter seeing all these doctors they meet to decide if i was a good candidate for dbs.
Finally in late summer of 2013 I was really struggling with symptoms and down to taking PD meds about every 2.5 hours to be able to move And received word that I would be having the first stage of dbs surgery in October 2013. I would have the right side brain placement for the worst side of my symptoms (body left side) and then most likely the second side done around 4-6 months later. i WAS HOPING TO HAVE BOTH SIDES OF MY BRAIN HAVE AN ELECTRODE INSERTED IN THE SAME SURGERY BUT THEY THOUGHT DIFFERENT (AND ARE PROBABLY RIGHT).
fOR MORE ABOUT MY ACTUAL SURGERY SEE ONE OF MY OTHER BLOG POSTS. I have written and self published a book about my daughter entitled "Carol's smile- the life and legacy of Carol hensley singletary"
it has taken a little longer to get here but i am ready to rock n roll with SOME electrodeS AND holes in my head. I am not sure I can explain it but from the first appointment at Wake Forest I had a peace about it all. This in part may have been because I had prayed and told God that he had to take the worry from me and he did!
aS PART OF THE SCREENING THAT WAKE FOREST DOES FOR POTENTIAL DBS PATIENTS, YOU MUST SEE 4 DOCS ( A NEURO AND AN EVALUATION OFF MEDS FOR 12 HOURS--TORTURE TO SAY THE LEAST FOR ME AT THIS place IN THE GAME; A NEUROSURGEON; A NEUROPSYCHOLOGIST; AND A PSYCHIATRIST) AND IT JUST TAKES AWHILE. i WAS ESPECIALLY WORRIED ABOUT WHAT THEY WOULD THINk ABOUT MY mental and emotional state since carol had died. AFter seeing all these doctors they meet to decide if i was a good candidate for dbs.
Finally in late summer of 2013 I was really struggling with symptoms and down to taking PD meds about every 2.5 hours to be able to move And received word that I would be having the first stage of dbs surgery in October 2013. I would have the right side brain placement for the worst side of my symptoms (body left side) and then most likely the second side done around 4-6 months later. i WAS HOPING TO HAVE BOTH SIDES OF MY BRAIN HAVE AN ELECTRODE INSERTED IN THE SAME SURGERY BUT THEY THOUGHT DIFFERENT (AND ARE PROBABLY RIGHT).
fOR MORE ABOUT MY ACTUAL SURGERY SEE ONE OF MY OTHER BLOG POSTS. I have written and self published a book about my daughter entitled "Carol's smile- the life and legacy of Carol hensley singletary"
stay tuned, i aint' finished with this life yet.
judy
