Hello all,
My name is Jim Janowicz, and I live in Michigan. My story will be in two segments. The first section will deal with my wife Nancy's stroke and the second will cover how I became an involved responder with the Massachusetts General Hospital's internet "Stroke" chat room, called Brain Talk.
Part One
I retired in 2000 and Nancy and I began to enjoy a well planned life style of relaxation and travel. We had begun to enjoy our golden years.
Life was good and the first 14 months of retirement were wonderful. We had just returned home, after visiting our youngest son and his family in New Jersey. We unpacked and headed off to bed. When we arose on Saturday morning, I looked at Nancy and quickly noted contorted facial features.
Immediately I knew that the "STROKE FAIRY" had paid an unwelcome visit during the night. In fact, if you had cut Nanc in half from the top of her head to the bottom of her feet, the right side of her body was just GONE. So off to the ER we went.
Typically we received a poor diagnosis. Later that day however, she was admitted to the hospital for a full evaluation and it was determined a major stroke had occurred within the "Brain Stem"--PONS AREA. The saving grace was that, while there was no feeling on her entire right side, no arm, hand or leg contortions occurred. Dexterity was intact which was a miracle.
The STROKE occurred on 10/5/2001. She worked very hard at rehab but little positive change took place. One real blessing lasted during her entire 9 year struggle-----NEVER-EVER was there one word of complaint. The stroke was just one added dimension to what I described as a woman who had the body from HELL. The saving grace was that her mental acuity was always intact.
Coupled with the stroke was the fact that at the time of the stroke, her cholesterol count rose to an outlandish 519. In a weeks time it dropped to the upper 300's and remained high.
She was referred to a clinic at the University of Michigan which was specifically designed to treat high and erratic cholesterol numbers. After 9 months, the director said," Nanc, you no
longer need to come to the clinic as we have done everything we know how to do for you and we have not budged your numbers one iota." Shortly thereafter Nanc suffered a rhabdomyolysis attack from her cholesterol meds and lost 90% of her strength and it never returned. Add the above problems to arteriosclerosis and allergic reactions to almost any medication, and you have the makings for a tough life at best. Thus the stage was set and her passing occurred on-- would you believe-- April Fools Day/2009
Part Two
Well, back to the attack. We all know a little about strokes, but when it strikes close to home, your data base does not have all the specific answers to the 100's of questions you now have, PLUS----the medical profession has so few answers to share.
Thus, to the internet I turned. It was 2:00 am and I started searching, when I ran across the MGH web site. I began to post
questions on the "Brain Talk" /Stroke web section. Within 30 minutes I received encouragement and in depth answers to some of my many questions from Rowland in California and Mango Shade in Australia. Thus began a 9 year odyssey of getting valuable help and in return, giving assistance to others who also visited the site looking for answers, when their local professionals failed to provide even minimal assistance.
What I quickly learned was that there was a cadre of folks (about 10) who closely monitored the Brain Talk site. They would post helpful answers to the many questions being posted daily as they arrived from across the world. Quality assistance came from Ram in Australia, KD in Cleveland, Neoma in Utah
Sharon in Ontario, Legal Sec in IL, Mountain Man in CO, and a Doctor who never really shared a name or location. That lead to the monitors going one step beyond which was interacting with each other and quickly becoming good friends.
Since each monitor came to the net with very different stroke backgrounds and having suffered a wide array of other medical problems, they formed a super source of factual information.
Also since some folks came from the medical field, they also had access to medical information or persons who could assist in answering many tough questions. It was amazing to step back and see just how helpful this small group of stroke survivors had truly become.
What always impressed me about the group was their generous giving of time and the quality of their information. Some answers came from first hand experiences while other answers were from accurate research. We knew often that we were filling a void because benefactors would return to the Brain Talk site with gracious-- "THANKS YOU'S".
Then came the MGH server crash, which severely damaged the ability of people to receive help via the roughly 400 MGH net/sites covering the vast array of medical illnesses. Truly, it was like the loss of a close friend.
My name is Jim Janowicz, and I live in Michigan. My story will be in two segments. The first section will deal with my wife Nancy's stroke and the second will cover how I became an involved responder with the Massachusetts General Hospital's internet "Stroke" chat room, called Brain Talk.
Part One
I retired in 2000 and Nancy and I began to enjoy a well planned life style of relaxation and travel. We had begun to enjoy our golden years.
Life was good and the first 14 months of retirement were wonderful. We had just returned home, after visiting our youngest son and his family in New Jersey. We unpacked and headed off to bed. When we arose on Saturday morning, I looked at Nancy and quickly noted contorted facial features.
Immediately I knew that the "STROKE FAIRY" had paid an unwelcome visit during the night. In fact, if you had cut Nanc in half from the top of her head to the bottom of her feet, the right side of her body was just GONE. So off to the ER we went.
Typically we received a poor diagnosis. Later that day however, she was admitted to the hospital for a full evaluation and it was determined a major stroke had occurred within the "Brain Stem"--PONS AREA. The saving grace was that, while there was no feeling on her entire right side, no arm, hand or leg contortions occurred. Dexterity was intact which was a miracle.
The STROKE occurred on 10/5/2001. She worked very hard at rehab but little positive change took place. One real blessing lasted during her entire 9 year struggle-----NEVER-EVER was there one word of complaint. The stroke was just one added dimension to what I described as a woman who had the body from HELL. The saving grace was that her mental acuity was always intact.
Coupled with the stroke was the fact that at the time of the stroke, her cholesterol count rose to an outlandish 519. In a weeks time it dropped to the upper 300's and remained high.
She was referred to a clinic at the University of Michigan which was specifically designed to treat high and erratic cholesterol numbers. After 9 months, the director said," Nanc, you no
longer need to come to the clinic as we have done everything we know how to do for you and we have not budged your numbers one iota." Shortly thereafter Nanc suffered a rhabdomyolysis attack from her cholesterol meds and lost 90% of her strength and it never returned. Add the above problems to arteriosclerosis and allergic reactions to almost any medication, and you have the makings for a tough life at best. Thus the stage was set and her passing occurred on-- would you believe-- April Fools Day/2009
Part Two
Well, back to the attack. We all know a little about strokes, but when it strikes close to home, your data base does not have all the specific answers to the 100's of questions you now have, PLUS----the medical profession has so few answers to share.
Thus, to the internet I turned. It was 2:00 am and I started searching, when I ran across the MGH web site. I began to post
questions on the "Brain Talk" /Stroke web section. Within 30 minutes I received encouragement and in depth answers to some of my many questions from Rowland in California and Mango Shade in Australia. Thus began a 9 year odyssey of getting valuable help and in return, giving assistance to others who also visited the site looking for answers, when their local professionals failed to provide even minimal assistance.
What I quickly learned was that there was a cadre of folks (about 10) who closely monitored the Brain Talk site. They would post helpful answers to the many questions being posted daily as they arrived from across the world. Quality assistance came from Ram in Australia, KD in Cleveland, Neoma in Utah
Sharon in Ontario, Legal Sec in IL, Mountain Man in CO, and a Doctor who never really shared a name or location. That lead to the monitors going one step beyond which was interacting with each other and quickly becoming good friends.
Since each monitor came to the net with very different stroke backgrounds and having suffered a wide array of other medical problems, they formed a super source of factual information.
Also since some folks came from the medical field, they also had access to medical information or persons who could assist in answering many tough questions. It was amazing to step back and see just how helpful this small group of stroke survivors had truly become.
What always impressed me about the group was their generous giving of time and the quality of their information. Some answers came from first hand experiences while other answers were from accurate research. We knew often that we were filling a void because benefactors would return to the Brain Talk site with gracious-- "THANKS YOU'S".
Then came the MGH server crash, which severely damaged the ability of people to receive help via the roughly 400 MGH net/sites covering the vast array of medical illnesses. Truly, it was like the loss of a close friend.
