"It's Just Brain Surgery, Gary"
Donation protected
For Gary Kennedy, his family and friends, it was never "just brain surgery" -- instead, it was a lifeline thrown Gary in the face a storm whose tumult took him away from the life, occupation, and independence he so dearly loved. Now, at the dawn of a new year, Gary and his wife, Sharon, are facing a reality completely at odds with the life for which they've each worked so hard. Sharon looks on, helpless, against the relentless toll each new day takes upon her husband.
Gary now 70 years old, is a highly accomplished He has provided for his family in this way for 4 decades until in the 90’s he was diagnosed with an Essential Tremor. He continued life as usual until the past 5 years as the tremors progressed to seriously debilitating levels. Issues with holding objects are common among patients who have an essential tremor in their hands or arms. Episodes of periodic uncontrollable shaking occur in the hands and forearms. These are most prevalent when the individual is trying to hold something or use their muscles to perform a task. Gary was a man of ideas, a man of action; today, however, Gary can no longer be the man he was meant to be. Instead, he faces an uncertain future. Sharon faces a future where she can only look on as the man she married suffers.
Where once there was music, the product of Gary's steady hands and determined will, issued forth from keyboards and, especially, the trumpet, which Gary formerly played in college, for bands and as a professional musician.
Where once there was exquisite skill, and dedication for his craft -- a skill used to uncover an intricately-carved spiral staircase which would become the centerpiece of an ornately designed home. The highly-acclaimed carpenter with incredible talent in fine woodwork and cabinetry was now forced to idle, stopped from pursuing his craft and his livelihood. Gary could no longer grip, or even reach for, the tools with which he'd worked for years. The dropped screwdrivers and nails, his shaking, weak grasp which had made use the of power tools, even his increasing difficulty buttoning a shirt or lifting a toothbrush from the bathroom vanity now could at last and at least be explained. Gary and Sharon listened to the physicians and studied the condition and its implications and its likely course, all the time maintaining the same, steadfast belief they'd held since the tremors first began. “We can overcome this.” But, at last, the creator, the visionary could no longer continue; the storm within his arms and hands could no longer be contained in any sort of pursuit of his livelihood.
So, ever a partner and a provider, Gary shifted from woodworker to delivery driver at a fraction of the income he once made. Gary and Sharon made the necessary adjustments in their financial life to accommodate and carried on. It was a long five years during which he fought his tremors into just enough submission as to enable him to continue working his delivery job. Yet, no determination of will or stubborn refusal to quit could subdue the utter devastation that the nerves delivering misinformation to his upper limbs seemed determined to wreak upon his life. The time came when -- despite his best efforts otherwise -- Gary finally could do no work at all. September of 2019 initially seemed to signify the end of the tremors, but as with so much else that lie ahead, unseen, it was to be but another sharp curve in the road of the Kennedys' future. A type of surgery called "Deep Brain Stimulation" or DBS, had become increasingly common for treating several neurological conditions; among those conditions with which it had achieved a high degree of success was Essential Tremors. DBS seemed to, at last, be the answer for which Gary and Sharon had long been searching. Comprised of several surgeries, Deep Brain Stimulation aids in reducing or eliminating neurological symptoms by the implantation of an electrode within the brain. It is this electrode which produces electrical pulses which counter those signals, improperly timed or excessively produced and transmitted by a patient's nerves; in order for the electrode to perform as intended, a generator must be implanted, and is placed in a patient's chest. Running from the generator to the electrode is a length of insulated extension wire which, once inserted, is then carefully threaded upward through the full length of a patient's neck, then up the back of the head and into the brain, where it ends at the exact place in the brain where the tremors originate. Gary’s surgeries took place at The Clinical Neuroscience Institute in Dayton , Ohio. Gary’s left brain, controlling his right hand was implanted first. The DBS surgery went quite well; after boring a 1 inch diameter opening in his skull, even during the surgery, itself, surgeons were able to determined that the electrode was placed correctly and with Gary woke up and under minimal anesthesia, "twilight" anesthesia, asked him to sign his name three times. Each signature line is a testament to both the severity of Gary's tremors and to the astonishing effectiveness which DBS can have upon Essential Tremors. A first signature line is illegible as even a signature. It is followed by a second which appears perhaps shaky or uncertain, but is legible, and finally by a third line where Gary's name is signed, easily readable, clear and produced without hesitation. (See photos) A second surgery in January 2020 placing a lead in his right brain brought control to his left hand. This seemed to bring a close to Gary's previously-futile battle against his own brain for control of his arms and hands. As with any surgery, DBS carries with it fairly typical risks: post-operation infection, problems with the healing of the incisions, etc. But, as Gary and Sharon continued forward into the new life it seemed undue concern. By early 2020, Gary was not only back at work in his woodshop, he was utilizing the specialized, power tools of his trade with the same ease he'd known prior to the onset of Essential Tremors. He could again lift a mobile phone or a fork, fold a button into a buttonhole and unbutton it again. His life was again one of music, and his hands again became his craft, his method of creation, and his expression of art. Hope seemed to have bloomed and come to fruition, yet Gary's future took another turn, this one down a path that has yet to play itself out. As I type this today, I know that within a month, Gary will again resume the seemingly endless onslaught of doctor's appointments, surgeon's, and that the vicious pain assaulting him each and every day will continue, unabated. Gary's right vocal cord will remain paralyzed, altering his voice, and even more frighteningly, he will continue to choke multiple times per day simply trying to swallow liquids. Gary's hands are once again captive to Essential Tremor due to scalp infections. Initially small spots of white appeared along the surgical incisions developing into abscesses. With each new round of antibiotics, even if one spot would clear, in its place, more would come. The severity of the infections increased with time, and, with open wounds providing bacteria a potentially direct route into Gary's brain, the danger could no longer be treated the same way. So, rather than attempting to continue, with little success, treating individual infections as they arose, Gary's neurosurgeon brought in a plastic surgeon. Together they formed a plan to stop future recurrences of such infections altogether: they both agreed; a scalp transplant was necessary. This surgery not only necessitated the removal of key pieces of the DBS implant -- rendering it, for the time being, nonfunctional, but brought with it many additional complications of its own. It is Sharon, by Gary's side throughout it all, whose words do the best justice to her husband's current condition, and with which I will end the account of Gary's medical situation: “This part, the scalp transplant has been horrendous for both of us. There were 3 major wounds created by the 11 ½ hour surgery and it really took Gary down, very hard. We spent 5 days in the ICU Burn Unit, where they have great skills with skin grafts and wound care. He remained barely conscious, unable to move himself or even sip from his water glass, he was so weak and in pain. I stayed with him 24/7 during those days sleeping little, in a vinyl recliner beside his bed, unless our daughter came to relieve me. He pulled at things he shouldn’t trying to remove the neck brace, the Central Line and push at his head dressing or his leg where donor skin was peeled off to create his new scalp. He also had an 18 inch incision on his back from behind his right armpit arching down to his waist, where two drain tubes were stitched into his side. This cut was to remove a large piece of muscle, (more donor tissue), that the surgeon placed on his head just above his forehead like a shelf. It literally looked like a piece of meat with skin on and was there to bring circulation to his new scalp. Gary also had a large piece of rolled muscle in front of his ear and down to his jaw with an incision from there on the side of his neck to his clavicle bone ending with another drain tube. “My heart broke into a million pieces for him. Neither he nor I had any idea the surgery would be this huge and disfiguring, and, in his state, he wouldn’t see his extensive wounds for a week. As we left the hospital, Gary looked in the visor mirror and said, “Oh! I look like Frankenstein.” “The care he required at home from me was 24/7 for well over 6 weeks, with daily wound care nurses visiting to change his dressings and monitor his progress. Not only that, but in reaching Gary's carotid artery in his Rt neck to supply circulation to the donor tissue on his scalp, the plastic surgeon had, in his own words, said to me; “That part was rather a rough procedure, digging around with my fingers, pushing aside nerves and muscles to get to necessary vessels for profusion.” “We soon found out how rough it was as there was quite a bit of nerve damage done. Gary now has a paralyzed Rt vocal cord and his voice is very raspy and soft, he strains to make himself heard. He has been choking on beverages multiple times a day since surgery. But the worst side effect has been searing jaw pain. All of these symptoms were expected to dissipate when swelling around the nerves went down, but they have not, and it’s been 4 months now. With every first swallow of food or beverage Gary has severe pain, waaay past a 10 (on a scale of 1-10, with 10 being the worst you’ve ever experienced). He describes it as; “Like acid being poured along my lower jaw from the center to my ear.” “His pain seems last about a minute and is happening multiple times a day, it’s hard to watch. The plastic surgeon does not understand it, he told us he has not not seen this happen before. We were sent to an ENT (Ears Nose Throat) specialist who has said he doesn’t know the cause of it, let alone how to resolve it – yet. Further tests are to come in February… I won’t stop advocating until we get relief for him!” Sharon, has been a dedicated, compassionate hospice nurse for decades, she now watches her husband's suffering and faces the frustration of knowing she can neither heal him medically or help much with expenses (she receives a modest $206 in unemployment weekly). Because of being his caregiver, advocate, keeper of appointments and driver, and also because of the substantial risks posed to Gary by Covid or any other infection, Gary’s doctors are recommending she not work her job until it is safe for him. Though they've held on, financially, since the beginning of Gary's ordeal in 2019, the couple's finances have reached a point where money has become critical: with bills mounting and monthly expenses vastly larger than the small Social Security payment Gary receives each month. Gary and Sharon must start 2021 facing the stark reality that they not know how they'll pay the medical bills, this month's utilities, mortgage, insurances etc…. With plastic surgery in February or March and another surgery to reconnect his DBS implant as soon it as is safe, Gary also faces the dire possibility that he may never again experience life without Essential Tremors, nor life of any decent quality again; it won't be for lack of willpower or due to giving up in despair, it will be finances which dictate the path of his life from this point forward. This is why we as friends of Gary and Sharon, have come together to share their story and search for the kindness of others who may have the money to give that we do not. We sincerely hope you will consider assisting this wonderful, giving couple during this time of dire need. Each of them has impacted the lives of countless others in the most wonderful, positive ways; we hope that perhaps you might be among those who will impact their lives in a similar way. Thank you so very much for reading their story, and may you have a healthy, blessed year as we all look forward to the end of Covid-19. “I assure you; your assistance will not be wasted as Gary and Sharon live humble lives and are poster children for honesty and openness.” (David Priest)
Gary now 70 years old, is a highly accomplished He has provided for his family in this way for 4 decades until in the 90’s he was diagnosed with an Essential Tremor. He continued life as usual until the past 5 years as the tremors progressed to seriously debilitating levels. Issues with holding objects are common among patients who have an essential tremor in their hands or arms. Episodes of periodic uncontrollable shaking occur in the hands and forearms. These are most prevalent when the individual is trying to hold something or use their muscles to perform a task. Gary was a man of ideas, a man of action; today, however, Gary can no longer be the man he was meant to be. Instead, he faces an uncertain future. Sharon faces a future where she can only look on as the man she married suffers.
Where once there was music, the product of Gary's steady hands and determined will, issued forth from keyboards and, especially, the trumpet, which Gary formerly played in college, for bands and as a professional musician.
Where once there was exquisite skill, and dedication for his craft -- a skill used to uncover an intricately-carved spiral staircase which would become the centerpiece of an ornately designed home. The highly-acclaimed carpenter with incredible talent in fine woodwork and cabinetry was now forced to idle, stopped from pursuing his craft and his livelihood. Gary could no longer grip, or even reach for, the tools with which he'd worked for years. The dropped screwdrivers and nails, his shaking, weak grasp which had made use the of power tools, even his increasing difficulty buttoning a shirt or lifting a toothbrush from the bathroom vanity now could at last and at least be explained. Gary and Sharon listened to the physicians and studied the condition and its implications and its likely course, all the time maintaining the same, steadfast belief they'd held since the tremors first began. “We can overcome this.” But, at last, the creator, the visionary could no longer continue; the storm within his arms and hands could no longer be contained in any sort of pursuit of his livelihood.
So, ever a partner and a provider, Gary shifted from woodworker to delivery driver at a fraction of the income he once made. Gary and Sharon made the necessary adjustments in their financial life to accommodate and carried on. It was a long five years during which he fought his tremors into just enough submission as to enable him to continue working his delivery job. Yet, no determination of will or stubborn refusal to quit could subdue the utter devastation that the nerves delivering misinformation to his upper limbs seemed determined to wreak upon his life. The time came when -- despite his best efforts otherwise -- Gary finally could do no work at all. September of 2019 initially seemed to signify the end of the tremors, but as with so much else that lie ahead, unseen, it was to be but another sharp curve in the road of the Kennedys' future. A type of surgery called "Deep Brain Stimulation" or DBS, had become increasingly common for treating several neurological conditions; among those conditions with which it had achieved a high degree of success was Essential Tremors. DBS seemed to, at last, be the answer for which Gary and Sharon had long been searching. Comprised of several surgeries, Deep Brain Stimulation aids in reducing or eliminating neurological symptoms by the implantation of an electrode within the brain. It is this electrode which produces electrical pulses which counter those signals, improperly timed or excessively produced and transmitted by a patient's nerves; in order for the electrode to perform as intended, a generator must be implanted, and is placed in a patient's chest. Running from the generator to the electrode is a length of insulated extension wire which, once inserted, is then carefully threaded upward through the full length of a patient's neck, then up the back of the head and into the brain, where it ends at the exact place in the brain where the tremors originate. Gary’s surgeries took place at The Clinical Neuroscience Institute in Dayton , Ohio. Gary’s left brain, controlling his right hand was implanted first. The DBS surgery went quite well; after boring a 1 inch diameter opening in his skull, even during the surgery, itself, surgeons were able to determined that the electrode was placed correctly and with Gary woke up and under minimal anesthesia, "twilight" anesthesia, asked him to sign his name three times. Each signature line is a testament to both the severity of Gary's tremors and to the astonishing effectiveness which DBS can have upon Essential Tremors. A first signature line is illegible as even a signature. It is followed by a second which appears perhaps shaky or uncertain, but is legible, and finally by a third line where Gary's name is signed, easily readable, clear and produced without hesitation. (See photos) A second surgery in January 2020 placing a lead in his right brain brought control to his left hand. This seemed to bring a close to Gary's previously-futile battle against his own brain for control of his arms and hands. As with any surgery, DBS carries with it fairly typical risks: post-operation infection, problems with the healing of the incisions, etc. But, as Gary and Sharon continued forward into the new life it seemed undue concern. By early 2020, Gary was not only back at work in his woodshop, he was utilizing the specialized, power tools of his trade with the same ease he'd known prior to the onset of Essential Tremors. He could again lift a mobile phone or a fork, fold a button into a buttonhole and unbutton it again. His life was again one of music, and his hands again became his craft, his method of creation, and his expression of art. Hope seemed to have bloomed and come to fruition, yet Gary's future took another turn, this one down a path that has yet to play itself out. As I type this today, I know that within a month, Gary will again resume the seemingly endless onslaught of doctor's appointments, surgeon's, and that the vicious pain assaulting him each and every day will continue, unabated. Gary's right vocal cord will remain paralyzed, altering his voice, and even more frighteningly, he will continue to choke multiple times per day simply trying to swallow liquids. Gary's hands are once again captive to Essential Tremor due to scalp infections. Initially small spots of white appeared along the surgical incisions developing into abscesses. With each new round of antibiotics, even if one spot would clear, in its place, more would come. The severity of the infections increased with time, and, with open wounds providing bacteria a potentially direct route into Gary's brain, the danger could no longer be treated the same way. So, rather than attempting to continue, with little success, treating individual infections as they arose, Gary's neurosurgeon brought in a plastic surgeon. Together they formed a plan to stop future recurrences of such infections altogether: they both agreed; a scalp transplant was necessary. This surgery not only necessitated the removal of key pieces of the DBS implant -- rendering it, for the time being, nonfunctional, but brought with it many additional complications of its own. It is Sharon, by Gary's side throughout it all, whose words do the best justice to her husband's current condition, and with which I will end the account of Gary's medical situation: “This part, the scalp transplant has been horrendous for both of us. There were 3 major wounds created by the 11 ½ hour surgery and it really took Gary down, very hard. We spent 5 days in the ICU Burn Unit, where they have great skills with skin grafts and wound care. He remained barely conscious, unable to move himself or even sip from his water glass, he was so weak and in pain. I stayed with him 24/7 during those days sleeping little, in a vinyl recliner beside his bed, unless our daughter came to relieve me. He pulled at things he shouldn’t trying to remove the neck brace, the Central Line and push at his head dressing or his leg where donor skin was peeled off to create his new scalp. He also had an 18 inch incision on his back from behind his right armpit arching down to his waist, where two drain tubes were stitched into his side. This cut was to remove a large piece of muscle, (more donor tissue), that the surgeon placed on his head just above his forehead like a shelf. It literally looked like a piece of meat with skin on and was there to bring circulation to his new scalp. Gary also had a large piece of rolled muscle in front of his ear and down to his jaw with an incision from there on the side of his neck to his clavicle bone ending with another drain tube. “My heart broke into a million pieces for him. Neither he nor I had any idea the surgery would be this huge and disfiguring, and, in his state, he wouldn’t see his extensive wounds for a week. As we left the hospital, Gary looked in the visor mirror and said, “Oh! I look like Frankenstein.” “The care he required at home from me was 24/7 for well over 6 weeks, with daily wound care nurses visiting to change his dressings and monitor his progress. Not only that, but in reaching Gary's carotid artery in his Rt neck to supply circulation to the donor tissue on his scalp, the plastic surgeon had, in his own words, said to me; “That part was rather a rough procedure, digging around with my fingers, pushing aside nerves and muscles to get to necessary vessels for profusion.” “We soon found out how rough it was as there was quite a bit of nerve damage done. Gary now has a paralyzed Rt vocal cord and his voice is very raspy and soft, he strains to make himself heard. He has been choking on beverages multiple times a day since surgery. But the worst side effect has been searing jaw pain. All of these symptoms were expected to dissipate when swelling around the nerves went down, but they have not, and it’s been 4 months now. With every first swallow of food or beverage Gary has severe pain, waaay past a 10 (on a scale of 1-10, with 10 being the worst you’ve ever experienced). He describes it as; “Like acid being poured along my lower jaw from the center to my ear.” “His pain seems last about a minute and is happening multiple times a day, it’s hard to watch. The plastic surgeon does not understand it, he told us he has not not seen this happen before. We were sent to an ENT (Ears Nose Throat) specialist who has said he doesn’t know the cause of it, let alone how to resolve it – yet. Further tests are to come in February… I won’t stop advocating until we get relief for him!” Sharon, has been a dedicated, compassionate hospice nurse for decades, she now watches her husband's suffering and faces the frustration of knowing she can neither heal him medically or help much with expenses (she receives a modest $206 in unemployment weekly). Because of being his caregiver, advocate, keeper of appointments and driver, and also because of the substantial risks posed to Gary by Covid or any other infection, Gary’s doctors are recommending she not work her job until it is safe for him. Though they've held on, financially, since the beginning of Gary's ordeal in 2019, the couple's finances have reached a point where money has become critical: with bills mounting and monthly expenses vastly larger than the small Social Security payment Gary receives each month. Gary and Sharon must start 2021 facing the stark reality that they not know how they'll pay the medical bills, this month's utilities, mortgage, insurances etc…. With plastic surgery in February or March and another surgery to reconnect his DBS implant as soon it as is safe, Gary also faces the dire possibility that he may never again experience life without Essential Tremors, nor life of any decent quality again; it won't be for lack of willpower or due to giving up in despair, it will be finances which dictate the path of his life from this point forward. This is why we as friends of Gary and Sharon, have come together to share their story and search for the kindness of others who may have the money to give that we do not. We sincerely hope you will consider assisting this wonderful, giving couple during this time of dire need. Each of them has impacted the lives of countless others in the most wonderful, positive ways; we hope that perhaps you might be among those who will impact their lives in a similar way. Thank you so very much for reading their story, and may you have a healthy, blessed year as we all look forward to the end of Covid-19. “I assure you; your assistance will not be wasted as Gary and Sharon live humble lives and are poster children for honesty and openness.” (David Priest)
Co-organizers (2)
Piper Foster
Organizer
Troy, OH
Gary L Kennedy
Beneficiary
Sharon Kennedy
Co-organizer