Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

Posts (22)

Oct 19, 2011 · Mayo Clinic Patient Creates Documentary to Educate Others on Frontotemporal Dementia

Susan Grant and Cindy Dilks from “Planning for Hope” and Val Lowe, M.D., Mayo Clinic Department of Radiology, examine Susan’s PET Scans.

In Frontotemporal Dementia (FTD), areas of your brain (the frontal lobe and temporal lobe) shrink, causing progressive speech, language, personality and behavior problems, as well as a decline in your thinking and reasoning skills (cognitive skills). It is often misdiagnosed as a psychiatric problem or as Alzheimer’s disease, but FTD tends to occur at a younger age than does Alzheimer’s disease, typically between the ages of 40 and 70.

Susan, a Mayo Clinic patient diagnosed with FTD, has created a 1-hour documentary film to educate others. In her words, “Instead of going silently into that good night, my caregiver Cindy and I have dedicated two precious years of what remains of my life to creating a film, ‘Planning for Hope.’ Bold and arresting, it is aimed at unveiling the truth about Frontotemporal Disease, addressing the surrounding issues and controversies, and offering hope to those affected.”

In the film, people who suffer from FTD and their families share openly about their struggles, how they deal with the discrimination heaped upon them, their confusion, and their pain. These stories are blended with updates on the latest medical and scientific advances.

Susan says, “Getting a diagnosis of a terminal disease is so very hard, but hopefully through the film, we can help make a difference.”

View a 60-second promo for the film below, or go to the Planning for Hope web site to view the full documentary.

Related Diseases
Related Departments

Feb 15, 2011 · Jesse Jensen's Deep Brain Stimulation Story

When he was just five years old, Jesse Jensen of Missoula, Mont. began having tics, or involuntary movements, and was diagnosed with Tourette Syndrome .
The tics were so violent they caused him intense neck pain and kept him out of regular school for 10 years. Last spring, Mayo Clinic neurosurgeon Kendall Lee, M.D., and his team performed deep brain stimulation on Jesse. His tics have stopped and he was able to cut back on the majority of his medications. His family says the surgery “gave Jesse a life free of Tourettes…a life we never thought was possible.” Jesse’s family put together the video below to tell Jesse’s story.

Related Diseases
Related Treatments
Related Departments

Nov 25, 2010 · Jacob Harpel's Thanksgiving Story

Eight-year-old Jacob Harpel from Glencoe, Minn., was diagnosed with a plum-sized brain tumor the day before Thanksgiving last year. He had aggressive brain surgery at Mayo Clinic in August to remove the tumor; with the surgery he had a 50% chance of losing his peripheral vision on one side and a 50% chance of speech and comprehension deficits. Within 24 hours of the surgery, Jacob was playing the piano at Saint Marys Hospital, and just three days later he went home tumor-free.

This week, exactly a year from the initial diagnosis, Jacob had follow-up appointments at Mayo Clinic — he’s still tumor-free, his vision is 20/20 including peripheral vision, he has no speech or comprehension deficits and he’s seizure-free. It’s quite a different Thanksgiving for the whole Harpel family.

View the videos below to hear the Harpel family tell their story, including their description of playing “Just Dance” on the Wii during Jacob’s video EEG, Jacob saying that the surgery was easy, “I just slept the whole time,” and the support of their family and friends. And as for their Mayo Clinic physicians? Jacob says about Dr. Nicholas Wetjen, his pediatric neurosurgeon – “I LOVE that man!”

Related Diseases
Related Departments

Nov 19, 2010 · Helping the Girls of the Congo: Part Thirteen (Saturday & Thanks)

The following is another update from the Mayo Clinic team that was in the Democratic Republic of the Congo last week, written by Dr. Deborah Rhodes. While this is the final update from their trip, please check for additional posts next week including video interviews with some of the team describing their experiences.

“After a long drive through the beautiful countryside of Rwanda, in a fierce rainstorm that only made the hills more luminous, we reached Bujumbura. We said good-bye to our good friends and trusted drivers, Bercky and Benge, and boarded the plane. We were so anxious to see our families, but we were quieter than usual. We stared out at military forces boarding a neighboring plane and thought about how much more needs to be done.

Our flights were seamless, as has been our entire itinerary. For this, and for so many other things, we have Jane Gould to thank. Without her, we would still be trying to book our flights. She was our greatest defender from bureaucracy, our solver of any problem, and our most enthusiastic advocate when our own belief that this trip would happen wavered.

We have so many others to thank:

  • Jim Hodge, who initially said, “We can find a way to make this work.”
  • Roger Dearth, who found a way to make it work. Roger kept us smiling when the chips were down. When we realized we needed to purchase additional pieces of critical cystoscopy equipment 2 days before our departure, Roger made them appear by the next morning.
  • Shirley David, from Carlson Wagonlitt, who answered hundreds of phone calls and coordinated our flights.
  • Terry Gorman, who connected us with Tom Griffin, who worked his magic to get 5 pallets of medical supplies to travel thousands of miles and arrive safely at a destination with no street address.
  • Mayo Medical Laboratories, for all the help they provided in delivering the pallets of medical supplies.
  • Leo Wagner and the staff at the Mayo Warehouse, for helping us to collect and pack the supplies.
  • Beth Creedon, for all of her help collecting and cataloguing the supplies.
  • Federal Express for their generosity and precision in delivering the pallets.
  • Rebecca Buss at Rochester Medical, for her generous donation of supplies.
  • Dr. C. R. Stanhope, who was instrumental in gathering many of the medical supplies and advising us on appropriate goals for an international medical mission.
  • Paula Boos, without whom our six boxes of medical supplies would never have made it on the plane.
  • The Stryker company for their generous donation of cystoscopy equipment.
  • The Stortz company for their donation of supplies.
  • Donna Springer and Etta Meinecke, for protecting us against all things infectious with innumerable vaccinations.
  • Stacey Rizza, for her outstanding lecture on HIV transmission and prophylaxis and for her donation of medications.
  • David Claypool and the team at Preferred Response, for providing us with safety advice and medications for any emergency (thankfully, we did not need the Imodium).
  • Mitch Nelson, for security advice in Burundi and DRC.
  • Jan Swanson and Mark Williams, for helping us to prepare for the trauma we would encounter.
  • Elizabeth Rice, who recognized the importance of documenting this trip, and along with Makala Johnson, assisted with this blog.
  • Dr. Bobbie Gostout, Dr. Don Hensrud, and Dr. Robert Jacobson, for supporting our trip.
  • Lenae Barkey and Jim Yolch , for solving the administrative hurdles on our behalf.
  • Our spouses, for their support, patience and sacrifices: Beth Creedon, Jill Dowdy, Julie Fischer, Ned Groves, Bill McGuire and Mariana Trabuco.
  • Shirley Weiss and John Noseworthy.
  • Carolina Owens, from the U.N. Office of Special Representative of the Secretary-General for Children and Armed Conflict.
  • Eve Ensler and V-day, the model for effective, courageous, transparent and noble activism – words cannot express our admiration for you.
  • Christine DeSchryver, an angel warrior, our hero.
  • Pat Mitchell, for telling me the story that launched this trip and connecting me with Eve.
  • Our anonymous benefactor, without whom I would still be crafting a letter to Ben Affleck!”
  • Nov 18, 2010 · Helping the Girls of the Congo: Part Twelve (More from Friday)

    The following is another update from the Mayo Clinic team that was in the Democratic Republic of the Congo last week, written by Dr. Deborah Rhodes .

    Dr. Sean Dowdy and Dr. Emanuel Trabuco had another long day in the OR, with two large fistula repairs and a radical hysterectomy for advanced cervical cancer – what would be an easily preventable disease if Pap smear screening was available. We wrapped up our clinical and teaching work, and then Dr. Mukwege called us together for a final meeting. Earlier in the day, we had seen a magazine in his office in which he appeared on the cover. One sentence in the article stuck in our minds. It said, “Many visitors come here to eat sandwiches and cry, and then they return home.” We had brought a container each day with a sandwich for our lunch, and we had certainly shed our fair share of tears. But we were determined not to be the next in a long line of passive sympathizers. Dr. Mukwege presented us with a flag of the DRC and his words reassured us that he understood our intent and commitment to build a long-lasting relationship in support of Panzi.

    As we were walking out of the hospital, Dr. Mukwege’s secretary ran up to deliver a message to him. She had just received an e-mail on which she was apparently copied inadvertently. The e-mail, from an American organization at which Dr. Mukwege is scheduled to speak, conveyed concern that his remarks might stray into the causes of the conflict in the DRC rather than strictly the medical response. He sat down on a bench, shook his head and smiled. A four-year-old boy wandered over and lay his head down on Dr. Mukwege’s lap. I remembered this boy. On my first day at Panzi, I almost tripped getting out of the car as two little arms grabbed me around the knees. I looked down, and a boy was grinning up at me. He took my hand and led me into the morning prayer service, but then we were separated. Now, Dr. Mukwege stroked his head while we talked. He lay perfectly still for 45 minutes, his eyes closed in contentment. In my right peripheral vision, I saw a young woman staring at him, knitting and undoing the same small crocheted hat as if in a trance. At the age of 15, she had been forced to watch rebel forces kill her entire family and village. She was taken by the forces and held as a slave, during which time she was impregnated by her captors. This boy was the result of that pregnancy. She would stand close enough to watch her son, but could not bring herself to get close enough to mother him. They now both lived at Panzi Hospital. A few days earlier, I had seen him jump into Christine’s car at the end of a long day. She told him she needed to leave, but he refused to let go of the steering wheel. “Take me home, Mama Christine,” he pleaded. As she pulled out some candy to coax him out of the car, there were tears in her eyes, even though I’m sure she has witnessed this routine innumerable times. How could you watch these things day after day, year after year, and not have an opinion on the genesis of the problem or the outline of a solution? Dr. Mukwege had always intended to follow in his father’s footsteps and become a pastor. But he realized that he could not care for peoples’ spiritual needs if their physical needs were so great. And so he turned to medicine. Yet it is clear that no amount of medical care – nor the food and safe haven that he provides – can solve this. The solution, ultimately, will require an open discussion of the root causes of this conflict without fear of reprisals.

    On Friday night, we drove to Christine’s mother’s house, overlooking beautiful Lake Kivu. The house where Christine was born had been destroyed in an earthquake several years earlier, but a new house had been built just above it. We were joined by Eve, Christine, and Elaine Doughty (the trauma therapist from San Francisco who is training the staff at City of Joy). Christine’s mother treated us to an incredible Congolese dinner, complete with tilapia, feuilles de manioc (cassava leaves), and red beans. Dr. Mukwege arrived and gave the most eloquent tribute to Eve and Christine. Christine stood up and said that her faith was starting to come back. She was referring to a story she had told us the night we arrived. She had been handed a six month-old baby who had been raped. She cradled the baby and drove quickly to Panzi hospital, but the baby had already died. She cried out to God to ask how this could be happening. Alysa, a young girl who had arrived at the hospital at the age of 8 after she and her mother were attacked in their village, ran to comfort Christine. Alysa said, “Christine, sometimes the clouds cover the sky, but the sun is still there.” I had not known or even heard of Christine at the time I began planning this trip, but I recognized this story. I asked Christine if this had happened in May of 2009. She said yes. This was the same story that was told to me by Pat Mitchell in Rochester, Minnesota in late May of 2009. At the exact moment that Christine’s faith had faltered, this story had traveled thousands of miles and lit a flame that we carried back to her. As Bercky said to us when he first picked us up in Bujumbura, it will take many sticks to light this fire.

    Dancing is a great part of the culture in DRC, and the therapy for the survivors. All week, Eve had warned Dr. Sean Dowdy that she would have him dancing by the end of the week. Those of us who knew Sean were skeptical, but we have witnessed many miracles this week. When we got back to the lodge, we were all very tired. There was no dancing. And we all simultaneously said…..’next trip.'”

    Nov 17, 2010 · Helping the Girls of the Congo: Part Eleven (Friday)

    The following is another update from the Mayo Clinic team that was in the Democratic Republic of the Congo last week.

    “We started the morning surrounded by the staff and patients of Panzi, gathered in the courtyard for morning prayers. We looked out on the beautiful women wrapped in colorful pagnes. We felt like we understood Bercky’s inspirational devotion. Then Dr. Mukwege invited Dr. Phil Fischer to give our thanks and good-bye in Swahili. Dr. Fischer responded that the Bible says we should love God with mind, body and heart. This week, we have seen God’s love as we see all the staff here teaching, healing and caring for minds, bodies, and hearts. We will leave here with them in our hearts, and we leave half of hearts here with them. It was beautiful benediction and everyone cheered.

    Dr. Fischer evaluating a 4-day old infant with vomiting, Panzi Hospital

    We then joined the women survivors for morning dancing and singing in the courtyard, and we were welcomed as part of the group. Dr. Sean Dowdy and Dr. Emanuel Trabuco went to the OR to facilitate the ongoing adoption of the new cystoscopy instruments. Dr. Fischer made rounds and did more teaching, as did Dr. Doug Creedon. Lois McGuire, R.N., C.N.P., gave a lecture of incontinence. Dr. Deb Rhodes met with Bev, the administrator for Panzi, to discuss long-term strategies. Lois also played tic-tac-toe with some young girls at the hospital.

    Lois McGuire, R.N., C.N.P., giving a lecture on incontinence, Panzi Hospital

    We are leaving the hospital a little earlier than usual today in anticipation of a traditional Congolese farewell feast at the home of Christine’s mother. We are so sad to realize that we will be leaving early tomorrow. We would like to thank beyond words the individuals without whom this trip would not have happened – please check back for our final post from Amsterdam so that we can acknowledge the extraordinary contributions of those in Rochester and beyond who are as devoted to this cause as we are.”

    Nov 16, 2010 · Helping the Girls of the Congo: Part Ten (Thursday)

    The following is another update from the Mayo Clinic team that was in the Democratic Republic of the Congo last week.

    Housing for the women waiting for surgery at Panzi Hospital, Democratic Republic of the Congo

    “In the car on the way to Panzi, we had time to discuss with Dr. Mukwege a plan for continued collaboration between our group and Panzi. He had told us earlier in the week that one of the most important goals for his hospital and staff is to establish a strong research program at Panzi, which in turn will attract important government recognition and funding. He also wants Panzi to serve as a standard for high level, accountable care throughout the DRC. After morning report for the various pediatric, medical, and surgical services, Dr. Mukwege called a meeting of all the staff and our team. He challenged his staff to work with us over the remaining two days to identify a strategic plan for developing research collaboration, as well as goals for their own academic progress. We then had a chance to express our appreciation and admiration for the staff and the work they are doing.

    Following this, Dr. Sean Dowdy and Dr. Emanuel Trabuco headed to the OR. They were able to demonstrate the assembly and use of the new cystoscopy set that we brought for the hospital. The cystoscopy worked beautifully, and the OR staff cheered when they saw the clear images on the screen. This was a very complex case of an 18 year-old woman who had lifelong urinary incontinence, due to an extra ureter emptying into the vagina. The team was able to divert this ureter to the bladder. When she wakes up from surgery, she will be dry for the first time in her life.

    We got a glimpse of the extraordinary daily demands on Dr. Mukwege. After morning devotions, rounds, and staff meeting, he began his outpatient gynecology clinic. He then joined Drs. Trabuco and Dowdy in the OR, and then returned to the outpatient clinic. He was then called to OB for a delivery, and then back to the outpatient clinic. He was then called to the OR for a difficult case in which Dr. Dowdy and Dr. Trabuco had discovered unexpected anatomy and were requesting his input. He then returned to the clinic, where he and Lois saw a total of 50 patients by 5:30 p.m.

    Bedside rounds in the OB ward with medical students, Panzi Hospital

    Dr. Doug Creedon went to the inpatient OB-GYN ward and did bedside teaching and lectures with the medical students. Dr. Phil Fischer spent the day teaching pediatrics to the medical students – the crowd of students following Phil grows daily. Dr. Deb Rhodes spent the day in the cardiology clinic and worked with the internal medicine staff to establish ideas for future collaboration. The Mayo and Panzi staff were so enthusiastic about the project ideas, and we later discovered that 3 staff members have signed up for English lessons starting Monday so we can better communicate.”

    Nov 15, 2010 · Helping the Girls of the Congo: Part Nine (More from Tuesday)

    We are happy to report that the Mayo Clinic team in the Democratic Republic of the Congo arrived home safely late yesterday. We will continue to post their updates from the trip throughout this week.

    Morning Prayer at Panzi Hospital

    “Behind the operating rooms is an expanse of grass and circular shelters consisting of a thatched roof without walls and a fireplace in the center. This is the heart of Panzi Hospital. It is where the women and children who have survived rape live together, some for months and some for years, to await the time for their fistula repair. Where despair and defeat should pervade, there is color and singing and dancing and praise. These women and children are a family to each other, and Esther is the one who nurtures them and brings them back to life and safety. Every morning, she leads them in a ritual of chanting and swaying and stomping and clapping that erupts into laughter, catharsis and play. Young mothers dance as tiny feet peek around their waists, their babies swaddled to their backs. Children rush to take your hands and dance. Old women join in the circle.

    We head back late in the evening for dinner with Eve, Christine, and Elaine. Elaine has just arrived from San Francisco. She is a trauma therapist who will do training workshops with the ten Congolese women who will become the staff and counselors at City of Joy. City of Joy is due to open in February, and there is much to be done, both in terms of training and construction that has been delayed by shortages of basic building supplies. Eve and Christine are routinely working 14 hour days. Our evenings together are dizzying exchanges of questions and ideas, and the jumble seems by morning to lead to measurable steps forward. We have had many conversations with residents of DRC about the complex political and economic forces that have led to this 12-year war. The U.N. is spending over 2 million dollars a day for peacekeeping forces, and yet the violence continues. But it would likely be far worse without these forces. It is hard to see any end in sight without a radical shift in the political structure and the distribution of profits from the rich mineral deposits.”

    Contact Us · Privacy Policy