The University of Colorado Movement Disorders Center will host its annual Huntington’s Disease Education Day on October 7, 2023. More details will come soon. Follow our Facebook page to learn more.
On May 17, the MDC hosted its annual Research Retreat. Each year, the Movement Disorders Center brings together basic science researchers and clinical researchers to discuss the research going on for Movement Disorders across campus and across the state of Colorado. Many of these projects are still underway, but we look forward to sharing results with you when we are able.
As we move into summer, we look forward to seeing the Movement Disorders Community at many great, annual events.
The Movement disorders neurologist attended the American Academy of Neurology’s Annual Meeting in Boston or virtually. This is an opportunity for neurologists to come together and learn from each other. The conference highlights topics such as interesting research and upcoming therapies. Dr. Kern, Dr. Fullard, and Dr. Holden presented at this year’s conference. Our providers also use this as a chance to network with their peers from across the country.
In honor of Administrative Professionals Day, thank you to the amazing administrators in the Movement Disorders group – our research coordinators, our schedulers, our clinic management, our extensive research team, and the academic administrative team. Thank you for all that you do!
Some exciting news about the Anschutz Campus – Garage 2 opened on April 26. The garage is for patient parking and is located outside of the Anschutz Outpatient Pavilion. We hope this makes your experience as a patient more enjoyable; we’ve been waiting for the garage to open for a while.
More details are coming soon about our 10th Annual Parkinosn’s Disease Symposium this fall. We look forward to great speakers and fund door prizes.
We are also excited to announce that we have set a date for our annual Huntington’s Disease Education Day. Mark your calendars for October 7, 2023.
The Movement Disorders Center is now on Facebook!Follow our page to learn about Movement Disorders news as it happens.
April 11 is World Parkinson Disease Day. The faculty and staff at the University of Colorado are proud to work with the Parkinson Community. While patient care is a large part of our care for the Parkinson’s community, there is a lot more they do outside of the clinic.
The Anschutz Medical Campus is a training facility for upcoming medical providers. Our faculty participates in the education of young medical students and residents. Additionally, we have a movement disorders fellowship program to train the next generation of movement disorders neurologists. In addition to becoming part of our own faculty, these trainees have gone on to serve movement disorders communities in underserved areas and continue clinical research in their own practices. You can learn more about our program and its importance by visitng our Fund-a-Fellow page.
Our faculty are also leading research to find new therapies or better understand Parkinson disease. This research can include trials of potential new medications or devices. It also includes research projects initiated by our own faculty that help patients and care partners. If you are interested in learning more about our research, we have a research catalog and a research website for you to view. If you are interested in participating in clinical research, contact our research recruitment team. Many resources are available in English and Spanish. e-mail: NeuroResearch@cuanschutz.edu phone: 303-724-4644 webform
In 2022, our faculty provided 64 formal talks to patients, care partners, medical providers, and medical learners. These talks were regional, national, and international. Our faculty finds so much value in providing access to updated information to the Parkinson’s community to help them take control of their health. If you are interested in having someone speak to your group, please reach out to firstname.lastname@example.org.
In addition, we will host our 10th Annual Parkinson Disease Symposium on October 28, 2023. Follow our Facebook page for updated details. You can look for an event page on our website soon. We look forward to an informational and exciting day with many special extras this year.
The University of Colorado Movement Disorders Center looks forward to continuing these missions in 2023 and beyond. We look forward to connecting with you.
The University of Colorado Movement Disorders Center received an award from the Parkinson’s Foundation for the Highest Team Participation for the Parkinson’s Foundation Palliative Care Education Course. The award was presented at this year’s COE Leadership Conference and was accepted by Ryan Khan, a chaplain who works closely with our Palliative Care team.
Congratulations to Dr. Michelle Fullard who has received the 2022 Lorna Grindlay Moore, Ph.D., Faculty Launch Fund award. This award is dedicated to research in women’s health across the lifespan. Proposals were open to faculty in any of the CU Denver or Anschutz Medical Campus schools or colleges. Dr. Fullard’s project and proposal for Parkinson disease ranked highest among all applicants.
We look forward to sharing more about Dr. Fullard’s project soon.
Congratulations to Dr. Alex Baumgartner for being awarded the CCTSI Pilot Grant Award for his project titled “Naturalistic sleep assessed by wearable devices and direct recording of the subthalamic nucleus in Parkinson’s disease.” This grant will expand on the research that Dr. Baumgarter did with the University of Colorado Movement Disorders Center Pilot Grant award that he received in the fall of 2020. We look forward to hearing the results of his study in the future.
Through the University of Colorado Movement Disorders Center Pilot Grant Award, the MDC awards selected early-career clinical and bench researchers a small, monetary award. Awardees have included young researchers in different specialties that overlap with movement disorders. This award allows researchers to collect initial data they might need to win more prestigious awards with larger budgets. Previous awards have led to publications in scholarly journals and funding from the NIH and Dystonia Coalition, among others.
Each year the MDC puts out a request for proposals. Interested applicants fill out a detailed proposal and submit it. The MDC faculty review each proposal and selects proposals that are within budget, are well-planned, and are valuable to the movement disorders community. The pilot grant process gives young researchers exposure to the grant application process. Additionally, it helps garner career-long interest in movement disorders research across disciplines.
For researchers who may be interested in applying for the Movement Disorders Center Pilot Grant Award, please join our Movement Disorders Center to be the first to hear about the Request for Applications and more opportunities for collaboration. More information can be found here.
For our movement disorders community, you can learn more about the phases of research and how to participate here. You can find a list of our current studies here.
If you are interested in supporting the Movement Disorder Center Pilot Grant Program, please contact our CU Foundation office (303-724-9146) or visit their donation website.
November is Care Partner Appreciation Month and we really appreciate the Care Partners in the Movement Disorders Community. We are grateful for all they do to support our community and want to make sure they are taken care of too.
In order to make sure those care partners are getting the care they need, we’ve put together a list of resources and self-care ideas. These resources are intended for Care Partners of any movement disorders unless otherwise noted.
A Support Group for Care Partners led by Cari Friedman, LCSW is offered virtually on the 3rd Tuesday of every month at 2:00 PM. Open Zoom Video Conferencing and enter the meeting ID (96935032229) and password (916562).
Another Support Group for Care Partners is led by Malenna Sumrall, PhD and Care Partner Advocate on Mondays at 7:00 PM. Please email Malenna.Summrall@cuanschutz.edu for more information.
The Parkinson’s Association of the Rockies is offering its third annual Care Partner Summit Exclusively for Care Partners of People with Parkinson’s Disease. This event will be Saturday, November 20 from 10:00 AM – 1:00 PM at the Hyatt Regency Aurora-Denver Conference Center. You will have the opportunity to hear Dr. Christina Vaughan of the University of Colorado Supportive and Palliative Care Clinic speak. You can register here.
Thank you to all of the Care Partners in the Movement Disorders Center. You are an important part of our community. We cannot say it enough.
Our interdisciplinary Boulder team completed the Parkinson’s Foundation Team Training. This course was designed by the Parkinson’s Foundation to increase knowledge of Parkinson’s disease. The course is also designed to encourage collaborative care. This was an intensive course that ran throughout the Spring. We look forward to enrolling more of our interdisciplinary team in the future.
Our Boulder team will begin hosting an Annual Parkinson’s Disease Interdisciplinary Clinic. This clinic is designed specifically for individuals with Parkinson’s disease. During this annual visit, patients receive a standardized set of evaluations by their movement disorders specialist, Physical Therapy, Occupational Therapy, and Speech Therapy. The goal is for people with Parkinson’s disease to go through this clinic yearly. This will assist in tracking the progression of Parkinson’s disease more accurately and integrate the perspectives of the interdisciplinary team when offering our recommendations for activity-based and pharmacological treatments. Our hope is that this input will help patients maintain their optimal function and quality of life. This clinic is also offered at our Anschutz Medical Campus.
Congratulations to Michelle Fullard, MD and Isabelle Buard, PhD for receiving the University of Colorado Department of Neurology’s Intradepartmental Grant. This award has been offered since early 2016 to assistant and associate professors. This grant is designed to give the junior faculty a jumpstart on new research years and allows for protected time to prepare a grant application, write a peer-reviewed journal article, develop collaborations and/or perform any other research task that may otherwise be challenging because of time.
Dr. Buard’s research is “Investigating cortical sleep patterns disruption after traumatic brain injury under the mentorship of Dr. Benzi Kluger and Dr. Jeff Hebert. Dr. Fullard will conduct Examining gender differences in therapy preferences and risk tolerance in Parkinson disease” under the mentorship of Dr. Maureen Leehey. Dr. Fullard recently completed an interview with Davis Phinney Foundation about “Removing Barriers to Deep Brain Stimulation for Women with Parkinson’s.” You can watch the full interview on YouTube on Davis Phinney Foundation’s channel.
In a recent issue of the journal Movement Disorders, colleagues and I published a study examining the relationship between two of the most common ‘non-motor’ symptoms of Parkinson’s disease (PD): decreased sense of smell (olfactory dysfunction) and constipation. It has been known for some time that these symptoms often start several years or even decades before the typical ‘motor’ symptoms of PD, which include tremor, stiffness, and slow movement. Going along with this, accumulation of the abnormal protein alpha-synuclein, which is thought to play a critical role in the development of PD, have been found in the nasal passages and GI tracts of PD patients before it is found in the brain. This has led many to hypothesize that PD may actually begin in the nose or in the gut and spread from there to the brain.
We wanted to explore whether we could find evidence that for some people, PD begins in the nasal passages while in other people, it begins in the gut. We hypothesized that if people had PD originating in the nasal passages only, they would have only loss of smell and not constipation. On the other hand, if PD originated in the GI tract only, they would have constipation but not loss of smell. We looked at data from the Parkinson’s Progression Markers Initiative (PPMI), which collects information from patients who have recently been diagnosed with PD.
We found that at the time people are diagnosed with PD, they tend to have problems with smelling and constipation to similar degrees. That is, people with worse sense of smell also tend to have worse constipation, and those with minimal loss of smell tend to have mild constipation. This finding actually went against our hypothesis. There may be a few reasons for this. The first is that the time of diagnosis of PD (based on tremor, slowness, and stiffness) may be too late to detect a difference in smell and constipation. Even if PD begins in either the nose or the gut, symptoms in the other location may have already ‘caught up’ with the first. The second possible explanation is that PD may begin in both locations at about the same time. This is called the dual-hit hypothesis, and has gained popularity in recent years. In the future, we hope to expand our research to help elucidate where and when the earliest signs of Parkinson’s occur.
This piece was written by Janet Raban. We are excited to share her story and look forward to sharing more stories here as well. Below, Ms. Raban shares her experience and some words of inspiration. Thank you, Ms. Raban, for sharing.
In November 2001, I experienced my first symptoms of Parkinson’s Disease (PD), a slight tremor of the ring finger and pinky of my right hand. My primary care physician referred me to a neurologist and the journey began. The neurologist insisted I had MS and put me through a battery of tests that included two brain MRIs, one cervical MRI, and a spinal tap, none of which exhibited any plaquing in the spinal fluid (a sure sign of MS), yet she persisted. So, I asked to be referred to the guru of all MS specialists in Denver, that being Dr. John Corboy at UCHealth. This was my first lesson in advocating for myself, which has become routine since that day. The rationale for self-advocacy is it keeps you in touch with your emotions, your physical health, and your sense of control over the circumstances.
After only five minutes with Dr. Corboy, he reassured me that I did NOT have MS and sent me to see his “colleague across the hall.” Dr. Maureen Leehey, a movement disorders specialist, has not only treated my Parkinsonism since then day I met her but has become a dear friend. At one point, she asked if I was interested in a drug trial for patients who were recently diagnosed and had not started on any PD drugs. That was my first foray into drug trials that have since spanned the course of my disease.
Critical to the management of my disease was my support system, namely my husband, Ed. He has been by my side every step of the way. He has attended a majority of appointments that I had over these last 20 years. We even traveled to Connecticut for one drug trial. He has been my rock, especially when I found myself in the depths of despair or just to listen to my rantings with a cool head and a loving heart.
Have there been moments of despair? Yes, of course, but they have been far outweighed by times of hope in the great advances in my overall health (thanks to the expert administration of appropriate medications at the right time by Dr. Leehey) and to research and surgery. After more than 20 years with PD, I decided to have Deep Brain Surgery (DBS). I was maxing out on my meds and DBS offered me the opportunity to reduce the amount of medication I was taking and a device that also enabled me to have some modicum of control over my disease. I have always told my daughter that the measure of your character is in how you deal with adversity. Meet it head-on!
You must advocate for yourself. You can’t let the disease control your life. You have to at least TRY to control IT. So, as a result, I decided on the surgery. A window of opportunity opened, and I climbed in. Your expectations may be higher than mine. Your fears may be greater than mine. Your lifestyle may be different than mine. But what we do have in common is an insidious disease, a disease that intimidates, instills fear, a disease that saps your energy and hope for a “normal” future. Be courageous, self-advocate, and ask lots of questions, that’s the only way you can get the answers you need to decide how your future will play out. You can control it, you may not overcome it, but you have a choice as to how you handle it. I made a choice to have DBS surgery and I don’t regret it. You have choices too. Be courageous, take the leap of faith, trust your doctors to help you make those decisions. You won’t regret it either.