November is Care Partner Appreciation Month

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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.

Resources

Meghan Smith, LCSW created a handout of local resources and ideas for self-care timeouts. You can view, download, and print the document here.

The Supportive and Neuropalliative Care Clinic has a list of resources on their website too. You can see upcoming events and featured news articles, information for patients and care partners, and an additional list of resources.

The Parkinson’s Foundation has put together a list of resources for their November initiative, #BeASelfCareGiver. You can find the top ten list here.

Support Groups

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.

Educational Events

The Supportive and Neuropalliative Care Clinic hosts its Care Community Series on the second Tuesday of every month at 4:00 PM. Join them on November 9 to hear “How Meditation and Mindfulness Can Support Your Well-Being,” given by Jenine Camins of UQMindfulness. No registration is required. You can join via Zoom Video Conferencing using this link. Click here for the poster.

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.

New Faces in HD Clinic

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The HDSA Center of Excellence at the University of Colorado Movement Disorders Center hosts a monthly HD Clinic on the fourth Monday of each month. This clinic is an interdisciplinary clinic which means there are multiple specialists available for your appointment. These appointments last a little longer than usual appointments.

Dr. Lauren Seeberger founded The HSDA Center of Excellence at the University of Colorado in 2016. When Dr. Seeberger left the Univerity of Colorado in the summer of 2021, Dr. Emily Forbes took over as the director of the clinic.

Dr. Emily Forbes, Director of HDSA Center of Excellence

Emily Forbes, DO, MS is a board-certified neurologist with fellowship training in movement disorders. She attended medical school at NYIT College of Osteopathic Medicine. During medical school, she was awarded an American Medicine Scholarship and completed her Master’s Degree in addition to her medical degree. She completed her internship in medicine and residency in neurology at the University of Colorado School Anschutz Medical Campus. She completed her two-year fellowship at The University of Pennsylvania Parkinson’s Disease and Movement Disorders Center and the Philadelphia VA Medical Center Parkinson’s Disease Research, Education, and Clinical Center (PADRECC). Her research interests include understanding the genetic basis of neurologic disease which lends wonderfully to her new role as director of The HDSA Center of Excellence at the University of Colorado.

Kaitlin Smith, MS, CGC is a Neurology-trained Genetic Counselor at the University of Colorado Anschutz Medical Campus. She attending the Arcadia University/University of Pennsylvania Genetic Counseling program and is a board-certified genetic counselor. She completed a fellowship in Neurology at the University of Colorado Anschutz Medical Campus. Ms. Smith sees individuals and families with a variety of neurogenetic conditions, including Huntington’s disease.

Meghan Smith, LCSW has worked in the field since 2008. Her undergraduate work was with the March of Dimes Family Support Program at the Neonatal Intensive Care Unit at Children’s Hospital Colorado. Meghan earned her Master’s of Social Work in 2015 from the Metropolitan State University of Denver with a primary focus in Mental Health and an additional emphasis in grief counseling. From 2013-2018, Meghan created and managed a program that focused on serving individuals who have neurodevelopmental disorders like autism, and other developmental and intellectual disabilities to attain and retain employment in the Denver community. For the past 3 years, Meghan has worked in Neurology at the University of Colorado School of Medicine and UCHealth as a social worker serving patients and their families. Meghan is happy to be back with CU Medicine working with patients and families affected by Huntington’s disease.

2021 Hellos and Goodbyes

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The first of July is the start of a new academic year at the University of Colorado School of Medicine. It’s a bittersweet time as we welcome new team members and say goodbye to others.

This year, we are excited to have two new fellows joining up – Heather Heiser, MD and Antonia Pusso, MD. Dr. Heiser went to medical school at Michigan University at the Grand Rapids campus. She completed her Neurology residency at Ruch University in Chicago. Dr. Pusso obtained her medical degree in Charlottesville, VA and completed her residency training in Boston, serving as chief resident in her final year. Both new fellows will complete two years of fellowship training at the University of Colorado Movement Disorders Center.

Dr. Alex Baumgartner and Dr. Mike Korsmo completed their first year of fellowship and are currently starting their second year. We look forward to having them with us for another year.

Dr. Teresa Lee has graduated from the two-year Movement Disorders Fellowship and joined our faculty on July 1, 2021. Welcome to the team, Dr. Lee!

Finally, we are sad to announce that Dr. Lauren Seeberger has stepped away from the University of Colorado Movement Disorders Center. She joins family in another state and will be helping to develop an up-and-coming Neurology and Movement Disorders program. Dr. Seeberger contributed a lot to our program during her tenure here. She will be missed, but we wish her the best of luck on her next adventure.

There were many changes in July, but the Movement Disorders Center looks forward to another incredible academic year.

2021 Annual Research Retreats

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One of the roles of the faculty and staff in academic medicine is conducting research. In addition to seeing patients and teaching the next generation of neurology and movement disorders providers, faculty conduct research to identify new therapies and – ultimately – find a cure for the disease they treat.

On June 2, the University of Colorado Department of Neurology hosted its 11th Annual Research Retreat. This event allowed subspecialists, fellows, and residents an opportunity to share their ongoing research with their peers. In addition to the presentations, the department also hosted a poster session. In a virtual setting, faculty, staff, and medical learners gave brief overviews of their research projects.

On June 9, the University of Colorado Movement Disorders Center hosted its Annual Research Retreat hosted by Isabelle Buard, PhD. The MDC’s Research Retreat is for researchers only and includes clinician-scientists and bench scientists. Presenters give a brief overview of their project and then immediately answer questions from the audience (other researchers). The goal of this day is to develop and nourish collaborations in movement disorders research across different campuses and institutions in the state of Colorado.

The Research Retreat also gives the Movement Disorders Pilot Grant Recipients an opportunity to share their projects. Each year, the Movement Disorders Center formally asks for early-career researchers across Colorado to submit proposals for pilot grant projects related to movement disorders. These requests are intended to give researchers the funding they need to collect data for larger research projects. Awardees with well-developed projects are funded up to $10,000 and one year to complete their research projects. Many of the awardees have subsequently been awarded larger grants from larger organizations to continue their research.

If you are a researcher interested in learning more about our pilot grant program, our annual research retreat, or more about the research at our Center, please see our For Researchers page or join our mailing list.

Getting Back in the Community

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June was a wonderful month. The faculty and staff of the Movement Disorders Center were able to join the Parkinson’s community in person.

On June 6, 2021 The Movement Disorders Center participated in the Vitality Walk for the Parkinson’s Association of the Rockies (PAR). Providers, researchers, staff, and their families walked and ran in support of PAR. PAR is a local non-profit organization that provides education, exercise classes, equipment trials, and many more resources. This year PAR is celebrating 40 years of service to the Rocky Mountain Region.

You’ll see more of the Movement Disorders Center at upcoming PAR Educational events. Please see our Events page for a full list of our upcoming speaking engagements.

On June 12, the Parkinson’s Foundation hosted their Revolution Ride. For the first time, this event was held in Denver. Riders were able to join in person or virtually. The University of Colorado Movement Disorders Center was designated a Parkinson’s Foundation Center of Excellence in 2019. Being able to join them for an in-person event finally was very exciting.

We hope to continue making progress towards being in-person for our events soon. It was wonderful to see everyone in person again.

New Interdisciplinary Clinic Opening in Boulder + More Good News

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We have a lot to celebrate this month!

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.

Dr. Forbes Accepted to Clinical Faculty Scholars Program

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Congratulations to Dr. Emily Forbes on her acceptance into the Colorado Clinical and Translational Sciences Institute’s (CCTSI) Clinical Faculty Scholars Program (CFSP). This program enrolls up to five junior faculty members each year. The program helps young researchers obtain grant funding for their career growth or their first independent investigator-initiated project. Often these are K-awards or R-awards which are funded by the NIH. These can also be awards from large non-profit organizations. The CCTSI trains these budding researchers through guided project development, educational seminars, grant writing classes, and mentorship participation.

Dr. Forbes’s project will build a Neurogenetics database. The first goal will be to characterize genetic causes of Parkinson’s disease in the University of Colorado’s patient population. She will follow this group over time to see how they respond to treatment based on their genetic variant. She will build this database to include phenotypic (observable characteristics) and genotypic (genetic characteristics) information across different specialties in Neurology. This will lead to a department resource for genetics research. Her long-term aim is to develop a tool to advance fair and the best genetic testing for patients. This will also help to provide thorough genetic counseling. This tool will make clinical trials for disease-modifying treatments available to more patients and quicken the rate of developing new therapies. Additionally, it will widen the availability of clinical trials to patient populations.

Other Movement faculty alumni of the CFSP program include Dr. Michelle Fullard and Dr. Samantha Holden and former movement disorders faculty, Dr. Brian Berman, and Dr. Benzi Kluger.

Being part of a medical school means that in addition to seeing patients, our faculty are also involved in additional pursuits. One of these pursuits is conducting clinical research related to their field. Most research falls into two categories: clinical trials and investigator-initiated research. Clinical trials are a type of clinical research that aims to determine the safety and effectiveness of the medication, devices, and treatment regimens. Investigator-initiated research starts with new ideas that the researcher comes up with themself. The researcher then is responsible for creating a trial to test their idea and then carrying out the trial. All research must adhere to strict rules and regulations. You can read more about the research here.

Research Update | The Relationship Between Olfactory Dysfunction and Constipation in Early Parkinson’s Disease

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Written by Alex Baumgartner, MD

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.

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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.

My Life with Parkinsonism

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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.   

Board Certification

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Congratulations to our two first-year fellows, Alex Baumgartner, MD and Michael Korsmo, MD, for passing their neurology board examinations through the American Board of Psychiatry and Neurology!

When we select fellows for our training program, they must be eligible to take these board examinations. This means they must meet all of the minimum requirements to take the exam by the start of their fellowship training. Fellows typically take the test towards the end of their first semester which is the earliest the test is offered.

Board certifications are important because they promote and assess the competence of physicians when beginning and throughout their careers. Board-certified physicians must provide proof that they are continuing their education through Continuing Medical Education credits and are recertified at set intervals throughout their career.

While board certifications are not required to practice medicine, they are an extra step many physicians choose to take. The certifications demonstrate the physicians are keeping up with the most recent advancements in their specialties and their desire to provide high-quality care to their patients. Board certifications are specific to each specialty and therefore maintain more specific standards to maintain certifcation.

All of the movement disorders specialists at the University of Colorado Movement Disorders Center are board-certified in neurology.

Say congratulations to our fellows if you see them in clinic!