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

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

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.   

6th Annual Parkinson Disease Symposium

The Movement Disorders Center (MDC) hosted its 6th Annual Parkinson Disease Symposium on Saturday, October 26 at the Bruce Schroffel Conference Center. The annual conference was co-hosted by the Parkinson’s Foundation and was the first since MDC achieved the Center of Excellence designation.

MDC welcomed 290 people with Parkinson Disease, care partners, and family members and 43 volunteers and representatives from partnering community organizations. These organizations included Davis Phinney Foundation, Parkinson Association of the Rockies, Rehabilitative Rhythms, Reconnect with your Body, LSVT Global, Parkinson’s Pointe, and PD SELF.

The conference included talks about Etiology and Medications (Teresa Lee, MD), Genetics (Lisa Deuel, MD), Hospital Stays and Surgery Following a PD Diagnosis (Michelle Fullard, MD, MSCE and Jessica Barr, PA-C), Eye and Vision Problems (Erin Van Dok, O.D.), Research (Maureen Leehey, MD, FAAN), Sex and Intimacy (Susan Coates, Susan Coates Coaching), and Sleep (Brian Berman, MD, MS, FAAN). The day was emceed by Lauren Seeberger, MD, FAAN.

“Best symposium attended in a long time. Presentation length just right to cover topics and maintain attention. Enjoyed the variety of topics. Speakers presented well and able to relate to PD individuals and interject a bit of humor.”

Considering this year’s at-capacity conference room and an inability to accommodate all who want to attend, the symposium will be moving to the CU South Denver campus for 2020. While this may be farther away for some of our attendees, the new location’s amenities promise to be a great match for the needs of attendees and the conference.

The 2020 symposium will be Saturday, October 3. This year’s presentations and slides can be found on our website and on our YouTube channel. You can check our calendar for other upcoming events.

“We are new to PD and are thrilled to find out there are awesome resources available such as this conference.”

MDC Designated a Parkinson Disease Center of Excellence

The faculty and staff at the University of Colorado Movement Disorders Center (MDC) are excited to announce we have earned the designation of Parkinson’s Foundation Center of Excellence. Dr. Lauren Seeberger and Dr. Maureen Leehey will serve as co-directors.

The MD is now one of 34 center in the United States and one of 48 sites internationally. 

MDC showcased its commitment to the criteria of a Parkinson’s Foundation Center of Excellence throughout the application process. These criteria include practicing at the highest level of evidence-based patient care, conducting relecant research that serves patient priorities, leadership in professional training, and educating patients and the community through outreach programs. 

The team at MDC is made up of Movement Disorders-trained neurologists, neuro-palliative neurologists, neuro-behavioral neurologists, neuro-ophthalmologists, neurosurgeons, rehabilitative medicine specialists, speech language therapists, physical therapists, occupational therapists, neuro-psychiatrists, and many others, including the invaluable Parkinson disease organizations throughout our community. This team has a deep understanding of all aspects of Parkinson disease and its therapies. 

“We learned so much about our own program going through the rigorous process to receive designation as a Parkinson’s Foundation Center of Excellence,” said Dr. Seeberger.

 

Receiving this designation is an incredible honor and we look forward to deepening our relationships with those in our PD community. In doing so, we also look forward to elevating standards of care for people with PD and those who care for them. 

“The team at the University of Colorado is thrilled to be part of a larger network of high-performing sites that allow us to share what we do well and create opportunities to raise the bar by incorporating successful programs from other sites,” said Dr. Leehey.

Our Center is Here to Help

In 2018, the Movement Disorders Center served 3,281 people with Parkinsonism, conducted 39 PD studies involving nearly 300 patients, and delivered 78 talks to professionals and the community. 

The MDC offers a Newly Diagnosed Educational Visit shortly after diagnosis. During this visit, patients are given one-on-one education on the diagnosis and treatment options for Parkinson disease. This time is dedicated to answering all questions and providing extra support and encouragement. 

The full press release can be read on the Parkinson’s Foundation website.