Moving Forward

Post written by Dr. Serena Hung

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Research projects currently at the Medical College of Wisconsin and what may be on the horizon.

Even though the majority of the patients who come to see the movement disorders specialists are patients with Parkinson’s disease, we do have patients with various other disorders in our clinic. We have been fortunate to be able to offer clinical trials to patients for reasons I mentioned in an earlier blog.

Here are some of the ongoing clinical trials within the Parkinson and Movement Disorders Program:

For patients with Parkinson’s disease

1. We are one of the sites for a new device made for deep brain stimulation. The target in the brain is the same as the target we normally use. However, the device is new and may or may not offer some benefit over the device currently on the market. That’s something we don’t know and part of the reason why we do clinical trials.
   
   
2. Another trial is ongoing for early Parkinson’s disease patients. Their disease severity has to be mild enough that they are not on any medications for Parkinson’s disease. This is using high dose coenzyme Q10 for possible delaying of disease progression (neuroprotection)
   
   
3. For patients with family members (parents, brothers, sisters) with Parkinson’s disease, there is a trial which require a one-time visit to explore the genetics of Parkinson’s disease

Tremor

We are performing a trial using deep brain stimulation in patients with essential tremor. The requirements are quite specific — patients have to have face, head, voice or trunk tremor in order to qualify for this trial. They can also have hand or leg tremors in addition to the midline tremors. The target we are using in this trial is novel and we would like to see if it works better than the existing target for tremors involving midline structures.

Huntington’s disease

We are not recruiting at this time, but we have been following a group of patients for 10 years in a trial called PHAROS. We have gained some insight into the progression of this illness in the days prior to people starting to have symptoms and thanks to our patients who have been extraordinarily patient (10 years is a long time) and enthusiastic, we may be able to use this information to plan future clinical trials.

We are pursuing clinical trial opportunities for other trials in Parkinson’s disease and Huntington’s disease. One of the most important things for our group is that we can offer opportunities to participate in research studies to our patients and we are constantly on the lookout for things that may make an impact on understanding these diseases or treating them better. If you are ever interested in finding out about research opportunities, if you are one of our patients already, ask us when you come see us. We are always happy to tell you more. If you are not one of our patients currently but you are interested in participating in research, you don’t have to leave your current doctor to engage in research. All you have to do is call our research coordinator, Jo Bergholte, MS at 414-805-5210 and go from there. Frequently we can work with your doctor to ensure they understand what we are doing here and update them on any changes.

Post written by Dr. Karen Blindauer

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The "Moving Forward" bloggers at the symposium: Dr. Serena Hung, me (Dr. Blindauer) and Dr. Bradley Hiner

I have been asked by a number of people with Parkinson's diseare (PD) or their family members to write about our second annual Parkinson’s Symposium and touch on the highlights of the day. It is with great delight that I reflect on a very successful and informative educational event. More than 350 people were in attendance on a not-so-pleasant, rainy Saturday.

Dr. Safwan Jaradeh, chairman of Neurology at the Medical College of Wisconsin, and Christopher Sheridan, RN, PD program manager, kicked off the program with a warm welcome and introductions and an overview of the day's events.

Vicki Conte, coordinator for the Parkinson's and Movement Disorders program, was her usual encouraging self.

They keynote speaker was Dr. Walter Rocca, professor of Epidemiology and Neurology at the Mayo Clinic College of Medicine. Dr. Rocca’s talk was entitled “Environmental Risk Factors and Genetics of Parkinson’s Disease.” He gave a fantastic and very clear summary of what is known today about these issues in PD. He described risk factors for PD including advancing age, male gender, positive family history, prior severe head trauma, exposure to certain environmental toxins, and inheritance of certain genes. It was reassuring to learn that genetic forms of PD are rare and that having a positive family history of PD does not mean one is destined to develop PD.
 
The average person has a lifetime risk of developing PD of about 1 to 2 percent. With a positive family history, that risk goes up to about 4 percent, which is higher, but clearly still a small risk. Since the population is aging and everyone is living longer, the prevalence of PD will increase. This is an effect of the population having more older folks around and not a sign of a PD epidemic. He did point out that there are many different causes for PD in each individual patient and many more causes in the population at large. That is why it has been so difficult to find the cause of PD in order to find a cure. He noted there is no definite proof of any vitamins or medications preventing PD, but that exercise has been shown to be beneficial in PD. There may be some reduced risk of PD in smokers and coffee drinkers, but the cause and effect relationship here is not clear. He therefore recommended that if someone does smoke they should stop because of all the negative health effects, and that someone should not start smoking because they have PD.

The next speaker was Dr. Mark Rusch, psychologist for the Parkinson’s and Movement Disorders Program at Froedtert & The Medical College of Wisconsin. He gave a very clear and comprehensive review of cognitive and emotional changes in PD. He discussed depression, anxiety, apathy, fatigue, sleep disorders, and cognitive impairment including problems such as dementia. He reviewed how these conditions manifest in PD and how these conditions can be treated. It is very helpful for all to learn that PD goes beyond the tremor and movement disorder. Addressing these non-motor symptoms improves the overall well-being and quality of life for people with PD.

After these in-depth and informative lectures, we were treated with an entertaining introduction to the Parkinson’s Disease Dance Project. Dance instructors Tom Thoreson and Susanne Carter led their class of students in a fun and energizing dance to the music “Singing in the Rain.” The students are people with PD who are improving their mobility, flexibility, and balance through dance. It was clear that they were having a lot of fun while working hard. I was able to join in as an audience participant, and have to say, dance is a fun way to exercise.

Susanne Carter leads the group in movement and stretching exercises.

After the lunch break we reconvened with an excellent overview of the rehab resources that are available at Froedtert & The Medical College. Physical therapist Jessica Doine, occupational therapist Bill Reinhard, and speech therapist Laurie Dulitz all clearly defined the role of therapies in improving function, safety, and quality of life in PD. They reviewed the goals in therapy for early and later stages of PD and taught us about the Move BIG and Think LOUD strategies to improve mobility and communication. We are truly grateful to have such talented and enthusiastic therapists on our comprehensive PD team.

We had the opportunity to meet our registered dietician, Sarah Zangerle, who explained dietary needs specific to people with PD.

Our patients with PD also have the benefit of complimentary services in the community to continue on with improving the balance, strength, mobility, and voice after the therapies have been completed. Bonnie Jean Barczak, music therapy director at the Wisconsin Conservatory of Music, reviewed the merits of exercising the voice through song to improve volume and articulation in PD. Pat Culotti, Tai Chi instructor, reviewed the role of her program in helping people with PD. She demonstrated a few basic exercise moves, with audience participation. The stretching and movement really felt good. JT Mathwig, PT, discussed the benefits of PD Treadmill Exercise Class, which has been getting great reviews from our patient population. Dee Schwaiger gave additional information about the PD Dance Project, which is rapidly growing in attendance.

Last but not least, my team, the Parkinson’s and Movement Disorders neurologists, gave presentations on a smorgasbord of PD topics in just over an hour. What a feat!

Dr. Serena Hung discussed some of the hottest topics in PD research and reviewed how to find good information on the Web.
 
Dr. Hiner gave a good review of the Braak staging system in PD that shows how changes occur in the nervous system outside the dopamine pathways. This explains why some of the non-motor symptoms like constipation, sleep problems, anxiety, depression and cognitive impairment occur in PD. He then reviewed the recent scientific publication showing the superior benefits of DBS over the best medication adjustments in the treatment of PD symptoms. He also shared a video from a patient who had successfully undergone the DBS, showing the dramatic change in his PD symptom control from before to after the procedure.

I reviewed the changing philosophy in the field of neurology on when to start medication in early PD, what medication to start first, and the pros and cons of these options. I also discussed the “levodopa phobia” phenomenon and how it can negatively impact patients who are afraid to take levodopa when they need it.

All in all it was a great day. The speakers were excellent, the information presented was outstanding, the audience participation and questions were delightful and insightful. I felt energized and excited about my mission to help people with PD and their families. As we all departed, the sun broke through the clouds in a sort of symbolic way, indicating the day had been successful, enlightening and uplifting.


Symposium participants get involved .

Post written by Dr. Karen Blindauer

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Sometimes we hear about patients leaving an office visit and saying they didn’t really understand or remember everything that was discussed at the visit or they didn’t get their questions answered. That to me sounds like an unproductive doctor visit.
 
It can be helpful to have a family member come along to the visit to have another set of ears hearing the information. I also like to type up and print out an explanation of medication changes we are making, the reason behind it, the expected benefits, and possible side effects. I strongly believe that patients do better when they are well-informed. Fortunately at the Froedtert & The Medical College of Wisconsin Parkinson's and Movement Disorders Program clinic, we have many other resources for patient education to supplement the information given at the doctor visit. We have brochures and handouts, educational lectures, informative Web sites, productive and educational support groups, and a fantastic patient and education coordinator named Vicki Conte.

I like to give information and have my patients well-informed. On the flip side, however, I need good information from my patients in order to take better care of them. Sometimes a patient asks, “How Do You Think I’m Doing?” I may not have seen you for three to six months, or maybe even a year. It always helps for you to tell me how you think you are doing. The clinic visit is just a snapshot of how you are functioning. I may be seeing you on a good day or a bad day. It is very important for me to learn how you are doing on an ongoing basis during the times I am not seeing you.
 
Your friends and family may have a different perception of how things are going. Their input can be very important too, whether it is the same or different from yours.

I, of course, will have many questions for you. Asking about mobility, walking, falls, dizziness, coordination, mood, sleep, memory and thinking, bowel and bladder function are all part of a thorough assessment of your Parkinson’s disease. And then there is the good old UPDRS (Unified Parkinson’s Disease Rating Scale). Patients say, “every time I come, the doctor has me tap my fingers and feet and walk down the hall.” As repetitious as it may seem, the UPDRS is one tool I use to be able to answer the question, “how do you think I’m doing?” I can assess your tremor, your rigidity, your slowness of movement — even your balance — using the UPDRS. I come up with a score that is an objective measure to compare from visit to visit.

Some patients may fluctuate during the day and have good times and bad times. We call these motor fluctuations. A good part of the time, these changes relate to the Parkinson medications kicking in and wearing off between doses. Knowing approximately, or more precisely, when these fluctuations occur during a day can help me to better adjust your PD meds to get the smoothest and best symptom control throughout the whole day. I sometimes will ask my patient to keep a symptom diary or journal for a few days, where they would record when they take their meds, when they kick in, when they wear off, when and what they ate, when they had good function or bad function, or when they had dyskinesias. I don’t want to encourage all — or even most — of my patients to become too analytical about the hour-to-hour description of their days and nights. Focusing too much on the symptoms can be distracting or detract from your usual activities. However, for a “fluctuator” this information can be incredibly valuable at the doctor visit.

Some patients may have dyskinesias which are wiggly movements that are a side effect of Parkinson medications at their peak level and different than the more rhythmic tremor that occurs when the medications wear off. A patient may call and say “I am shaking all over all the time”, and they may be having tremors or they may be having dyskinesias. I or my nurse will dig into this further to figure out which of the two problems it might be. A problematic tremor might need a med increase; troublesome dyskinesias may need a med reduction. So, you can see how good or detailed information makes a difference.

You may have a lot of questions or concerns, but when on the spot, your mind goes blank. That is where a list of questions comes in handy. The “list of questions” is something you can create between visits. Keep it on the fridge or the night stand. When a question pops into your head that isn’t urgent, jot it down. Prioritize the list along with your spouse, child, friend, so that you have one to three “chief complaints” or pressing questions to start off with. The list will help to keep us both on track. While we try to get to all your concerns, time may run out before covering everything.
 
A current list of your medications including the dosage is crucial. Sometimes other doctors prescribe things that may interfere with your Parkinson’s disease itself or with your Parkinson’s medication. (Please see our “To Your Health” bulletin that lists contraindicated drugs.) I really need an accurate list of all of your medications.

The visit will conclude with my reiterating my assessment of your neurological health and how I think you are doing. I will discuss any medication changes we might be making, and the pros and cons of that. When you check out in our clinic, you will be given a listing that includes those med changes. You will also have my typed instructions with more details to help you remember. I may have you call to check in with my nurse on how you are doing with the medication change. I may make other recommendations such as starting an exercise program or attending a support group. Vicki Conte, our Parkinson’s and Movement Disorders Program Coordinator is here to assist in getting you plugged into a variety of community options. It may be months until your next clinic visit, but you should never feel that our team isn’t available to you between visits.