Nothing great is ever achieved without enthusiasm

The NW Noggin team briefed members of the Senate HELP committee on their research and outreach efforts in the Pacific Northwest.

The NW Noggin team briefed members of the Senate HELP committee on their research and outreach efforts in the Pacific Northwest.

NW Noggin, the brain-child of Bill Griesar and Jeff Leake, is an arts-and-science integrated outreach program that targets underserved communities in the Portland-metropolitan area.

Teams of artists and scientists from universities all over the Portland/Vancouver area collaborate to create art-based science projects that illustrate complex concepts in ways that non-experts can understand.

Recently, NW Noggin was invited to travel to DC to participate in “Briefing with Brains,” a week-long series of events aimed to inform members of congress about the outstanding research and outreach efforts being made in the Pacific Northwest. While in DC we were fortunate to present our work to members of the Congressional STEAM Caucus, co-chaired by Oregon’s own Congresswoman Suzanne Bonamici, as well as members of the U.S. Senate HELP Committee.

The Phillips Collection, a contemporary art gallery in Washingon, DC, also partnered with NW Noggin to host “Neuroscience Night” where interactive science stations were interspersed with artwork.

Chief among these was the work of Portland based artist Kindra Crick, granddaughter of Nobel prize winning scientist Francis Crick.

Perhaps the most important, and certainly most exciting meeting we had was with a bunch of elementary school kids who couldn’t have been more excited to learn about the brain.

Honestly, I’ll never get tired of being asked, “Is that a REAL BRAIN!?” because when you say yes, you wouldn’t believe how blown away a third grader is.

Graduate school can be a long and arduous journey, and even the most resilient among us can, over time, become a little cynical.

school outreach

Getting psyched for brains! NW Noggin getting ready for some amped-up future scientists at Turner Elementary.

But when kids look at you like you’re a veritable superhero for being a scientist that cynicism is replaced with a really gratifying sense of pride, and you realize that outreach really is a two-way street.

If you don’t know that neuroscience exists, you can’t decide to study it when you grow up.

Making sure that kids, regardless of their socioeconomic status, believe that a career in science is accessible to them is not only a critical endeavor, but is also the true responsibility of members of the scientific community.

By engaging kids at a young age we ensure that their awareness of their brain and brain health begins early; we plant seeds of curiosity that are nurtured over time.

NW Noggin also gives young scientists the opportunity to practice discussing their research in a way that is readily understandable to the general public.

Our research does not exist in a vacuum, and it’s really only when our findings reach the communities we hope to help that they do anyone any good. It’s for this reason that I believe that in addition to cultivating the next generation of scientists, it is our responsibility to disseminate our research in a meaningful way.

Through the effort of NW Noggin and outreach groups like it, I hope that we can continue to promote policies that support STEM education through federally funded programs.

We need to keep kids excited about science, because, like Bill always says, nothing great is ever achieved without enthusiasm.




Christie Pizzimenti  is a graduate student and Ph.D. candidate in the Department for Behavioral Neuroscience.

Two ears are not always better than one

My team of researchers has discovered that as many as one in two individuals with hearing loss experience abnormal fusion, or a blending of dissimilar sounds, when wearing either bilateral hearing aids or a cochlear implant with a hearing aid.

This “averaging” of sounds worsens their ability to hear others’ speech.

Typically, two hearing devices, when possible, are better than one. But some individuals with bilateral hearing loss hear speech better when using a hearing aid or cochlear implant in only one ear.Doctor Fitting Female Patient With Hearing Aid

For more than a half-century, hearing scientists and audiologists have been puzzled as to why.

This study, published in the Journal of the Association for Research in Otolaryngology illuminates the cause of the abnormal processing that results in this phenomenon.

This understanding will enable scientists to develop ways to improve patients’ ability to hear.

Typical-hearing listeners only fuse similar sounds between the ears.  We found that many hearing-impaired listeners fuse sounds less discriminately, fusing those that are both similar and different between ears, such as a low-frequency sound, a man’s voice or low tone on the piano, for example, in one ear with a high frequency sound, like a woman’s voice or high tone, in the other ear.

This would be like fusing the image of your thumb in your left eye with the image of your pinky in the right eye into a single finger.

The fusion also leads to averaging and distortion of the different sounds between the ears, similar to averaging of color between the eyes with the old-style red and blue 3-D glasses used at the movies.  For many hearing-impaired individuals, this fusion only distorts a few speech sounds.  However, for other individuals, fusion distorts the majority of speech sounds, and listening with two ears is so difficult that they choose not to use a second hearing device.

Our study also sheds light on why hearing-impaired listeners have difficulty understanding speech in background noise, and how abnormal fusion may contribute to this. If different voices are fused together, it is more difficult to attend to a particular person in a crowded room.

In the future, scientists hope to be able to offer patients with hearing loss brain retraining programs to help correct this abnormal brain processing.




Lina Reiss, Ph.D., assistant professor of otolaryngology in the OHSU School of Medicine, is the lead author of this paper titled, “Two ears are not always better than one: Mandatory vowel fusion across spectrally mismatched ears in hearing-impaired listeners.”



This research was supported by grants R01 DC013307, P30 DC010755, and P30 DC005983 from the National Institutes of Deafness and Communication Disorders, National Institutes of Health. [The laboratory cochlear implant Freedom processor was provided by Cochlear and the laboratory hearing aid was provided by Oticon.]

FAQs on deep brain stimulation: What is it? What does OHSU offer?

If you or a loved one has Parkinson’s disease or essential tremor, you may have heard of deep brain stimulation. But what is it? How does it help? And how is it done here at OHSU?

Here are 10 of the most frequently asked questions that can help you learn more.

We’ve also recently launched a new deep brain stimulation website with details on the procedure and which patients make good candidates.

1. What is deep brain stimulation?

Deep brain stimulation, commonly referred to as DBS, is a surgical treatment for patients with Parkinson’s disease, essential tremor and other disorders. It works like a pacemaker for the brain. Tiny electrodes, or leads, are placed in one or two parts of the brain that control movement. They’re connected by thin wires to a small device implanted just under the skin, usually in the chest.

The device, often called a stimulator, sends low-voltage electrical pulses to the leads, helping the brain control movement.

Colin Halstead of Eugene works as a counselor at a church. Since having DBS surgery at OHSU, he no longer worries about having to go on disability.

Colin Halstead of Eugene works as a counselor at a church. Since having DBS surgery at OHSU, he no longer worries about having to go on disability.

2. Why do people get DBS?

Many patients with Parkinson’s or essential tremor report a dramatic improvement in quality of life.

Patients often need far less medication to control symptoms. They can regain the ability to perform everyday tasks, such as eating and dressing on their own.

Colin Halstead of Eugene, for example, walked with two canes and took 27 pills a day before his DBS surgery at OHSU. His employer thought he needed to go on disability. Now Halstead can walk without a cane and takes one pill a day.

“I would do this again in a heartbeat,” said Halstead, who has Parkinson’s disease. His boss told him: “I would not know you have this disease anymore, from what I can see, unless you tell me.”

3. Is DBS a cure?

No. DBS won’t cure Parkinson’s or essential tremor, and it won’t slow the progression of either disease. The stimulator settings can be adjusted, however, to better control symptoms as changes occur.

4. How is DBS done?

DBS involves two surgeries. Here at OHSU, both are done with the patient under general anesthesia.

In the first surgery, OHSU neurosurgeon Kim Burchiel, M.D., makes one or two incisions in the skull, each smaller than a dime. He uses MRI and CT scans taken before and during surgery to place the leads in the exact spots of the brain.

A study at OHSU showed the technique is exceptionally precise. Most patients spend one night at OHSU Hospital and go home the next day.

In the second surgery, two to seven days later, the stimulator is placed in the chest. The device is about the size of a tea bag. It goes under the skin, usually below the collarbone. The patient goes home that day.

About a week later, the stimulator is programmed using a small device called a programmer. Many patients need several sessions to achieve the best symptom control. After that, the stimulator is typically adjusted every six months. The battery is replaced every three to five years in a minor outpatient procedure.

5. Does DBS help every Parkinson’s or essential tremor patient?

No. In some cases, DBS can make symptoms worse. We thoroughly screen patients to make sure they have a high likelihood of significant benefit. Those who aren’t good DBS candidates are offered other treatments.

6. Are there risks?

Yes. DBS involves surgery, and all surgery carries some risk. With DBS, risks include possible stroke or speech problems.

Risks, however, are generally low. A recent three-year analysis of U.S. academic medical centers, including OHSU, found that among 2,038 patients who had DBS, seventy-two had complications, and one died. Among the 219 patients who had DBS at OHSU, none died and one had complications.

7. How does DBS work?

Colin Halstead, a DBS patient who has Parkinson's disease, is back working in his woodshop.

Colin Halstead, a DBS patient who has Parkinson’s disease, is back working in his woodshop.

Researchers think the electrical pulses change the abnormal signals in the brain that cause tremor and other symptoms.

8. How does DBS differ from other treatments?

Unlike some other surgeries for Parkinson’s or essential tremor, DBS does not destroy brain tissue. That makes it reversible. If something better comes along, DBS can be turned off or removed.

9. How long does DBS last?

Studies show improvements last years. A study published in JAMA Neurology in 2011 found that Parkinson’s patients were seeing significant improvement 10 years after surgery.

In a 2012 study published in Stereotactic and Functional Neurosurgery, essential tremor patients reported significant benefits – whether they had DBS surgery one year before or four years before.

10. What does OHSU offer?

Burchiel, our DBS surgeon, has done DBS more than 1,000 times. He also introduced asleep DBS in 2011, relieving patients of the fear of being awake during brain surgery.

Patients also receive care from our nationally recognized movement disorders program, with experts in physical therapy, speech therapy, psychology and other areas.

In addition, we can treat DBS patients from outside the Portland area. A secure video link enables patients to complete many  appointments from their own communities.

YouTube Preview Image

Learn more on OHSU’s DBS website. You’ll find a longer video about Colin Halstead, checklists to see whether you or a relative could be a candidate, and more about the benefits and risks.

Eleven-year-old inspired by her mom to find a cure for multiple sclerosis

image_8It has been important to me to raise money for the MS Walk for the past 8 years because my Mom, Carol, has been diagnosed for 21 years and I have only known her living with MS and its challenges.

At the age of 3, I was able to join her at an MS conference in Boston and it was then that I saw how MS affects thousands of people in thousands of different ways.

I knew that I needed to do my part in making a difference.

That is when I decided to fundraise on my own for the walk.

My parents walked with me through our neighborhood as I went up to the door of each house by myself and told the neighbors what I was collecting money for and why.

I was amazed how it seemed many knew someone who had the disease.  I successfully raised $1,500 that first year. Each year, my walk total has increased. In 2015, I raised $10,300 and was #5 top fundraiser for all Oregon walks.

This year, I have beat that total with $10,430 so far. I have until May 31 to try to get more.

It is my hope that people who live with MS will not only have a life as normal as possible, but that there will be a CURE and that in the future, others won’t have to hear the words, “You have MS” anymore! 

IMG_20160423_081403Over the years, I have been able to see my fundraising dollars being used productively as new MS drugs have been developed giving people more options for treatment.

I know it is because of treatment and great care by a MS specialist that my mom is able to live a good life.

Her specialist, Dr. Ruth Whitham, has given her that opportunity. Dr. Whitham is a huge part of “my family” and I will always be grateful for her. Because of her great care for my mom, I was able to exist.

Due to my fundraising accomplishments last year, I was privileged to attend the National Multiple Sclerosis Society’s Leadership Conference.

I learned so much there and it inspired me to work even harder for this cause.

My mom is no different than any other person’s mom, she just has a disease and I want to do all I can to help find the cure.

Claire’s mother shares her story of living with MS, and finding love and inspiration here.

Living and loving with multiple sclerosis

Carol Sarnowski, our guest blogger, patient and MS advocate, was diagnosed with multiple sclerosis 21 years ago. Here is her story.


My MS diagnosis came as a complete surprise.

I had finished nursing school and was at the prime of my life when the migraine headache I had been fighting for months to treat got more intense and I woke up completely numb on my left side one morning.

I went to my long time family doctor, JohnFB_IMG_1454974696594ny Bill Delashaw, Sr., in Longview, Wash., who was also a long time family friend. Of course, with my nursing knowledge, I was convinced I had a brain tumor and insisted on having a MRI.

Dr. Delashaw told me not to self diagnose, but ordered the MRI even though he disagreed with my self-diagnosis.

I had the MRI on Friday and on Monday, his office called telling me he wanted to see me. I went in and he explained he took my MRI films down to his son, Johnny Bill, Jr., a neurosurgeon at OHSU.

I was then referred to the OHSU Multiple Sclerosis Center, where my diagnosis was confirmed after a spinal MRI and a lumbar puncture.

This diagnosis was a surprise to me, my family, my friends and my doctor.

My migraines lasted 121 days and didn’t improve until weeks after an intense course of IV steroid therapy. I then started the only drug on the market for MS, Betaseron. I was very sick and thought my life and dreams were over.

Being single, I wasn’t sure if I would ever find a person who would want to marry me or if I would be able to have a family. I decided that I couldn’t help it — I had MS and I wasn’t going to let it hold me back from my dreams. I just knew I had to be open about my diagnosis and educate others the best I could.

I began dating Ken, my husband, in January 2000. I remember telling him about my MS on our first date and giving him the opportunity to bow out. He didn’t let the MS scare him away even though he had a friend who was pretty debilitated by MS.

I explained to him I had the best MS doctor —Dr. Ruth Whitham at OHSU— who had me on the newest MS drug at that time, Avonex.

We continued dating and were married in June of 2003.

Thanks to Dr. Whitham’s great care and knowledge, my MS stabilized. In October, 2003, she gave us the OK to try to get pregnant. She thought it could take awhile and instructed me on how to go off of my MS drug and try to conceive.

By December, I found out I was pregnant. It was a shock to all of us as it happened so soon. My pregnancy went great, even though I was off of my MS medication, and I delivered a healthy baby girl, Claire.

I have never hidden my MS from Claire. She went to appointments with me, saw me do my injections, accompanied me to MS meetings for the Patient Advisory Board I served on for Biogen, and participated in yearly MS Walks as I pushed her in her stroller.

I believe being open about my MS in all aspects of my life has helped me cope and succeed at living my life as close to normal as possible.

Claire’s early exposure to MS has made her my biggest advocate and my best medicine.

Claire is a Top Fundraiser for the National MS Society’s Portland MS Walk. I know I wouldn’t have the life I have today — or even my daughter — had it not been for the wonderful care I had from Dr. Whitham and OHSU.

I am forever grateful. After 21 years, Dr. Whitham is just not my doctor, she is also my friend.

Want to learn more from 11-year-old Claire? Read her side of the story here.

Help us understand how to better design health technologies

Currently, there are many claims and promises of how electronic medical records, fitness bands, smartphone apps, telemedicine and many related technologies will become mainstay components of healthcare.

Yet despite this promise, there is a dramatic lack of knowledge of how such innovations are or may be used among the diverse members of our community.

Most importantly, we don’t know when, where, or even whether they may work.older-woman-online

Please consider joining us as a research volunteer in a new landmark project of our center called RITE.

RITE is Research via Internet Technology and Experience.

The RITE project seeks to transform the way we inform clinical research by providing real-world, timely health and related life experience data from thousands of people such as you.

As a participant in RITE, you will provide medical and related information solely over the internet during brief, usually five minutes or less, online surveys delivered to you on your personal computer, tablet or phone.

Unlike typical clinical research, where you travel to a clinic or doctor’s office, you will be informing research directly from your home, on a much more regular, real time basis.

By being a member of the diverse RITE community, whether you are young or old, a person with multiple chronic medical conditions, a person trying to remain healthy, or someone needing to support a loved one who is ill, all of you are needed.

You will all greatly contribute to our understanding of how this rapidly evolving, potentially transformative area of health care is working.

In joining the RITE community, you’ll contribute critical data that will create the first ever long-term picture of key health and well-being in everyday life.

I hope you will agree with me that the time is right to join this effort, and I thank you in advance for your willingness to help.

Please click here to find information and the consent form necessary to officially enroll.




Dr. Jeffrey Kaye is the Director of ORCATECH – the Oregon Center for Aging & Technology, a research center at the Oregon Health and Science University, supported by the National Institute on Aging.

Is there a connection between stress and Parkinson’s disease?

Most neurology text books will state that stress seems to exacerbate Parkinson’s disease symptoms and persons with Parkinson’s disease often describe the worsening of their tremor when having to speak publicly or the worsening of dyskinesias while watching a suspenseful movie scene.

Close-up of old man's eyeIn spite of this observation there has not been a lot of research really examining the interplay of stress and the development or exacerbation of Parkinson’s.

We know that stress can have effects on the brain and in animals studies it has been shown to contribute to atrophy and reduced function of the nerves in the brain.

Stress reduction has been shown to be beneficial in multiple medical conditions – reducing blood pressure in persons with hypertension, skin lesions in persons with psoriasis, and blood sugars in persons with diabetes.

There was a recent study in multiple sclerosis that showed fewer new brain lesions when persons participated in an intensive stress reduction program.

It is not clear what role stress plays in Parkinson’s disease but Dr. Hiller’s goal is to gain more knowledge in this area by researching cortisol levels in persons with Parkinson’s disease with and without significant stress and eventually hopes to examine the effects of stress reduction on the psychological and physical functioning of persons with Parkinson’s disease.




Amie Hiller, M.D. is an Assistant Professor of Neurology at the 
OHSU Parkinson Center.

Bionic handball: A daughter’s take on deep brain stimulation

BaskingInSun_640In 2013, Dennis and his family traveled from Missoula to Portland so he could undergo Deep Brain Stimulation surgery for his Parkinson’s disease.

We’ve shared Dennis’ Parkinson’s story and the perspective from his wife Mary Ellen, as the primary caregiver.

Now, their daughter Daphne gives us a peek at what it was like for their family the night before surgery.

Tuesday, August 6, 2013

Bionic Handball

When you or a loved one is suffering from a disease, every cure or beneficial procedure seems to be put into a context of percentages. This becomes particularly true when dealing with surgery. Right now, I am hanging on to 1 in 1000.

1 in 1000 is the chance of something going seriously wrong during tomorrow’s surgery. Pretty nice odds when the lifetime chances of getting seriously hurt in a motor vehicle accident are 1 in 266. Really, getting through Portland traffic to get to the hospital may be more statistically dangerous than having deep brain stimulation! (Other interesting percentages: getting hit by an asteroid is 1 in 500,000, getting cancer is 1 in 7.)

Tomorrow morning Den will go in to surgery, the second DBS patient of the morning. When I asked the doctor, “What about alcohol after surgery?”, he replied, “You want recommendations? Oregon has some nice Pinot.”  It was established that Den can have a nice glass of celebration wine when he gets out of ICU.

Den will leave ICU with two U shaped transmitters in his forehead. About 10 days later he will go back into surgery to implant the power pack into his chest. It will then be programmed and turned on mid-September. So, tomorrow is the first part of a month long journey to finding some relief from Parkinson’s: in short,  we won’t know if the surgery worked for him until the device is programmed and turned on about a month from now.

In the time between tomorrow’s surgery and the chest implant, Den will have to rest his brain. He was told not to think too much and to take life very easy:  his brain needs to rest and heal. All questions about economics or geographical trivia will have to be answered upon his return to Missoula. I thought he could watch the E! Entertainment channel as much as possible, particularly any reality show with Kardashian in the title. Mom and he will, instead, head for the coast for the recovery period where he can be by the sea, which is probably a better idea.

Tomorrow feels hopeful. His doctor is one of the best and so is this health center. Den  is having such a hard time with Parkinson’s that we feel grateful we have this procedure as a possible chance to resume a more normal life. Den spent a fair amount of time with the doctor today asking if the wire from his chest to his brain could be longer so he could have full motion during handball. It can’t, which could provide a good excuse if he loses a handball game after recovery. As Den showed the doctor the full motion he needed for handball, I felt a surge of happiness: it has been a long time since he has talked about playing his favorite sport.

Thank you all for your encouragement, support, and hope.

2016 update from Daphne:

I clearly remember this time in our lives: the night before the surgery, our family (my parents, four kids and husband) went out to a chic, bustling restaurant in Portland. We laughed and talked about everything but the surgery — just gave a lot of “thankfuls” for having each other and life as it was so far.

The feeling before such a major surgery is surreal: dream-like, almost, in its intensity and its possibility.  After the surgery, we were relieved everything went well and felt quite hopeful about Den having some relief from Parkinson’s symptoms.

While it was not a cure-all for him, life after the surgery has certainly been better for him than before it, and I do believe it has given him more years to participate in activities he enjoys. Since his Parkinson’s diagnosis almost 15 years ago, Den has fought to define the role of Parkinson’s in his life and not have it define him: I think the surgery has given him more years to feel he is in control of the disease.

For this, and for his daily presence of support, love, and good humor, I am forever grateful.   

Headers in soccer are a leading cause of concussion

11-year old blond girl playing with a  soccer ballAmerican Football may still be the leading concussion injury for all sports in the US, but soccer caused the second highest number of concussions in high school sports.

Soccer is also the number one cause of concussions for girls in high school sports.

Furthermore, women soccer players sustain about 1.7 times more concussions than male soccer players.

The cause of this is unknown, but may be related to the aggressive style of play in women’s soccer, resulting in more body and ground contact.

Overall, injury statistics tell us that 30% of all soccer-related concussions are from attempting to head the ball.

This is actually not because of the ball hitting the head, but rather the opponent’s head or body hitting the player’s head.

74.2% of boys’ concussions are from heading the ball.  It also causes 58.1% of girls’ concussions, plus a higher percentage in women due to player to ground contact.

Nevertheless, 40% of all concussions in soccer are due to arm or elbow to head contact and 60% of all heading related injuries are concussions.

Limiting the number of headers and or the contact associated with headers by enforcing current rules or making rule modifications may make a significant impact on the concussion rate.

Soccer is a great sport and our goal is to do anything we can to make it safer so we can encourage future participation.

Marar M. McIlvain N. Fields S. and Comstock R. Epidemiology of Concussions Among United States High School Athletes in 20 Sports. Am J Sports Med. January 2012.

Jim Chesnutt


Jim Chesnutt, M.D. is the director of the OHSU concussion program, serves as Co-Director of the Oregon Concussion Awareness and Management Program, Medical Advisor to the Oregon School Activities Association (OSAA), and is a member of the Governor’s Task Force on Traumatic Brain Injury.

Living with a husband who has Parkinson’s disease

Dennis was diagnosed with Parkinson’s 15 years ago and underwent Deep Brain Stimulation at OHSU in 2013. Last week, we heard his story, from the patient perspective. Here, his wife Mary Ellen provides a look into the caregiver’s frame of mind.

Originally published on Summit For Parkinson’s, a group of Montanans giving back to the Parkinson’s community.

Screen Shot 2016-03-25 at 10.01.20 AMThe caregiver’s perspective

“How’s Dennis?” That is the typical question of friends and acquaintances wanting to show they care about the health of my husband. “Up and down,” I usually reply. But I am really thinking, “I wish I knew.”

It’s difficult to know how anyone is who has Parkinson’s. The days are not predictable. My husband and I  have lived with his Parkinson’s for ten years. He has what the experts term, “idiopathic Parkinson’s,” which, translated, appears to mean “Dennis appears to have Parkinson’s, but it’s just not typical.”

So given that Dennis has “idiopathic Parkinson’s,” I don’t know if what I am experiencing with his Parkinson’s is typical or not. That said, I do believe caregivers share a great deal in common no matter what the formal diagnosis of the partner may be.

Living with a Husband Who Has Parkinson’s

For the most part, living with Parkinson’s is like having a third person with you at all times. Imagine having someone with you who takes control randomly and changes his mind at will.  It’s stressful. The major issue I have found living with Parkinson’s is its unpredictability.

In terms of our lives, I am most challenged by my inability to plan.  I never know how Parkinson’s will impact my husband. Dennis can be doing something fairly normal, such as having dinner or watching television. Then, suddenly, he can’t walk. Sometimes his is even frozen in place. He can be ready to go to a football game one minute and unable to get out of the car the next. He can enter a party with enthusiasm looking energetic and lively and find that he has to leave the festivities a half hour later hardly able to navigate out the door. Our lives have become a “best guess” scenario in terms of how Dennis’ body will perform at any given time.

This unpredictability is often misunderstood by people who don’t know Parkinson’s symptoms or appreciate the complexity of the disease. I understand their confusion and sometimes disbelief. It is difficult to accept that a person with Parkinson’s who looks healthy enough one when he entered the room lacks the control to “buck-up,” “push through” or “hold on a minute.”

What Parkinson’s has Taught me

COMMUNICATION IS ESSENTIAL: In spite of the issues that often make living with Parkinson’s a nightmare for Dennis and for me, he and I daily talk about his feelings and mine. Because of this, we constantly make a point of communicating straight up. We don’t hide our feelings and opinions from each other. I don’t tell other people about what it’s like living with the disease that I don’t tell him directly. He doesn’t try to cover up his disappointment in what he can and can’t do. Because we communicate, we are able to laugh a lot about things such as breaking glasses or slopping food or typing on a computer. Laughter helps us both deal with frustration and anger and fear.

Styling at the Glastonbury Opera U.K. 2010.

Styling at the Glastonbury Opera U.K. 2010.

FLEXIBILITY IS A GIVEN: There is nothing that a person has planned that can’t be postponed or changed. Nothing.

PATIENCE IS MANDATORY: It’s a lot easier for a healthy person to do things for a person with physical challenges than to wait while they do it for themselves. I am healthy. I could play the role of superwoman. I don’t. I encourage Dennis do as much as he can for himself. If it takes him three hours to sweep the walk, so be it. If he needs salt, he gets up and gets it. Dennis has always taken pride in contributing to the well-being of our household. He deserves to participate. It is my belief that if I take over all the responsibilities for running our lives, I will eventually make him weaker and more dependent. This is not a good situation for either of us.

So, our “deal” is that when he is in dire need or is completely and totally frustrated and he needs my help, he tells me. I would call on him if I were experiencing the same thing. Otherwise, he takes care of things himself at his own pace which is on his Parkinson’s clock.

I find that when we are with friends or even just out in public, people are often so concerned that they jump up to help him. Some strangers have even grabbed his arm on occasion. When I see Dennis is in need, I just tell myself, “I must have patience.” Dennis deserves the right to be in control of his situation. I don’t intervene unless he requests it, or after I’ve consulted with him first. I notice I have begun treating all people with disabilities more patiently than I ever had before we began living with Parkinson’s. Now, when I see someone struggling to do something, I don’t just insist on helping. I ask. I wait. I am patient. It’s hard.

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