Doctors, nurses and other specialists transform lives at the OHSU Brain Institute. Meet patients who found a precise diagnosis and relief, sometimes after years of searching.
By age 33, I had lost my faith in doctors. Then the OHSU Multiple Sclerosis Center and Dr. Dennis Bourdette changed my life.
I'm a mom, a wife and a country singer. My symptoms started around age 21 with crippling migraines. Doctors told me I just had to deal with those. I had pain, numbness, seizures and vision problems for years, and went to specialists and hospitals all over the country. On my 28th birthday, I went for an MRI and was diagnosed with multiple sclerosis.
I was on tour with my band at that point, doing 300 shows a year. I kept that pace because the record labels were looking at me. When they found out I had MS, they didn't want to sign me after all.
Multiple sclerosis is an invisible, complex disease that's difficult to understand. Five years later, I still hadn't found anyone who could help me manage it. I was frustrated and discouraged.
In 2007, I did a benefit concert for the Pre-Mo Charities fundraiser to support the OHSU MS Center. After the event, Dr. Dennis Bourdette called me. None of the specialists I'd seen would ever actually call up a patient, but he said, "Come see me next Wednesday."
Dr. Bourdette spent an hour with me and just talked, listening to all my symptoms. He was going on vacation the next week, and he read my medical chart on the plane there and back. He called in other specialists to fix things, like dental problems caused by my MS medications. The MS Center at OHSU is like the Mayo Clinic — they run like a well-oiled machine, and they find answers. They never send you out the door still scratching your head over what's wrong.
I feel so empowered by the MS Center and Dr. Bourdette. When I go there, they say, "Tell us what you need." They're the first doctors who have ever given me the controls. With them, I may have this disease, but the disease does not have me.
Whenever there's a breakthrough, Dr. Bourdette is on top of it. If I want to know whether a new medication will work for me, he knows the answer. I look forward to the day that MS medication comes in pills instead of shots — OHSU is pushing in that direction. They're the foremost in MS treatment, and we're very lucky to have them.
I have losses from my MS, but I'm doing well. I still perform because I want kids, families and other patients to see that someone with the disease can pursue her dreams. Dr. Bourdette sees me whenever I'm sick or need to deal with something. Everything my disease took from me, emotionally and mentally, the OHSU MS Center has given back.
Alzheimer's disease and dementia
For years, my husband, Glenn, had been behaving erratically. He became incapable of emotion and connection, and had lapses in reasoning. Or he would be reading an adventure novel and then start acting it out.
In 2010, during a physical, his primary care provider gave him a Mini-Mental State Examination (MMSE) to evaluate his behavior. After that, she sent him for an MRI. It showed he had marked dementia and generalized cerebral atrophy. Glenn was then evaluated by a neuropsychologist and, after more tests, was diagnosed with frontotemporal dementia. He was 57.
We were referred to Dr. Deniz Erten-Lyons at OHSU's Layton Aging & Alzheimer's Disease Center, where Glenn was enrolled in a clinical study for people with frontotemporal dementia. His experience is somewhat rare and genetic. His two brothers were also diagnosed with this condition and have since passed. Hopefully, this study will assist with answers for other families dealing with this heartbreaking disease.
After Glenn and I started going to OHSU, I found out about the support group for caregivers of people with frontotemporal dementia. Dr. Katherine Wild facilitates the group. She's absolutely amazing. The group meets once a month and offers camaraderie and comfort. There is opportunity to offer helpful ideas and advice.
Several people have attended for years, and we also often welcome new caregivers. Sometimes, even when someone loses their spouse or partner, they return to provide support to the rest of the group . There's a tremendous amount of courage in everyone's daily lives, and it is also inspiring to witness the strength of those who return to the group following the devastating loss of their loved ones.
I wouldn't say there's any formality to it. Dr. Wild reaches out to each member of the group, and everyone touches base on recent experiences. We share a commonality, but each with a unique experience. There are tears, but also laughing — you have to find the humor. We talk to each other, make suggestions, share what's worked, and what hasn't.
This has been an emotional roller coaster. In 2013, I placed Glenn in a residential facility. The safety issues became more than I could handle. It was the most difficult thing I have ever done. I got so much support from the group. When I felt guilt, they wrapped their collective arms around me.
Glenn is declining but at a slower rate than his brothers had. We go to OHSU to see Dr. Wild and Dr. Erten-Lyons about once a year. I always feel like all my concerns and questions are addressed.
Honestly, I only have positive things to say about OHSU. There is a great deal of neurological expertise, but it's laced with compassion as well.
Jennifer's husband was diagnosed with Alzheimer's disease in 2010. In 2016, as her husband's needs grew, Jennifer found help and support through an OHSU videoconference program. Each week for eight weeks, Jennifer was able to spend an hour talking with OHSU's Dr. Allison Lindauer. Together, they came up with strategies to handle behavior issues.
"When a loved one is diagnosed with dementia, you're left without a road map," Jennifer says. "Dr. Lindauer and I could brainstorm and develop approaches that made sense. Through the study, I had access to top-drawer, customized expertise every week." Read Jennifer's story.
Ed Parker is an eager study participant, taking part in four research projects at OHSU on cognition (thinking) and aging. One, the national Alzheimer's Disease Neuroimaging Initiative, involves taking brain scans to look for Alzheimer's.
He and his partner, Anne Clark, are also in a long-term "aging in place" study. Motion sensors and a special scale in their apartment send data to OHSU. Parker has also agreed to donate his brain to OHSU after he dies.
I had some familiarity with computers before I joined the Intelligent Systems for Assessing Aging Changes study three and a half years ago. I had two hand-me-down computers from my son, but these were out of date when I got the ISAAC computer.
The OHSU research center set up the computer equipment in my home. It used motion sensors and computers to track my activity and monitor my health. The ISAAC study is designed to collect information about normal aging and give researchers information about any changes over time. It also tests monitoring equipment that may someday be common in older people’s homes.
For the study, I filled out a weekly health questionnaire. I also met regularly with Colette Duncan from OHSU, who came to my home and tested my memory skills. I played computer games that were designed to support and test my brain health over time.
When my son encouraged me to document my memories of life as a child during the Great Depression, I took on the project with the help of my ISAAC computer. Over two years, I gathered pictures and stories from family members. The resulting history combines information from my mother’s writings, online genealogies and, of course, my own memories. Using the computer, I wrote and designed the final document. I only needed a little help with scanning pictures.
Being involved in OHSU’s research on aging helped me keep up with modern technology. It gave me access to the latest health information, and helped me stay involved with my family and community. Plus, just living daily life as an ISAAC participant helped me make a contribution to research that will benefit future generations.
In the winter of 2015, I started getting pain across my back and down my arms and legs. Over the next several months, it worsened. I wasn't sleeping. I was pacing every night.
Then I lost strength. I couldn't get out of my chair. I could barely use a walker. Pain pills didn't work. I had several visits to the local emergency room and hospital for multiple tests, and saw several specialists and doctors before ending up going to a neurologist.
Then my brother-in-law (a recently retired neurologist from OHSU) suggested I have my local neurologist refer me to the OHSU Brain Institute.
My doctor was very good and helpful; he really seemed to know what he was doing. He did all kinds of tests — a complete physical, nerve conductivity, spinal tap — which gave us a diagnosis: chronic inflammatory demyelinating polyneuropathy (CIDP).
My body's immune system was attacking the myelin, the covering protecting the nerves. It made me immediately feel better to know I had a diagnosis.
Once you know something's going on, you don't want to wait. I was admitted to OHSU, where I spent five days getting treatment that included steroids and IV immunoglobulin (IVIG) to help suppress my immune system. Everyone was great. I met new people every day, and one thing I also noticed was that they did a good job sharing information from one shift to the next.
I'll always have CIDP, but there is a large variation in how people recover. I was basically homebound before my diagnosis, and now I have strength to get up and down the steps. I only need a cane when I go outside. I've been very fortunate.
I had previously suffered from trigeminal neuralgia, which was like a lightning strike to the face any time something triggered it.
Dr. Kim Burchiel at the OHSU Brain Institute took care of the problem, surgically, both times that it flared up. I have also had chronic lymphocytic leukemia (CLL) for several years and was being watched by Dr. Andy Chen at the OHSU Knight Cancer Institute. (CLL has never presented any problems in the years since I was diagnosed.)
So I'd already had very positive experiences with OHSU when, in 2014, I started feeling weak in the lower part of my body. I had a hard time getting out of a chair or in and out of a car. Gradually, the weakness moved to the upper part of my body, also.
The neurologist that I had been referred to started me on in-home IV immunoglobulin (IVIG) treatments, but after the fourth session, I ended up in the hospital with extremely high blood pressure. After a week in the hospital and 10 weeks in a rehabilitation/physical therapy facility, I was finally able to return home.
I switched to a neurological specialist at OHSU for a second opinion and long-term treatment. He agreed with the original diagnosis of chronic inflammatory demyelinating polyneuropathy (CIDP), an autoimmune disease that attacks the myelin that covers nerve fibers.
He reinstated the intravenous immunoglobulin (IVIG) infusions, this time in a facility in Gresham. I continue to have the infusions every other week and take prednisone, gradually decreasing the dosage.
A year ago, I couldn't stand nor walk. With treatment, I have gradually gone from wheelchair to walker to cane to walking on my own. I continue to gain strength as I return to all my normal activities. Every morning I do 40 minutes of physical therapy exercises. I can now pick up and unload a 40-pound bag of pellets for my pellet stove!
This experience has been life-changing in many ways, and I am grateful to the doctors at OHSU for taking it from the scary place of uncertainty to the comforting place of possibilities.
In July 2016, I was having problems walking. My muscles were getting very weak. Although I was not in any pain, I was just getting weaker and weaker.
Everything came on so fast. I couldn't walk to get to my doctor's office. I had to go in a wheelchair. I couldn't brush my hair. I couldn't dress myself. I couldn't lift my arms to eat.
My doctor ordered blood tests, and they showed my creatine level was much higher than it was supposed to be. I stopped my medications, including cholesterol medicine. When I had my creatine retested a week later, it was lower — but still very, very high. My doctor thought it might be a neuromuscular condition.
I made an appointment with Dr. Nizar Chahin. My first impression was that he was very smart. His attitude was that we would get to the bottom of this and fix it. I felt like I was in good hands.
He immediately set up tests including a muscle biopsy, a CT scan, blood work, X-rays and a bone density test. I was diagnosed with necrotizing autoimmune myopathy, an acquired muscular disease. The cholesterol medication had caused an inflammation of my muscles.
We live almost five hours away, so he got me started with treatment that day. In fact, he and the team have always been good about setting up our appointments so we have enough time to make the journey to and from OHSU. I have regular IV immunoglobulin (IVIG) treatments at home now. Right now, I'm down to having them every other week.
Due to the muscle weakness in my legs, I could not get up and down my stairs. I spent two and half months in my bedroom. My goal was to be able to get down my stairs and help cook Thanksgiving dinner. That was the happiest day when I accomplished that goal.
In July, I gave up driving because my hands wouldn't work on the steering wheel, but by autumn I was able to drive my car again.
Last time I saw Dr. Chahin, he said I was about 95% back to normal. We are gradually working me off of the IVIG and steroid medication. He and I were both so excited when I was able to walk into my appointment and not use a wheelchair. He is very prompt with correspondence.
I used to walk two miles every day, and I am looking forward to getting back to that. I am amazed and very thankful. My advice is this: If you think you might have a problem, talk to your doctor and get any necessary tests to help put you on the right track.
One Friday, I felt a tingle in my leg. On Saturday, I felt tired. Sunday I went to play a soccer game and had no energy. Monday, my left side felt numb, and by Tuesday, I couldn’t move my left side at all.
I was rushed to OHSU, and the doctors discovered I’d had a type of stroke: a lacunar stroke. A small blood vessel was closing, sealing off a small part in my brain, the part that controlled motion. I was in the hospital about a week.
After I got out of the hospital, I spent a lot of time recovering. Even six months after my stroke, I could only type with one hand and had problems walking. I was an athlete and played soccer. I was in my 40s. I didn’t want to give up and not do anything.
So my doctor, Dr. Helmi Lutstep recommended a relatively new type of physical therapy called high-intensity task training. I worked with Andrea Serdar, a physical therapist who’s been trained in this area.
Thanks to high-intensity task training, I can now do most of the things I couldn’t before — even things that seem as simple as carrying a coffee cup in each hand.
It took me about a year or so, but I got back to playing soccer, though sometimes I have balance issues when I make a kick. My relationship with Dr. Lutstep is more than a patient/provider relationship. I feel like they’re friends now, that I can come to them with any question.
I’ve now also run two marathons on behalf of the National Stroke Association. They reached out to me in an effort to raise awareness about women and stroke. I remember when I first started training, I would walk at the track, making sure to align my left foot with the white line, like teaching it where it needed to go.
It’s been almost five years now. Having a stroke this young was definitely a shock. It’s inspired me to get more involved with stroke education and awareness. I’m also interested in helping expand resources and create networks for stroke survivors and their families. It’s definitely helped me appreciate things more.