20 posts tagged “TOA”

“Breaking up” with a doctor after 14 years — Bernadette’s journey to better care

Posted 2 months ago by

PatientsLikeMe member Bernadette (yellsea), who’s on the 2018 Team of Advisors, has been living with Parkinson’s disease (PD) since 2002. She recently filled us in about switching specialists after more than a decade with the same neurologist, and advocating for herself after enough “red flags” popped up in her interactions with that physician.

Out with the old

Bernadette lives in remote area in the Great Lakes Region of New York. The first PD symptom she noticed was her handwriting getting small (a common early symptom of PD known as micrographia) — and her first doctor dismissed it as “writer’s cramp.”

When she began having tremors in her hand, she started seeing a neurologist with a strong reputation in Syracuse, about a 40 minute drive from her home.

“He’s very well-respected in the area,” she says. “In fact, a lot of the [other] doctors won’t step on his toes.”

Bernadette was experiencing serious side effects with some of her PD medications — including compulsive gambling out of the blue (a reported side effect of Mirapex) — but her neurologist asked her very few questions about how she was feeling, and never raised the topic of side effects.

“My husband didn’t like him,” Bernadette says of her old doctor. “I didn’t know any better. There were cues I should’ve picked up on long before the 14 years.”

Bernadette got a taste of other Parkinson’s care when she enrolled in PD telemedicine trials at the University of Rochester (U of R), where the staff is “amazing,” she says.

Bernadette says she was experiencing terrible dyskinesia, and a U of R neurologist mentioned that one of her treatments might be a factor (but didn’t suggest altering her treatment without consulting her doc).

She stopped taking the medication without telling her usual neurologist in advance. (“That was my one mistake,” she notes.) But she noticed a major drop in dyskinesia.

“When I told him I didn’t take [the drug] anymore — and why I didn’t take it anymore —he came unglued,” Bernadette says. “Nobody intimidates this little girl, but I was almost in tears.”

In with the new

Fortunately, Bernadette’s husband, Mark, attends doctor’s appointments with her and calmly stepped in when the doctor flipped out.

“Mark said, ‘You’re not going back there,’ and I said, ‘No, I gotta find another doctor,” she says.

After about a month, she landed a new neurologist at U of R. Although Rochester is about an hour and 15 minutes away, the change has been well worth it and the transition was “seamless” in terms of paperwork and insurance, Bernadette says. (Other patients aren’t always so fortunate, when it comes to insurance coverage — see one example here.)

Her new physician is a younger doctor who’s a movement disorder specialist (focused on PD), rather than a general neurologist (treating a wide range of neurological disorders).

“I was leery” at first, Bernadette says. “She wasn’t that old. She wasn’t out of school that long. My husband said, ‘No—take her! She’s young! She’s got fresh ideas!’ I never looked at it that way.”

These days, Bernadette’s doctor visits are pleasant from start to finish, she says, because the entire office staff is friendly and she has more of a dialogue with her doctor. She isn’t afraid to ask questions or discuss her symptoms and side effects.

“She knows what questions to ask someone with Parkinson’s,” Bernadette says of her new doc. “I tell everyone [with PD] that they need to go to a motion specialist.”

Bernadette continues to stay on top of PD research by reading books and articles (which she advises all patients to do), and no longer feels intimidated about raising new ideas, whether in-person or over the online patient portal (something her old doctor didn’t offer).

“I tell people, you have to do it yourself — you have to be an advocate for yourself,” Bernadette says.

Not every doctor and patient will click, she says, especially with such a varied disease as PD (sometimes called a “snowflake disease” because it can affect people so differently).

“You gotta go with your gut. I might like German shepherds and you might like chihuahuas — and there’s nothing wrong with that,” she says. “It’s a personal thing.”

Bernadette — an upbeat jokester — likes how her new doctor can roll with her sense of humor, but also knows when to take her seriously.

“I can be me,” she says.

How’s your relationship with your doctor? Have you ever noticed “red flags” in your care or had to change doctors? Join PatientsLikeMe today to jump into this conversation in the forum. Also, check out our Good Care Checklist, which PatientsLikeMe developed based on recent research with the Robert Wood Johnson Foundation on “good health care” from the patient perspective.

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Zoodles! Let’s dish on lupus/food + swap recipes

Posted 3 months ago by

If you’re living with lupus, have you found any particular foods that affect you and your condition — for better or worse?

Member Jeanette (JeanetteA6872), a member of the 2018 Team of Advisors who’s living with systemic lupus erythematosus (SLE), shares which ingredients she tries to include or avoid in her diet, plus three of her favorite recipes (psst—one involves zoodles!).

Food Q&A with Jeanette

Jeanette says she turned to dietary changes when she stopped taking Plaquenil due to severe side effects, including retina damage. “I had nothing to lose — I signed up for Tony Robbins’ Unleash the Power Within [a self-help program] that made me look at myself and my relationship with food differently,” she says. “I started logging my food intake for a few weeks on and off, I noticed how some of my favorite foods were causing me some issues ranging from stomach pains to full inflammation. That’s when I started paying close attention to what my body was telling me and I needed to do something about it.”

Here’s what else she shared with us in a recent Q&A. Everyone is different, so these foods and dietary changes may not affect you and your lupus the same way. Talk with your doctor or a registered dietitian about finding foods that work for you.

Have you noticed any specific ways that your diet or certain foods affect your symptoms?

I didn’t go on any specific diet at first, I started eliminating certain foods like sugar (which was causing major fatigue and pain), garlic (causing major inflammation in my knees), eggplants (fatigue and pain in my feet), bean sprouts (stomachaches) and alfalfa (full inflammation and full flare) — some of the known foods that lupus patients shouldn’t eat [learn more at lupus.org].

Then I noticed how meat was causing me fatigue and I noticed inflammation directly in my knees. I tried giving up red meat for two weeks, and I felt good and noticed a reduction of pain. Then I gave up chicken the following two weeks and felt even better. It was so amazing that I decided to give it up for good. After the first few months without meat, my doctor started noticing my blood work was improving drastically, so she began reducing my medications since I was no longer flaring or feeling pain. After a full year she reduced all of my medications to zero and even stopped my infusion.

I notice that if I eat too many potatoes like French fries, baked potatoes or mashed potatoes, as well as tomatoes, salsa, mushrooms and peppers, ice cream and cheese, I feel a little stiffness, so I know it’s too much. I really try to avoid processed and fried foods in general as I immediately notice stiffness.

I do still eat gluten and dairy products, just not every day. Everything in moderation works best, I’ve noticed. If something bothers me this week, I know not to repeat it.

Are there any foods that you try to eat often?

I don’t eat many of the same foods daily. I drink my shakes, but I like a variety of foods from pastas, salads, homemade cauliflower crust pizza, rice and beans, and I started eating fish again, so that’s more protein. There are meat substitutes like Gardein, Beyond Meat and black bean burgers that make great meals.

With the new eating style, I knew I needed to find some type of supplement for my vitamins and minerals because you get so many different vitamins from animal products and I wasn’t eating the same way as before. I tried Herbal Life, then Shakeology, then Modere, and none agreed with me because I have so many allergies. So I gave Isagenix one last try. It was perfect for me. Wow — my blood work started coming back so good, my doctor asked me what my secret was, since I [also] started working out and feeling even more amazing. I feel as if my life is back.

Do you have a few favorite recipes you’d like to share?

(Click on the links for a printable version of these recipes picked by Jeanette!)

Veggie scramble – This veggie-packed egg dish is scrambled in coconut oil and topped with avocado and tomato

Citrus fish tacos – Lettuce leaves serve as the “tacos” in this tilapia recipe, complete with mango salsa

Creamy zucchini pasta with shrimp – “Zoodles” (julienne-peeled zucchini “noodles”) and an avocado-basil “cream” sauce? Yum!

Which foods do you eat or avoid with your lupus in mind? Please add a comment below or join PatientsLikeMe to chime into this forum discussion!

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