# These Partners On and Off the Dance Floor Are Pushing for PSP Research Together By Taylor Kane Apr 08, 2021 • 3 min read _Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023._ Diane and Wayne recently began seeing an occupational therapist to see how Wayne was managing as a caregiver for Diane, who struggles with walking and balance control as a result of her rare disease, progressive supranuclear palsy (PSP). Wayne remembers the therapist was quite amazed and said she could tell Diane and Wayne were dancers because they are able to sense each other’s bodies and move together so well. Seven years ago, Diane began experiencing balance issues. During a vacation, Diane had suffered a random fall which doctors thought was due to the arthritis Diane had in her knees. However, after Diane had two additional falls in 2019, which resulted in cracked ribs and a broken collarbone, it was clear something more was at play. A neurologist suggested Diane may have some type of Parkinson’s disease, but after additional testing an MRI showed that Diane had PSP, a rare brain disorder similar to Parkinson’s but with significant differences. Both PSP and Parkinson’s cause movement difficulties, stiffness, and clumsiness, but PSP is much more progressive and degenerative. Problems with speech, eye movement and swallowing are usually more significant in PSP patients. Because of the similarity in symptoms, PSP is often misdiagnosed as Parkinson’s. Diane’s diagnosis came as a shock to everyone. Her children knew she had difficulty walking, but it didn’t seem like it impacted her life all that much. For Diane’s 75th birthday, she and Wayne traveled to Disneyland, and later that year went to Germany. “We were still walking through the streets of Berlin,” Wayne remembers. After Diane was diagnosed with PSP, she and Wayne sold their house and moved into a retirement home. It was early 2020 and the couple immediately had to go into a two-week quarantine due to COVID precautions. Afterward, it became challenging for them to meet other residents in their home because of the restrictions. To date, Diane’s most significant PSP symptom is trouble speaking due to lack of muscle control. She’s currently undergoing speech therapy with a speech pathologist and online through the [Parkinson Voice Project](https://www.parkinsonvoiceproject.org/). “It’s been helping a lot,” Diane says. Diane does her best to stay active, participating in a weekly workout program at the retirement home. In the last few months, the couple have also been able to meet some other residents and attend socially-distanced activities. Wayne explains that because of Diane’s mobility and speech problems, people assume she is cognitively impaired, which she is not. “She is regularly playing Scrabble and word games on her computer which require mental skill. But she didn’t beat me at Rummy last night, which she usually does,” Wayne jokes. He finds it frustrating that people speak loudly and slowly to his wife because they assume she is having trouble understanding and wishes people would speak to her normally. Diane is an ambassador for the AllStripes’ PSP program, growing knowledge about the condition by sharing her de-identified medical records. Additionally, she is currently participating in a multi-institutional research study for PSP and is a candidate for future clinical trials. “We’re very supportive of research,” Wayne says. Not enough is known about PSP or how to treat it, but Diane and Wayne are doing their part to change that. ## We know that every person's story is unique and deserves to be heard. ### Create a List List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records. ### Ensure You Have the Appropriate Legal Status It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own. ### Gather and Organize the Medical Records in One Place It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins. ### Review the Medical Records to be an Informed Advocate The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan. ### Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association ### 1\. Build a support network. When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own. There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving. ### 2\. Stay organized. The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress. ### 3\. Explore treatments and clinical trials. We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide. ### 4\. Make time for self-care. It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup. ## Together, we can make a difference. Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association ### Tip: Download or print the poster at the end of this article to review before your next appointment! However, it's important to consult with a healthcare provider or registered dietitian to determine the appropriate amount of protein for your individual needs. In general, a diet with moderate protein intake (about 0.8 grams per kilogram of body weight per day) is recommended for people with kidney diseases.