Many PicnicHealth users endure chronic illnesses that affect their daily lives. The medical community is still seeking answers for many severe and chronic diseases. Whether it’s trying to determine a cause or trying to find new treatments—or even a cure—medical researchers around the globe are continually making discoveries and creating new studies that may aid them in treating patients who suffer from “incurable” diseases.
One such disease that is yet to find a specific cause or cure is multiple sclerosis (MS). MS is an autoimmune disease, a condition where the body’s immune system attacks its healthy tissues instead of attacking foreign viruses. MS causes the immune system to malfunction and attack the fatty substance that protects the body’s nerve fibers, called myelin, wearing them down or stripping the nerves of the material altogether. It even affects the nerves in the brain and the spinal cord.
To date, there is still no cure for multiple sclerosis. Nevertheless, doctors and medical researchers have worked tirelessly to continue searching for better drugs and treatments. Their studies and discoveries improve the way the disease is understood, give patients a better quality of life, and can even extend life expectancies beyond what they would have been.
According to the Mayo Clinic, new disease-modifying therapies or DMTs are currently being developed and studied for MS. The purpose of DMTs is to reduce how often and how severe the recurrence of MS symptoms happen to a patient. DMTs also hold promise for lengthening their times of remission and decreasing the neurological damage that MS attacks cause.
One of the new therapies that is currently being studied is the use of a recently FDA-approved drug named ocrelizumab, which reduces the relapse rate as well as the potential to develop disabilities. It’s the first DMT of its kind that slows the progression for primary-progressive MS.
More recently approved treatments are fingolimod, which treats pediatric MS, and higher doses of glatiramer acetate injections. The medication, which previously existed as a treatment for MS, is now approved for up to three times a week at a 40mg dosage. Along with currently approved therapies, the drug ibudilast is now in its phase II of clinical trials, and is considered as another promising drug to reduce the progression of disability.
Gene research has also made some progress as scientists have studied and identified more than 200 genetic variants that may be associated with MS and how it manifests. The identification of four new genes that have been linked to the disease may help scientists find better ways to treat and prevent MS.
New potential targets have been identified by researchers when it comes to stopping nerve loss due to MS. Scientists and researchers from the Gladstone Institutes and the University of California San Francisco report that they’ve made progress in mapping out how nerve degeneration happens in MS as well as other similar disorders. By focusing on the activated immune cells in the brain and spinal cord, they studied a condition called “oxidative stress,” which is an imbalance of harmful free radicals. By using state-of-the-art technologies, these scientists were able to develop an “atlas” of the interactions between these immune cells in the brain.
There is still a long way to go for researchers and scientists when it comes to ultimately defeating MS. But with every passing year, there is more promise that springs up from the studies and treatments getting developed. It gives renewed hope to people who still suffer from MS.
PicnicHealth is supporting new research into MS. Learn more by visiting Flywheel.MS.
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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.
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.
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.
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
Learn MoreWhen 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.
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.
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.
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.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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