2024-07-23 14:00:00
Burgdorf. “I woke up in the morning and saw double vision,” recalls Sabine Grebe-Warmbold. At that time, she was in her early 20s and had symptoms she couldn’t identify. She was examined by an ophthalmologist, who quickly had a specific suspicion and referred her to a hospital. There, the diagnosis came swiftly: Multiple sclerosis (MS).
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MS is also referred to as the disease of 1000 faces, as the symptoms are diverse and nonspecific. This incurable autoimmune disease can cause various disturbances: from vision problems to sensory disturbances such as tingling or numbness in the extremities, to cognitive issues, weakness, fatigue, pain, and even paralysis.
“I celebrate my golden wedding anniversary with my MS this year”
Sabine Grebe-Warmbold, leader of the Multiple Sclerosis contact group Burgdorf
However, many affected individuals can grow old with the disease. Grebe-Warmbold is now 71 years old. “I celebrate my golden wedding anniversary with my MS this year,” says the leader of a self-help group in Burgdorf. Regularly, affected individuals and their relatives come together at the group to talk and support each other.
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MS Self-Help Group in Burgdorf Offers Support
At a meeting in July, the group is somewhat smaller than usual. Many who come to exchange suffer from the heat. “Many people with MS are tired and sluggish in this weather; they can’t make it out the door,” says Grebe-Warmbold. Despite some empty seats, the atmosphere is good. The table is nicely set with filled rolls and drinks in the community center on Lippoldstraße. Conversations abound. Some participants discuss what can help in the hot weather: cool vests, for instance.
The group – officially called the Multiple Sclerosis Contact Group Burgdorf – will celebrate its 40th anniversary next year. For 20 years, Grebe-Warmbold’s husband, Dietrich Warmbold, led it until he could no longer continue. Now, Grebe-Warmbold is the official contact person. She is doubly affected: as a relative and as someone who is herself afflicted.
In Dietrich Warmbold’s case, MS also first manifested itself with a vision problem: “It felt like I had dirt in my eye,” he says. He too was diagnosed early. However, he had less luck than his wife: While she has a relatively mild relapsing course of the disease, with many problems resolving after each acute attack, his MS is progressive.
Illness Progresses
This means: There are no relapses and no improvement. The illness progresses with a continuous deterioration. “You’re lucky: it’s not cancer and not AIDS; it’s MS. With it, you can grow old,” is how his doctor introduced the diagnosis. The decision to convert his mother’s house in Lehrte into a wheelchair-accessible home proved to be wise. Because now, Warmbold’s right side is completely paralyzed; without a wheelchair and help, not much is possible anymore.
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How do these disturbances occur? “Due to an overreaction of the immune system, there are inflammations in the brain and/or spinal cord,” explains Grebe-Warmbold. These and the scars that remain after healing cause various neurological disturbances depending on the location of the inflammation.
These inflammatory foci can be well visualized with an MRI; the disease can be diagnosed definitively through the relevant inflammatory factors in the cerebrospinal fluid via a so-called lumbar puncture. Acute relapses – which was the case with Grebe-Warmbold – are treated with corticosteroids. “In the past, there were only tablets; today, there are infusions,” her husband says.
Every Course is Different
However, treatment has become more comprehensive. While it was once said ‘no exertion with MS,’ there are now special exercise groups for those with MS. “It’s important to maintain strength and muscle mass,” says Grebe-Warmbold. A healthy diet – no special diet – and medications that slow down the overactivity of the immune system can also have a positive effect. “You just need to avoid charlatans who promise they can cure you,” her husband warns emphatically.
Meeting point: The Multiple Sclerosis Contact Group Burgdorf meets in the community center on Lippoldstraße; fortunately, it is barrier-free.
Source: Sandra Köhler
The full extent of her illness only became clear to Grebe-Warmbold several years after her diagnosis. “But would it have made a difference?” she asks today. She lived her life, went to work, and had two children. “Maybe I wouldn’t have done the latter so easily,” she ponders.
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Medical Staff Should Be Knowledgeable
The diagnosis can disrupt the entire life and family planning for relatives. “My then-husband always wanted to go on vacation to the South Seas with me. But for me, the North Sea was the maximum. I couldn’t manage more,” she recalls. She met her current husband through the advertising section in the magazine of the German Multiple Sclerosis Society (DMSG).
Both have also advocated for decades that medical staff gain an understanding of the disease and the needs of those affected. “We let them climb stairs with sandbags on their legs, used drunken goggles, and made them get small change out of their wallets while wearing thick gloves, imagining they were waiting in line at the supermarket,” Grebe-Warmbold reports. Why? “Out of pure selfishness. If I, as a person affected, have to go to the hospital, I want staff that knows what’s going on.”
DMSG Provides Comprehensive Advice
Equally important is the advice for those affected. Because many questions arise with the diagnosis. Those who do not want to go directly to a self-help group because it may drag them down mentally can find contacts at the DMSG. “There are doctors and advisors affected by the disease; these are trained, self-affected volunteers you can call,” says Grebe-Warmbold. She is also among the latter. “We have already advised many people at our home, as that is indeed a more protected environment than in the group,” her husband notes.
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Those who wish can first contact them before joining the meetings on Lippoldstraße. These meetings are designed for both affected individuals and their relatives. From the couple’s experience, they can be a great help. Because others share similar experiences, there is a lot of understanding.
Meetings for Affected Individuals and Relatives
The Multiple Sclerosis Contact Group Burgdorf is a member of the state association Lower Saxony of the German Multiple Sclerosis Society. The meetings take place once a month on Fridays from 5:30 PM to 8 PM at the St. Pankratius community center, Lippoldstraße 25. The building is accessible; the next meeting is on August 16. Interested parties can contact Grebe-Warmbold at phone (05132) 1699 or via email at [email protected].
HAZ
Emerging Trends in Multiple Sclerosis Awareness and Support
Multiple Sclerosis (MS), known for its diverse and often unpredictable symptoms, is increasingly garnering attention within both the medical community and the general public. With a growing understanding of the disease, several key trends are expected to shape its future landscape, particularly in awareness, treatment, and community support.
Enhanced Understanding and Early Diagnosis
As awareness of early MS symptoms, such as visual disturbances and sensory issues, rises, more individuals are likely to seek medical attention sooner. This trend could lead to earlier diagnosis and intervention, ultimately improving long-term health outcomes for patients.
Innovative Treatment Options
Recent advancements are paving the way for innovative treatment options, including personalized medicine that takes into account individual genetic profiles. This shift towards tailored therapies could revolutionize how multiple sclerosis is managed, enabling healthcare providers to offer more effective and specific treatments.
Prioritizing Patient-Centric Care
There is a growing emphasis on patient-centric care, which prioritizes the needs and preferences of those living with MS. This approach includes integrating mental health support, nutritional guidance, and physical rehabilitation programs specifically designed for MS patients. Self-help groups, like the Multiple Sclerosis Contact Group in Burgdorf, are becoming vital resources in fostering community and providing emotional support.
Leveraging Technology for Support
The utilization of digital platforms for support and education is on the rise. Online forums, telemedicine appointments, and virtual support groups allow patients and families to connect irrespective of geographic barriers, creating a robust network of support and information sharing.
Focus on Holistic Wellness
A more holistic view of health is emerging, recognizing the importance of lifestyle factors such as diet, exercise, and mental health in managing MS symptoms. Research into integrative approaches that combine traditional medical treatments with lifestyle changes is likely to gain momentum, offering patients more control over their health.
Advocacy for Better Training in Healthcare
As the need for specialized knowledge about MS increases, there is a pressing demand for healthcare professionals to receive comprehensive training about the disease. Initiatives aimed at educating medical staff about the challenges faced by MS patients, as advocated by individuals like Sabine Grebe-Warmbold, could lead to better patient care and improved outcomes during hospital visits.
Expanding Roles of Support Organizations
Organizations like the Deutsche Multiple Sklerose Gesellschaft (DMSG) are expected to expand their roles in providing extensive information and resources for patients and families. This could involve mentorship programs, workshops, and accessible counseling services for those newly diagnosed.