Burgdorf. “I woke up in the morning and saw double,” recalls Sabine Grebe-Warmbold. At that time, she was in her early 20s and experienced symptoms she couldn’t explain. She visited an eye doctor for an examination, and he quickly had a particular suspicion and referred her to a hospital. The diagnosis came swiftly: multiple sclerosis (MS).
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MS is often referred to as the disease with a thousand faces due to its diverse and non-specific symptoms. This incurable autoimmune disease can lead to a range of disorders: from visual impairments and sensory disruptions such as tingling or numbness in the extremities, to cognitive difficulties, weakness, fatigue, pain, and even paralysis.
“I am celebrating my golden wedding anniversary with MS this year”
Sabine Grebe-Warmbold, head of the Multiple Sclerosis Contact Group Burgdorf
However, many individuals can live long with the disease. Grebe-Warmbold is now 71 years old. “This year, I’m celebrating my golden wedding anniversary with MS,” says the head of a self-help group in Burgdorf. Patients and family members gather regularly to talk and support one another.
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MS self-help group in Burgdorf offers support
At a meeting in July, the group is smaller than usual. Many attendees struggle with the heat. “Many people with MS feel tired and weak in this weather and cannot make it outside,” explains Grebe-Warmbold. Despite a few empty seats, the atmosphere is positive. The table is beautifully set with sandwiches and drinks in the Lippoldstrasse community center. Conversations are lively. Some participants discuss what helps in the hot weather, such as cooling vests.
The group—officially known as the Multiple Sclerosis Contact Group Burgdorf—will celebrate its 40th anniversary next year. Grebe-Warmbold’s husband, Dietrich Warmbold, led it for 20 of those years until he could no longer do so. Now, Grebe-Warmbold serves as the official contact person and is affected by the disease both as a relative and as a patient herself.
Dietrich Warmbold’s MS initially manifested as a visual impairment: “It felt like I had dirt in my eye,” he recalls. He was also diagnosed early; however, he was less fortunate than his wife. While her illness progressed mainly in milder phases, his MS has been progressive.
Disease progresses
In his case, this means there are no relapses or improvements; instead, the disease continues to worsen. “You are fortunate: it’s neither cancer nor AIDS; it’s MS. You can grow old with it,” his doctor reassured him during the diagnosis. Transforming the house he inherited from his mother in Lehrte to make it wheelchair accessible proved to be a wise decision, as Warmbold is now fully paralyzed on his right side and relies heavily on a wheelchair and assistance.
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What causes these disorders? “An overreaction of the immune system leads to inflammation in the brain and/or spinal cord,” explains Grebe-Warmbold. The inflammation and the resulting scars trigger various neurological disorders based on the locations of the inflammation.
These inflammation sites are clearly visible on an MRI scan; the disease can be definitively confirmed by analyzing the corresponding inflammatory factors in the cerebrospinal fluid through a lumbar puncture. Acute attacks—Grebe-Warmbold experienced one such attack—are treated with cortisone. “In the past, we only had tablets, but now we have infusions,” her husband notes.
Every progression is different
Treatment has since become more comprehensive. Previously, it was believed that people with MS should avoid exertion, but now there are specialized exercise groups for them. “It’s essential to maintain strength and muscle,” emphasizes Grebe-Warmbold. A balanced diet—not a specific diet—and medication that helps control the immune system’s overactivity can also have beneficial effects. “Just avoid trusting charlatans who promise a cure,” her husband stresses.
Meeting point: The Multiple Sclerosis Contact Group Burgdorf convenes in the Lippoldstrasse community center, which is accessible.
Source: Sandra Köhler
Grebe-Warmbold only became fully aware of her illness’s extent several years after her diagnosis. “But would that have changed anything?” she asks today. Consequently, she lived her life, worked, and raised two children. “Perhaps I wouldn’t have approached the latter quite so easily,” she reflects.
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Medical staff should be knowledgeable
For family members, the diagnosis can disrupt the entire family dynamic and future plans. “My husband at the time always dreamed of a South Seas vacation with me. However, I could manage only a trip to the North Sea. That was my limit.” She met her current husband through a classified ad in the magazine of the German Multiple Sclerosis Society (DMSG).
Both have dedicated decades to advocating for healthcare professionals to better understand the disease and the needs of those affected. “We had them climb stairs with sandbags on their legs, wear intoxication goggles, and try to get change out of their wallets with thick gloves, pretending they were in a supermarket checkout line,” Grebe-Warmbold explains. Why? “Out of sheer selfishness. If I have to be hospitalized as a patient, I want staff who understand what’s going on.”
DMSG provides comprehensive guidance
Offering guidance to those affected is equally crucial, as the diagnosis brings up many questions. For those hesitant to join a self-help group due to potential emotional distress, there are contacts available at the DMSG. “There are both doctors and counselors there; they are trained volunteers who have experienced the illness themselves and are available to help,” explains Grebe-Warmbold. She is one such volunteer. “We have counseled numerous individuals in our homes where it feels more secure than in a group setting,” her husband adds.
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Anyone interested can reach out to them before attending the meetings at Lippoldstrasse. These meetings are intended for both the affected individuals and their families. From their experience, they can be immensely helpful, as others share similar experiences and provide mutual understanding.
Meetings for those affected and their relatives
The Multiple Sclerosis Contact Group Burgdorf is a member of the Lower Saxony regional association of the German Multiple Sclerosis Society. Meetings occur once a month on Fridays from 5:30 PM to 8 PM in the parish hall of St. Pankratius, Lippoldstrasse 25. The building is accessible, and the next meeting is scheduled for August 16. Those interested can reach Grebe-Warmbold by phone at (05132) 1699 or via email at [email protected].
HAZ
Burgdorf: Living with Multiple Sclerosis – Stories of Resilience and Support
Burgdorf is home to a significant community of individuals living with multiple sclerosis (MS), an autoimmune disease often described as the “disease of a thousand faces.” The story of Sabine Grebe-Warmbold, who received her diagnosis in her early 20s, encapsulates the myriad challenges faced by those with MS. “I woke up in the morning and saw double,” she recalls, recounting her journey from undiagnosed symptoms to receiving medical care. Her experience illuminates the importance of timely diagnosis and community support for individuals with chronic conditions.
Understanding MS Symptoms and Diagnosis
MS is characterized by a range of symptoms that vary widely among individuals. From visual disturbances like double vision to physical issues such as numbness or tingling in the limbs, cognitive impairments, weakness, fatigue, pain, and even paralysis, the symptoms can be perplexing and daunting.
The trajectory of MS is unpredictable, and while some may experience relapses and then recover, others may face progressive symptoms without periods of improvement. An estimated 2.3 million people worldwide live with MS. Early diagnosis, like what Grebe-Warmbold experienced, is crucial for managing the disease effectively and implementing coping strategies.
Community Support: The MS Contact Group in Burgdorf
The Multiple Sclerosis Contact Group Burgdorf, which Grebe-Warmbold now leads, has been a pillar of support for over 40 years. The group provides a safe space where individuals and their families come together, share experiences, and offer mutual support. They meet regularly at the barrier-free community center on Lippoldstrasse, fostering a sense of camaraderie and shared understanding among members.
“Even on hot days, when many cannot attend, we create a welcoming atmosphere with refreshments and meaningful conversations,” Grebe-Warmbold explains. This community experience is vital to combat the isolation one might feel after a diagnosis, emphasizing resilience and mutual aid.
Living with MS: Stories of Struggle and Strength
For many, living with MS is a journey marked by challenges and adaptations. Dietrich Warmbold, Grebe-Warmbold’s husband, has a more progressive form of MS, which has resulted in significant physical limitations. His story highlights the harsh reality faced by some yet underscores the community’s resilience and spirit. “It isn’t cancer or AIDS; you can grow old with it,” he reflects, focusing on the positives despite the obstacles.
Management and Treatment: Evolving Options for MS Care
Managing MS has evolved significantly over the decades. While once it was believed that exertion should be avoided, today, exercise is encouraged as a means to maintain strength and overall health. Grebe-Warmbold emphasizes the role of physical activity and a balanced diet in living with the disease, steering clear of unproven “cures” offered by charlatans.
- Exercise: Special sports groups cater to individuals with MS, promoting physical strength and mental well-being.
- Diet: A healthy, balanced diet aids in maintaining overall health; no specific diet is mandated.
- Medications: Treatment has shifted from merely controlling acute attacks to comprehensive care involving various therapies to slow disease progression.
Educating Medical Professionals on MS
The Warmbolds have long campaigned for improved training for medical staff on the realities of living with MS. By simulating the physical limitations faced by individuals with MS, they foster empathy and understanding within the medical community. Their advocacy stems from a desire for quality care when faced with medical emergencies.
DMSG Support and Resources for MS Patients
The German Multiple Sclerosis Society (DMSG) plays a crucial role in providing comprehensive support and information. The organization offers resources for those newly diagnosed or seeking community support without immediate participation in a self-help group.
Grebe-Warmbold, who has taken on the role of a trained volunteer counselor, indicates the importance of confidential one-on-one conversations as a means of support.
Meeting Information for the MS Contact Group Burgdorf
If you or a loved one are affected by MS, consider joining the Multiple Sclerosis Contact Group Burgdorf. Meetings are held monthly on Fridays from 5:30 p.m. to 8 p.m. at the St. Pankratius parish hall, Lippoldstrasse 25. The venue is fully barrier-free, making it accessible for all.
Upcoming Meeting Details
| Date | Time | Location |
|---|---|---|
| August 16 | 5:30 p.m. – 8 p.m. | St. Pankratius Parish Hall, Lippoldstrasse 25 |
For further inquiries, you can contact Sabine Grebe-Warmbold at (05132) 1699 or via email at [email protected].
Source: Sandra Köhler