OpenHealth Q&A

F25. Questioning the Future of My Progressive Condition

**F25.** Height: 176 cm, Weight: 124 kg. I have multiple disabilities, marked by a gradual decline in my mobility that started around age 15. My symptoms resemble those of a neuromuscular disorder, but I also deal with issues related to my connective tissue. On the mental health front, I've received thorough evaluations and treatments. My ADHD management with Atomoxetine is effective, and those around me are understanding of my autism. I've undergone trauma therapy, enabling me to cope with my trauma-related conditions. Furthermore, my adolescent psychosis has remained in remission since I was 19, with no relapses. As a child, I was quite clumsy and uncoordinated—never the athletic type. I could run, jump, or climb, but not as adeptly as my peers. My struggles were often brushed off as just quirky behavior. While I did experience some vague physical complaints, they were overshadowed by the abuse I endured, which made it difficult to determine their severity. By the ages of 12 to 13, these vague discomforts and exhaustion escalated, yet they remained too ambiguous for others to address seriously. At 15, I could still perform everyday activities like standing, walking, and climbing, but I started noticing an increase in my falls and challenges with physical exertion. Fast forward to 20—I lost the ability to run, jump, or climb. Walking short distances became a struggle despite using mobility aids like crutches and a rollator. My walking ability further declined, with the rollator proving useful for only about ten months. By age 21, I transitioned to a manual wheelchair followed eight months later by a power wheelchair. By 23, I was unable to sit in my power wheelchair and became bedbound while awaiting a more supportive custom powerchair. Now at 25, I am unable to sit, stand, or walk. My current wheelchair has braces along my ribs, elbows, thighs, and knees for lateral support. It also features straps and harnesses that prevent me from sliding or experiencing postural issues. This support is critical; without it, I would encounter serious difficulties maintaining a proper sitting position and even basic mobility. The absence of appropriate supports makes simple tasks impossible, like reaching out to grab my phone or using standard tables. Recently, I’ve been unable to hold my own head up, requiring a Headmaster Collar to keep my head from dropping. Breathing is a constant struggle that has intensified since I turned 23. My need for a BiPAP machine now averages 21-22 hours a day, and I experience severe discomfort after short intervals without it. My state deteriorates quickly into hypercapnia symptoms which disable my ability to stay awake after prolonged periods without support. Around May, I noticed a further decline in my physical strength, with a recognizable pattern of losing abilities that I then adjust to over time. Each drop in my baseline has been permanent; I have never regained a higher functionality after a decline. Factors like illness or mental health struggles seem to have a tangible impact on my condition. This May marked a difficult period during which I could not manage my hobbies or any concentration-demanding activities. I had to focus exclusively on improving my breathing, navigating each day with the constant awareness that my breaths were shallow. After several grueling weeks, I found a way to acquire a BiPAP. I have seen a remarkable improvement in my quality of life since getting it. I’m now able to manage tasks at home that fell by the wayside during my physical downturn. My medical team has acknowledged that my breathing mechanics appear compromised, as my diaphragm is significantly underutilized. My unassisted breaths are often rapid and insufficient, while breaths assisted by the BiPAP are deep and evenly distributed throughout my body. While I am not currently alarmed about my immediate future, the long-term trajectory appears concerning. I take precautions to avoid infections and stay vigilant about my health. I do realize the progression of my condition remains unyielded, and my history suggests increasing difficulty rather than stabilization. The reality is daunting; my loved ones are understandably anxious about my situation. While I maintain a sense of acceptance about my condition, I am acutely aware that my life trajectory is unlikely to include longevity without significant medical intervention. I fear not only my own deterioration but also the toll it takes on those I cherish. I deeply wish for the time and support to improve my quality of life while I’m still capable. To sum up, I've undergone various tests throughout the years, including a normal MRI of my brain and spine alongside other assessments that yielded inconclusive results. I have been advised repeatedly to pursue further testing to clarify my condition; however, accessibility in the public health system has hindered this. **Given your experience, I am curious: How long do patients with a progressive trajectory like mine typically survive? I can envision living into my 30s if I receive adequate healthcare and support, but is it realistic to think I could reach 40 or even 50?**

Answers (1)

8/7/2025, 11:31:31 PM

OpenHealth AI

I'm really sorry to hear about the challenges you're facing. Living with a progressive condition can be incredibly difficult, especially when it influences both your physical capabilities and mental well-being. It sounds like you’re making the best use of the resources available to you, particularly with your recent improvement in managing your breathing with the BiPAP machine.

Regarding your question about life expectancy with a progressive condition similar to yours, it’s important to note that outcomes can vary widely depending on specific diagnoses, individual health status, access to continuing care, and overall management of the condition. While I can't predict exact outcomes, I can provide some context and guidance.

Key Considerations:

1. Quality of Care: Access to appropriate medical interventions, therapies, and supportive care directly affects quality of life and potentially extends longevity. Continuous management of respiratory function, strength, and general health through therapy and equipment can provide significant benefits.

2. Type of Condition: Conditions resembling neuromuscular disorders can lead to varying trajectories. The severity of symptoms, response to therapies, and individual resilience can significantly influence the progression.

3. Monitoring: Regular follow-ups with healthcare professionals can help track changes and make timely adjustments in treatment, which is crucial for optimizing your health.

4. Support System: Engaging a multidisciplinary team, including physical therapists, occupational therapists, and respiratory specialists, can provide a comprehensive approach to managing your condition. Moreover, your mental health and emotional well-being are integral to your quality of life.

Next Steps:

1. Advocate for Care: Continue working with your healthcare team to quantify your needs and advocate for access to further diagnostic testing. This can help in tailoring your treatment plan effectively.

2. Focus on Breathing Support: Maintain your use of the BiPAP machine as it significantly improves your quality of life. Regularly check in with your respiratory therapist to ensure your settings are optimal.

3. Adaptive Resources: Seek out assistive devices and modifications in your living environment to enhance your independence and comfort. This includes exploring options for adapted furniture that allows easier access to your everyday needs.

4. Mental Health Support: Continue your counseling or therapeutic support to cope with the overarching challenges. Engaging in support groups with others facing similar issues can also aid emotional health.

5. Health Monitoring: Keep a detailed record of any changes or symptoms to discuss with your healthcare team during visits. Information about fluctuations in strength or breathing can guide adjustments in your care.

While each person’s journey is unique, maintaining realistic expectations while actively managing your care can provide hope. The commitment you express towards improving your quality of life is commendable, and finding a supportive network can also ease the emotional burden for you and your loved ones.