Recovery from PML can be a slow and unpredictable process, and many patients face uncertainty and change as they navigate life after the disease.
One of the primary challenges facing PML survivors is uncertainty about their future. PML can cause significant cognitive and physical impairments, and there is often little predictability in terms of how these impairments will progress. This can lead to feelings of anxiety, depression, and hopelessness. Experts suggest that PML survivors can manage uncertainty by focusing on the things that they can control, such as their daily routines and activities. They also suggest seeking out information and support from healthcare professionals, support groups, and other resources.
Another challenge facing PML survivors is adapting to change. Many survivors experience changes in their relationships, work, and overall quality of life because of their illness. Experts suggest that PML survivors can adapt to change by setting realistic goals and expectations, focusing on their strengths and abilities, and seeking out new opportunities for growth and learning. They also suggest developing a strong support network of family, friends, and healthcare professionals.
Managing uncertainty and change in post-PML life requires a multifaceted approach that addresses both the physical and emotional aspects of the survivor’s experience. PML survivors should seek out information, support, and resources to help them adapt to their new reality, set realistic goals, and focus on their strengths and abilities. With the right tools and strategies, PML survivors can face the future with hope and resilience.
This is Russell, long term PML Survivor:
“My early symptoms were slight weakness in my left hand and numbness. It was diagnosed as a pinched nerve. I then began getting headaches, stomach issues, and balance problems. I went to a neurologist, and he diagnosed PML. I then progressively got worse until I fell at my parents’ house and couldn’t get up. I was hospitalized and deteriorated very quickly. I had a spinal tap and brain biopsy, and both were inconclusive.
My HIV Dr continued meds and said hopefully if the meds controlled the virus, the PML would become manageable. I was put in a nursing home and given PT. I was unable to take care of myself and put on hospice care. They stopped my PT because the nursing home Dr told the insurance company that I was not going to survive. My HIV Dr tried to get me back on PT but couldn’t. I feel this is why I still have major issues with my left side.
A couple of months in the home I started showing improvement and my parents took me home. My mother fought to get me PT once I went on Medicare and I was able to improve to the point that I needed the wheelchair less in the home. Over the next 20+ years I continued to make strides and I now drive, live alone, and only use a walker when in public. I’m not going to say I wouldn’t change a thing because that would be a lie, but going through this made me realize how strong I am and what is important in life. I’m more in tune with my body and mind. I don’t stress out over everything, but don’t ignore what I feel is wrong. I’ve also realized the importance of friends that will listen to me when I’m scared and when I’m happy. This experience has been equal parts hell and self-discovery.”