Ask Nurse Lynn: Accelerated Aging in Prader-Willi Syndrome

Question:

Male, 65 years old, unknown subtype

My brother just turned 65 with PWS. Over the past 18 months he has gone from walking 3 miles daily and swimming, very active, but now barely able to walk 20 feet. He is weak and falling and then can’t get up. He has seen a spine specialist and neurologist but there is no explanation on x-ray or MRI. All lab work is mostly normal. He was catatonic 10 yrs ago. Now he is on benzodiazepines occasionally. He is very angry and demanding, unusually so. No one can figure out what is wrong. He has moderate kidney disease and is a type 2 diabetic.

Nurse Lynn’s Response:

When an adult with PWS suddenly goes from being very active to barely being able to walk, falling often, and becoming angrier or demanding, this is not normal aging and should not be ignored. Adults with PWS can experience early or accelerated aging. This means their bodies and brains may act older faster than expected, not because of “just getting old,” but because PWS affects muscles, nerves, hormones, and overall health in special ways.

One major concern is muscle weakness and muscle loss. People with PWS naturally have low muscle tone and less muscle mass. As they age, muscles can weaken quickly, especially if activity drops. When muscles weaken, walking becomes harder, falls happen more often, and getting up from the floor can be very difficult. If moving feels hard or scary, people may move even less, which creates a vicious cycle, less movement leads to more weakness. X-rays and MRIs often look normal because they do not show muscle loss well, even when it is severe. Some individuals benefit from working with physical and occupational therapy to help with balance and core strengthening. They often can develop home exercise programs that the individual can do at home daily with support.

Medications, especially benzodiazepines, can also play a role. While these medicines are sometimes used to treat anxiety or catatonia, long-term or repeated use, especially in older adults or those with kidney disease, can cause muscle weakness, poor balance, falls, confusion, and more behavior problems.

Hormone problems are another key issue. Low cortisol (adrenal insufficiency) and low sex hormones are common in adults with PWS and can cause extreme fatigue, weakness, trouble handling stress, mood changes, and falls, even when basic blood tests look “normal.” Special hormone testing is often needed.

Changes in behavior, like anger, frustration, or demanding behavior, can be a sign of distress, not intentional misbehavior. Losing strength, independence, and the ability to move is scary. The brain and body may respond with agitation or emotional outbursts as a way of coping.

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