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Rapid Eye Movement Behavior Sleep Disorder: One Person’s Journey to Delay Neurodegenerative Disease

Ray lives each day knowing that a neurodegenerative disease like Parkinson’s is in his future. But he is determined to be part of the work toward preventive treatment.

When Ray started acting out his dreams while asleep, he was in the middle of a career transition and dealing with fallout from the 2007 financial crisis, so he chalked it up to stress. 

He suspected he had obstructive sleep apnea, which happens when the throat muscles relax and block the airway. It often causes people to jerk awake and gasp for air.

But Ray would often kick his legs and move his arms in his sleep, disturbing and even hitting his wife.

Then, while traveling for work, movement during sleep led him to throw himself into a hotel nightstand hard enough to break the skin around his sternum. That was the moment where he realized what he was experiencing wasn’t normal.

“When I really came back from that trip and went back to my primary care physician and said, ‘Look, there’s something more to this. It’s just not apnea, but I need to get checked out.’ And that’s when he referred me to a neurologist,” Ray explains.

Receiving a Diagnosis of Future Neurodegenerative Disease

The following six months of appointments and tests ended with an overnight sleep study known as a polysomnogram. After the sleep study, Ray received a diagnosis of obstructive sleep apnea. His doctor then casually mentioned that Ray also had rapid eye movement behavior sleep disorder (RBD).

RBD is a condition that causes dream enactment, resulting in undesirable and potentially dangerous movement while sleeping.

While at first, Ray’s attention was on the sleep apnea diagnosis, this second diagnosis would be the one to change the course of his life.

That’s because RBD is also a prodromal symptom, or indicator, of future neurodegenerative brain disease. As many as 76% to 81% of people with RBD go on to develop Parkinson’s disease, multiple system atrophy, or Lewy body dementia. About half develop a neurological disorder within 12 years.

Ray is sharing his story to raise awareness about prodromal symptoms of neurodegenerative disease like RBD among the general public and medical professionals. Other prodromal symptoms can include loss of smell, constipation, and lightheadedness when standing. Early identification of prodromal symptoms may potentially lead to an early diagnosis and opportunities to slow neurodegeneration.

There is currently no cure for RBD and no way to stop a neurological disorder from developing, even with an early diagnosis like Ray’s. 

“It’s hard not to think about it,” Ray says. “As I’ve gotten to understand this area and this field of study and research, I’m prepared to deal with Parkinson’s because according to the proposed biological staging or classification of Parkinson’s, I effectively do have it. It just hasn’t been recognized in the clinical setting yet.”

Ray doesn’t know when he will experience other symptoms of Parkinson’s disease, which tend to include tremor, motor-related symptoms, and mood changes. He and his wife just live each day knowing it is in their future. “The clock is ticking,” Ray says.

Adapting to Life With Rapid Eye Movement Behavior Sleep Disorder

Ray was fitted for a C-PAP machine, which he now wears overnight to help him breathe. It took him time to get used to sleeping with it. 

He takes medications for RBD to keep him from acting out his dreams. This sometimes leads to him feeling frozen and unable to react in his dreams. But, he says, at least he isn’t throwing himself out of bed.

“Some people have chosen to physically constrain themselves, or use a sleeping bag, or even in a separate room if they have a bed partner. Those are other techniques, but the majority of people, I think, find that medications are an effective way to treat the symptoms. But you still have RBD and you still would act out your dreams if those medications were discontinued,” Ray says.

Ray has also had to adapt his lifestyle. He eats small meals to not overwhelm his digestive system and worsen constipation symptoms he experiences. He has also had to shift his daily routine due to increasing fatigue. 

“I get fatigued in the afternoons in particular, so I try to focus on my most important topics of the day and activities in the mornings. I tend to nap, given the opportunity in the afternoons, and I go to bed pretty early.”

Ray and his wife have always enjoyed traveling. But the way they travel has changed to accommodate his symptoms. This includes taking things more slowly and not doing too many activities. 

“I cannot travel the way I used to 10, 20 years ago,” Ray says. He schedules time to relax and nap while away and has to make a plan to account for time changes and changes to his circadian rhythm, which can negatively affect his sleep.

“Now I have to really plan my daily activities and be careful not to over schedule myself and to give myself breaks and be very cautious of what I eat,” Ray says.

But perhaps the greatest challenge Ray has had to adapt to has been the emotional impact of brain disease, and the awareness that he will one day develop a neurodegenerative disease.

A life-changing diagnosis like Ray’s also changes the way you think about and plan for the future. For Ray, there is still a lot of uncertainty.

“It’s just a matter of how fast these conditions develop,” he says. “We have prepared our lives for this when we moved to be closer to one of our children that was having children of their own. We chose to move into a townhouse instead of a house. We’re just trying to simplify our lives and slow down and accommodate the aches and pains.”

Making a Difference Through Research

Ray began participating in clinical trials soon after his diagnosis. He hopes his participation can help researchers unlock a way to prevent future neurodegenerative disease, for him and many others.

Ray has already participated in “about a dozen” trials that typically involve a neurological evaluation in addition to providing samples of his blood and cerebral fluid through a spinal tap. He has even been added to a registry of patients who are ready to participate in a clinical trial for preventive treatment, once a potential treatment is ready for a human trial.

But so far, he’s still waiting for that call.

For now, he hopes for global collaboration to find ways to prevent and cure neurological disease for the sake of his own future and that of others affected by RBD. He hopes that this collaboration will lead to “significant breakthroughs to identify these diseases early on, to stop and slow them down, or even to avoid them altogether.”

Research into neurodegenerative brain diseases and disorders, their causes, and the connections between them can help find a cure for people like Ray. When we invest in research into one brain disease, researchers will uncover insights that will help develop treatments and cures for many others

The American Brain Foundation is committed to finding cures for all brain diseases and disorders. Donate today to make a difference. With your help, we can all experience life without brain disease.